Breast Cancer
Breast cancer is the most common form of cancer in women in the United States. Both its cause and the means for its cure remain undiscovered. More than 2 million breast cancer survivors are alive in America today......
Risk factors include
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In 2001, it was estimated that 192,200 new cases of female breast cancer were diagnosed and 40,200 women would die from the disease. Approximately 46,400 cases of female in situ (preinvasive) breast cancer were projected to be diagnosed in 2001. Breast cancer is the second leading cause of cancer death for all women after lung cancer, and the leading cause of cancer deaths in women between the ages of 40 and 55. In the United States, one out of nine women will develop breast cancer in her lifetime — in 1960, the likelihood was one out of 14 women. This year, breast cancer will be newly diagnosed every three minutes, and a woman will die from breast cancer every 13 minutes.
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Every woman is at risk for breast cancer. The risk of developing breast cancer increases as a woman ages, and the risk is even higher if she has a family history of breast cancer, has never had children or had her first child after age 30, and if she has had prior radiation therapy for Hodgkin's disease. However, more than 70 percent of cases occur in women who have no identifiable risk factors.
Breast cancer can be detected at an early stage in women age 40 and older. More widespread use of regular screening mammography has been a major contributor to early detection. A 1996 survey showed that more than half of U.S. women age 50 and older reported having had a mammogram within the last year. A screening mammogram is a simple, low-dose X-ray procedure that can reveal breast cancer at its earliest stage, up to two years before a lump is large enough to be felt. Annual screening mammography should begin at age 40 and continue as long as the woman is healthy and able to undergo the test.
Annual breast examinations by a medical professional are a required complement to annual screening mammography. Although some breast irregularities are found by women themselves, most women do not perform breast self-examination (BSE) regularly. Although BSE has never been proven to affect survival, a recommended component of every woman's breast health program is to become familiar with her breasts and what "normal" feels to her.
Over 80 percent of biopsied breast abnormalities are proven benign, but any breast lump must be evaluated by a physician. New, less-invasive biopsy procedures permit removal of breast tissue in a physician's or radiologist's office. If detected early, breast cancer can often be treated effectively with surgery that preserves the breast, followed by radiation therapy. This local therapy is sometimes accompanied by systemic chemotherapy and/or hormonal therapy. The five-year survival rate after treatment for early-stage breast cancer is 96 percent.
Breast cancer incidence increases with age, rising sharply after age 40. Roughly 80 percent of invasive breast cancer occurs in women over age 50.
Men can develop breast cancer too, although its incidence is low. In 2001, 1,500 male cases were projected to be diagnosed, and 400 men were projected to die from the disease.
Results of breast cancer research also suggest you should:
Extended Use of Breast Cancer Drug Is Now Suggested
By Andrew Pollack : NY Times : December 5, 2012
The widely prescribed drug tamoxifen already plays a major role in reducing the risk of death from breast cancer. But a new study suggests that women should be taking the drug for twice as long as is now customary, a finding that could upend the standard that has been in place for about 15 years.
In the study, patients who continued taking tamoxifen for 10 years were less likely to have the cancer come back or to die from the disease than women who took the drug for only five years, the current standard of care.
“Certainly, the advice to stop in five years should not stand,” said Prof. Richard Peto, a medical statistician at Oxford University and senior author of the study, which was published in The Lancet on Wednesday and presented at the San Antonio Breast Cancer Symposium.
Breast cancer specialists not involved in the study said the results could have the biggest impact on premenopausal women, who account for a fifth to a quarter of new breast cancer cases. Postmenopausal women tend to take different drugs, but some experts said the results suggest that those drugs as well might be taken for a longer duration.
“We’ve been waiting for this result,” said Dr. Robert W. Carlson, a professor of medicine at Stanford University. “I think it is especially practice-changing in premenopausal women because the results do favor a 10-year regimen.”
Dr. Eric P. Winer, chief of women’s cancers at the Dana-Farber Cancer Institute in Boston, said that even women who completed their five years of tamoxifen months or years ago might consider starting on the drug again.
Tamoxifen blocks the effect of the hormone estrogen, which fuels tumor growth in estrogen receptor-positive cancers that account for about 65 percent of cases in premenopausal women. Some small studies in the 1990s suggested that there was no benefit to using tamoxifen longer than five years, so that has been the standard.
About 227,000 cases of breast cancer are diagnosed each year in the United States, and an estimated 30,000 of them would be in premenopausal women with ER-positive cancer and prime candidates for tamoxifen. But postmenopausal women also take tamoxifen if they cannot tolerate the alternative drugs, known as aromatase inhibitors.
The new study, known as Atlas, included nearly 7,000 women with ER-positive disease who had completed five years of tamoxifen. They came from about three dozen countries. Half were chosen at random to take the drug another five years, while the others were told to stop.
In the group assigned to take tamoxifen for 10 years, 21.4 percent had a recurrence of breast cancer in the ensuing ten years, meaning the period 5 to 14 years after their diagnoses. The recurrence rate for those who took only five years of tamoxifen was 25.1 percent.
About 12.2 percent of those in the 10-year treatment group died from breast cancer, compared with 15 percent for those in the control group.
There was virtually no difference in death and recurrence between the two groups during the five years of extra tamoxifen. The difference came in later years, suggesting that tamoxifen has a carry-over effect that lasts long after women stop taking it.
Whether these differences are big enough to cause women to take the drug for twice as long remains to be seen.
“The treatment effect is real, but it’s modest,” said Dr. Paul E. Goss, director of breast cancer research at the Massachusetts General Hospital.
Tamoxifen has side effects, including endometrial cancer, blood clots and hot flashes, which cause many women to stop taking the drug. In the Atlas trial, it appears that roughly 40 percent of the patients assigned to take tamoxifen for the additional five years stopped prematurely.
Some 3.1 percent of those taking the extra five years of tamoxifen got endometrial cancer versus 1.6 percent in the control group. However, only 0.6 percent of those in the longer treatment group died from endometrial cancer or pulmonary blood clots, compared with 0.4 percent in the control group.
“Over all, the benefits of extended tamoxifen seemed to outweigh the risks substantially,” Trevor J. Powles of the Cancer Center London, said in a commentary published by The Lancet.
Dr. Judy E. Garber, director of the Center for Cancer Genetics and Prevention at Dana-Farber, said many women have a love-hate relationship with hormone therapies.
“They don’t feel well on them but it’s their safety net,” said Dr. Garber, who added that the news would be welcomed by many patients who would like to stay on the drug. “I have patients who agonize about this, people who are coming to the end of their tamoxifen.”
Emily Behrend, who is a few months from finishing her five years on tamoxifen, said she would definitely consider another five years.
“If it can keep the cancer away, I’m all for it,” said Ms. Behrend, a 39-year-old single mother in Tomball, Tex. She is taking the antidepressant Effexor to help control the night sweats and hot flashes caused by tamoxifen.
Cost is not considered a huge barrier to taking tamoxifen longer because the drug, now generic, can be obtained for less than $200 a year.
The results, while answering one question, raise many new ones, including whether even more than 10 years of treatment would be better still.
Perhaps the most important question, however, is what the results mean for postmenopausal women. Even many women who are premenopausal at the time of diagnosis will pass through menopause by the time they finish their first five years of tamoxifen, or will have been pushed into menopause by chemotherapy.
Postmenopausal patients tend to take aromatase inhibitors like anastrozole or letrozole, which are more effective than tamoxifen at preventing breast cancer recurrence, though they do not work for premenopausal women.
Mr. Peto said he thought the results of Atlas study would “apply to endocrine therapy in general," meaning that 10 years of an aromatase inhibitor would be better than five years. Other doctors were not so sure.
Results of some studies looking at 10 years of aromatase inhibitor treatment versus five years should be available in two years, said Dr. Goss of Massachusetts General, who is a leader of one of those studies.
The Atlas study was paid for by various organizations including the United States Army, the British government and AstraZeneca, which makes the brand name version of tamoxifen.
The Latest Mammogram Controversy: Density
Many Women Aren't Told Their Breast Type May Cloud Cancer Screening;
More States Consider Notification
Melinda Beck : WSJ : August 6, 2012
Nancy Cappello had annual mammograms for a decade and each time radiologists noted in their reports that she had dense breast tissue. But doctors never told Ms. Cappello, nor did they warn her that it could make her mammograms less reliable.
When her doctor found a suspicious ridge during a manual exam eight years ago, she had a mammogram and an ultrasound on the same day. The mammogram again spotted nothing amiss, but an ultrasound found a tumor the size of a quarter. Her breast cancer had also spread to 13 lymph nodes.
Ms. Cappello, then 51, was dismayed to learn that the tumor wasn't visible on a mammogram because dense breast tissue like hers can frequently hide cancer from view. "I kept asking my gynecologist, 'Why don't you routinely tell women this?' And the answer I got was, 'That's not the standard procedure,' " she says.
In 2005, while still undergoing chemotherapy, radiation and surgeries, Ms. Cappello, an education administrator in Woodbury, Conn., started a campaign called "Are You Dense?" to educate other women about dense breast tissue.
Comparing Imaging Costs
Based on the national average Medicare reimbursement:
Thanks in part to her efforts, last month, New York became the fourth state, after Connecticut, Texas and Virginia, to require radiologists to inform women if they have dense breasts along with their mammogram results. Similar bills are pending in 12 states and Congress. They face opposition from insurers and major medical groups concerned that the information could raise health-care costs and scare women unduly.
Studies show that having dense breasts raises the risk of developing breast cancer fourfold to sixfold. "It's a greater risk factor than having a mother or sister with the disease," but few women know this, says Deborah J. Rhodes, a preventive medicine specialist at the Mayo Clinic in Rochester, Minn. "Most of the physicians ordering these tests are also in the dark about this and the implications for women," she says.
Ultrasounds and MRIs are much more effective at spotting breast cancer. Studies show that ultrasounds find three to four additional cancers per 1,000 women with dense breasts that mammograms miss. But those tests are usually reserved for women at high risk of developing breast cancer. Using them in addition to mammograms for women with dense breast tissue could add considerably to the cost of screening.
Women's breasts are a mixture of dense tissue and fatty tissue (which is less dense), and generally become more fatty with age. Density can't be determined in a physical exam, only by imaging. An estimated 66% of premenopausal women, and 25% of postmenopausal women, have breasts that are dense enough to interfere with mammogram accuracy, according to a landmark 1996 study.
In studies of thousands of patients, Thomas Kolb, a New York radiologist who specializes in breast-cancer detection, showed that mammograms missed 60% of cancers in women with the densest breast tissue that were found on ultrasound. Other studies have showed similar results.
"I, as a radiologist, have a problem telling a woman with dense breasts that her mammogram is normal when I know it could be inaccurate 60% of the time if she has cancer," says Dr. Kolb.
Still, the American College of Radiology says there isn't enough evidence to recommend that women with dense breasts have routine ultrasound screening.
The American College of Obstetricians and Gynecologists says it is up to radiologists, not the OB-GYNs, to determine whether mammograms are sufficient. ACOG also opposed the bill in New York state because it requires radiologists to advise women with dense breasts that they may have an increased risk of breast cancer.
"Most women of child bearing age will receive this notification and they'll say, 'Oh my God, what should I do now?' " says Donna Montalto, executive director of ACOG's New York chapter. OB-GYNs will likely recommend that they have ultrasounds—but mainly because of the threat of malpractice suits if breast cancer is missed, she says. "That's defensive medicine."
Some physicians think that women with dense breasts should have regular ultrasound screenings—or at least the option to consider it. "The vast majority of women are capable of hearing this information and not freaking out," says the Mayo Clinic's Dr. Rhodes, who is studying a new technology, Molecular Breast Imaging, that uses a tracer substance that makes cancer cells highly visible, and which she says shows promise in detecting cancers in dense breast tissue.
Jean Weigert, an executive with the Radiological Society of Connecticut, lobbied against the notification bill there on the grounds that it would increase costs and anxiety without much benefit. But once it passed, in 2009, she was impressed with its impact. Pooling data on 78,000 women in six different practices, Dr. Weigert found that about half of the women, or 8,651 patients, with dense breast tissue went on to have ultrasounds which found 28 cancers that weren't visible on mammograms. "We are definitely finding more cancers, most of them at very early stages," says Dr. Weigert
Connecticut, the first state to pass a notification bill, also requires insurers to pay for ultrasounds for women with dense breasts. According to Dr. Weigert's analysis, the additional screening for those 8,652 women cost $2.15 million, or $110,000 for each additional cancer found. Finding cancers early saves many times that amount compared with the cost of late-stage cancer treatment, she notes.
The dense-breast debate comes at a time when the value of breast-cancer screening in general is being questioned. The U.S. Preventive Services Task Force in 2009 recommended against annual mammograms for women in their 40s and said that women 50 and older should have them only every other year. (ACOG and many breast-cancer groups still recommend them annually starting at age 40.)
Last week, in an editorial in the British Medical Journal, two Dartmouth researchers accused the advocacy group Susan G. Komen for the Cure of overstating the value of early detection in its ads while not telling women that screening can result in many false alarms and treatments for cancers that might not have been life-threatening. "Everyone agrees that mammography isn't perfect, but it's the best widely available detection tool that we have today," Chandini Portteus, Komen's vice president of research, evaluation and scientific programs, said in a statement. Other experts say that breast-cancer deaths have dropped 30% in the U.S. since 1990, due at least in part to early detection from widespread screening.
Even without legislation, some experts note that women can ask about their breast density, since radiologists routinely report that information to physicians. "If women are at all concerned, after a mammogram, they can call their doctors and say, 'Listen, do I have dense breasts? Do I need anything further?' " says Carol Lee, chair of the American College of Radiology's Breast Imaging Commission.
Dense breast tissue an overlooked risk factor for cancer
By Jeff Donn : Associated Press : Boston Globe : January 18, 2007
Cancer turns up five times more often in women with extremely dense breasts than in those with mostly fatty tissue, a study shows, signaling the importance of a risk factor rarely discussed with patients. On mammograms, fat looks dark, but dense tissue is light, like tumors, so it can hide the cancers. But this study confirms that cancers are also more frequent -- not just hidden -- in women with dense breasts. That means that density is a true risk factor, along with other strong predictors such as age and the genes BRCA1 and 2. Yet specialists say that breast density is rarely considered with other risk factors in discussions between doctors and patients.
"It's been ignored to an absolutely unbelievable degree," said study leader Dr. Norman Boyd at Princess Margaret Hospital in Toronto.
The Canadian study by cancer centers in Toronto and Vancouver focuses on how and when cancers were found over eight years in existing records of 1,112 women collected between 1981 and last year. It is being reported in today's New England Journal of Medicine.
Breast density comes from the presence of more connective, duct-lining and milk-gland tissue than fat. But a woman can't judge her own density; it is routinely evaluated from a mammogram. Previous studies had linked breast density to a higher rate of cancer, pointing to both masking and a separate biological risk. In this study, women with at least 75 percent dense breasts showed five times more likelihood of cancer than women with less than 10 percent density.
The researchers went further by calculating just how many more cancers were found at screening, within the next year, and in the years afterward. Cancers found within a year were considered likely to be present, but masked, during the earlier mammogram. But a true biological risk was seen in cancers discovered by mammogram or long afterward. In this study, cancers were 18 times more likely in women with the densest breasts within the first year after mammograms -- the masking effect.
However, cancers in women with the densest breasts were also more than three times more likely to turn up at the time of screening and after the first year following a mammogram. That confirms and helps quantify the true biological link between density and cancer.
"I think the masking thing is important, and it does happen, but the most important thing is that this is an incredible risk factor," said Dr. Karla Kerlikowske, of the Veterans Affairs Medical Center in San Francisco, who wrote an accompanying editorial. "This probably counts for a large percentage of the cancer that's occurring."
For women, breast cancers are the second most lethal kind after lung cancers. About 1 in 8 women will get invasive breast cancer during her lifetime, according to the American Cancer Society. Last year, about 41,000 US women died of it. Worldwide, it kills about 370,000 women each year. In this study, density of more than 50 percent accounted for 16 percent of all cancers and a quarter in women under age 56.
Robert Smith, a screening specialist at the American Cancer Society, said this study and its predecessors will encourage a rethinking of cancer screening. For now, women can ask their doctor about their breast density based on a mammogram and how it might affect their risk. However, specialists say it's too soon for doctors to provide solid advice to individual patients.
For one thing, quicker, more accurate tools are needed to measure density. Some specialists believe that ultrasound, magnetic resonance imaging, or computerized mammograms may ultimately prove better at finding tumors in very dense breasts, but it's still unclear how much value each might yield for its cost. Some believe lifestyle changes or even preventive drugs may one day be recommended to women with this risk factor.
Reducing Your Risk for Breast Cancer
By Roni Caryn Rabin : NY Times Article : May 13, 2008
Go for regular checkups, do breast self-exams and get your mammograms on time, and chances are you’ll detect breast cancer early on, when it is most treatable. But what about prevention? Short of radical surgery, are there steps you can take to reduce the risk?
Turns out there are.
True, immutable factors like genetics, a family’s medical baggage and just being born female determine much of the risk of breast cancer. And, as with all cancers, that risk increases with age: a 30-year-old woman’s chances of developing breast cancer over a 10-year period are less than half of 1 percent, or 1 in 234, while a 60-year-old has a 3.5 percent risk, or 1 in 28. (The often-heard “one in eight” figure refers to the lifetime risk that women face.)
But there is now solid evidence that lifestyle can play a role as well. Choices that have an effect include how much alcohol a woman drinks (none is best), the amount of physical activity she gets (the more the better) and whether she takes hormones (the less the better). Doctors also urge women to keep their weight down, as obesity increases the risk of developing breast cancer during the postmenopausal years.
“Breast cancer is a disease of how much estrogen you have in your body,” said Heather Spencer Feigelson, strategic director of genetic epidemiology for the American Cancer Society, and these seemingly disparate factors — alcohol, physical activity and hormone pills — affect levels of estrogen and other hormones.
“There are things you can’t change, like when you got your first period, or your family history,” said Dr. Carolyn D. Runowicz, director of the Carole and Ray Neag Comprehensive Cancer Center at the University of Connecticut Health Center in Farmington, Conn., referring to two well-known risk factors, early menstruation and having a close relative with breast cancer. “But you can change a lot about you. Empower yourself with knowledge and information.”
Know your family’s medical history — but even if there is no history of breast cancer, don’t be complacent. Consult a genetic counselor if you are concerned about your family history, and inquire about being tested for the genetic mutations that increase breast cancer risk (more common among Ashkenazi Jews). Do not forget that breast cancer genes come from both sides of the family, not just your mother’s.
Among relatives, “the special red flags” are premenopausal breast cancer, bilateral breast cancer (cancer that appears in both breasts) and ovarian cancer, said Dr. Larry Norton, deputy physician in chief of breast cancer programs at Memorial Sloan-Kettering Cancer Center. But even if no one in the family had breast cancer, that is no guarantee that you are safe, said Dr. Runowicz; in fact, only 10 percent of breast cancer patients have a family history.
Cut down on alcohol, or avoid it altogether. When it comes to breast cancer, studies have been pretty consistent: there is no safe amount of alcohol. Even one glass of wine a day can increase your risk slightly, and the risk climbs with each additional drink. “This is something you can control,” said Jasmine Q. Lew, a student at the Pritzker School of Medicine at the University of Chicago who recently completed a National Institutes of Health study that is one of the largest on the subject. “Women can choose not to drink.”
Exercise, exercise, exercise. Obesity after menopause increases the risk of breast cancer, so try to keep your weight down. But exercise is beneficial regardless of weight, and even a small amount of physical activity may be helpful. “Women who are overweight and exercising are at lower risk than those who are overweight and not exercising; women who are lean and exercising are at lower risk than women who are lean but not exercising,” Dr. Feigelson said. Risk drops with increased hours and strenuousness of exercise, and studies have found that women who do an average of three hours of strenuous exercise a week reduce their risk of breast cancer by 20 percent.
Breast-feed if you can. Early menstruation, late menopause, postponing pregnancy and never having gone through a full-term pregnancy increase the risk of breast cancer, but those factors cannot be changed easily. If you do have a baby, however, you may want to breast-feed, and the longer the better; studies have found that breast-feeding reduces the risk of breast cancer.
Try not to take combined hormone therapy. The recommendation for all hormone therapy is to take the lowest dose for the shortest period necessary. A Women’s Health Initiative study found a slightly higher risk for breast cancer among women who took estrogen with progestin after menopause, and a drop in breast cancer diagnoses since then has been attributed to the fact that many women quit using hormones. (In the same study, women on estrogen-only therapy, which is used by those who have had hysterectomies, did not have a higher breast-cancer risk.) A woman who has recently used birth control pills is also at greater risk; Dr. Norton urges women to find alternative contraceptive methods and avoid so-called natural or herbal hormones as well.
Have regular mammograms, but if you have very dense breast tissue or are at high risk of breast cancer for other reasons, insist on an M.R.I. as well. Having high breast-tissue density can drastically raise your risk of developing breast cancer, as does finding atypical hyperplasia, or abnormal cell growth, which is confirmed by a biopsy. After a mammogram, discuss the results with your physician. “Everyone just wants to hear that it’s negative,” Dr. Runowicz said. But important information can be gleaned even from a negative screening, she said. “Learn about your breast density. If a biopsy shows hyperplasia, your doctor can put you on a chemoprevention program.”
Become familiar with your personal risk factors. Your breast cancer risk could be higher than normal if you are above average height, upper middle class (probably related to the tendency to postpone childbearing and having fewer children), never had a full-term pregnancy or you had children after age 30, or if you ever had endometrial, ovarian or colon cancer or ever had high-dose radiation to the chest, your risk for breast cancer could be higher than average.
Much Wider Use of M.R.I.’s Urged for Breast Exam
By Denise Grady : NY Times article : March 28 2007
Two reports being published today call for greatly expanded use of M.R.I. scans in women who have breast cancer or are at high risk for it.
The recommendations do not apply to most healthy women, who have only an average risk of developing the disease.
Even so, the new advice could add a million or more women a year to those who need breast magnetic resonance imaging — a demand that radiologists are not yet equipped to meet, researchers say. The scans require special equipment, software and trained radiologists to read the results, and may not be available outside big cities.
Breast M.R.I. costs $1,000 to $2,000, and sometimes more — 10 times the cost of a mammogram — so a million more scans a year would cost at least $1 billion. It is sometimes covered by insurance and Medicare, sometimes not.
One report is a set of new guidelines for using M.R.I. in women at high risk for breast cancer, and the other is a study in The New England Journal of Medicine showing that in women who have newly diagnosed cancer in one breast, M.R.I. can find tumors in the other breast that mammograms miss.
M.R.I. has drawbacks. It is so sensitive — much more so than mammography — that it reveals all sorts of suspicious growths in the breast, leading to many repeat scans and biopsies for things that turn out to be benign. For women who are likely to have hidden tumors, the prospect of such false-positive findings may be acceptable. But the risk of needless biopsies and additional scans is not considered reasonable for women with just an average risk of breast cancer, and is the main reason M.R.I. is not recommended for them.
The new guidelines, from the American Cancer Society, are being published in the society’s journal CA: A Cancer Journal for Clinicians. They recommend scans and mammograms once a year starting at age 30 for high-risk women.
High risk is defined as a 20 percent to 25 percent or higher chance of developing breast cancer over the course of a lifetime. (The average lifetime risk for women in the United States is 12 percent to 13 percent.)
The high-risk group includes women who are prone to breast cancer because they have certain genetic mutations, BRCA1 or BRCA2, or those whose mothers, sisters or daughters carry those mutations, even if the woman herself has not been tested. These mutations are not common — they cause less than 10 percent of all breast cancers — but they greatly increase a woman’s risk, to 36 percent to 85 percent.
Women with even rarer mutations, in genes called TP53 or PTEN, are also advised to be screened, as are women who had radiation treatment to the chest between ages 10 and 30, for disorders like Hodgkins disease.
Others at high risk include women from families in which breast cancer is common, especially in their close relatives, even if no genetic mutation has been identified. Women and their doctors can estimate their odds by using one of several online risk calculators that factor in the medical history of both the woman and her family. A simple calculator is available at http://www.cancer.gov/bcrisktool/.
But different calculators can give quite different results, and women may need help from their doctors to interpret the results, said Dr. Elizabeth Morris, a member of the expert panel that drew up the guidelines and director of Breast M.R.I. at Memorial Sloan-Kettering Hospital in Manhattan.
“Just to figure out who should have it will be the hardest thing,” Dr. Morris said. “A lot of that onus is put on the referring physician. A lot of women are going to think they’re high risk, and they’re not.”
The cancer society said that for women with certain conditions, there was not enough information to recommend for or against M.R.I. screening. The uncertain group includes women with very dense breast tissue on mammograms, and women who had breast cancer in the past, or growths called carcinoma in situ or atypical hyperplasia.
Dr. Robert Smith, the cancer society’s director for screening, estimated that the new guidelines would add one million to two million women a year to the number who should have breast M.R.I.
Increased demand for such scans could easily outstrip the capacity, even though the number of centers offering them has increased markedly in the last five years, said Dr. Constance Lehman, another member of the panel that wrote the guidelines and a professor of radiology at the University of Washington. She said professional societies in radiology were scrambling to provide training and accreditation for the scans.
Insurers will probably cover the scans because the new guidelines are based on good evidence and promoted by a respected medical group, said Peter V. Lee, president of the Pacific Business Group on Health, a nonprofit coalition of large buyers of health care that cover about five million people. Huge amounts of money are now wasted on unnecessary M.R.I., Mr. Lee said, adding: “Here we have a case where there’s evidence. Hallelujah! Let’s use it.”
Not every imaging center is qualified to perform such scans, but some that are not up to par may offer it anyway, so patients must beware.
Special equipment is needed: a powerful, “high-field” magnet and a special breast coil to generate a magnetic field around the breast. The scan is done with the woman lying on her stomach on a special table with openings that let the breasts rest in wells surrounded by the coil.
“And you have to make sure they’re doing enough, not one a week, and make sure they have biopsy capability,” Dr. Morris said.
If the breast scan is done at a center that cannot perform biopsies, a woman with a suspicious finding may have to start all over again at another clinic.
The second new report describes a study showing that in women who had cancer in one breast, an M.R.I. scan of the other breast found tumors that mammograms had missed in 3 percent of the women. Researchers say M.R.I. can help women who already have one cancer by detecting a hidden tumor in the other breast, enabling them to have both cancers treated at once instead of having to go through treatment all over again when the second tumor is finally detected.
Research has shown that 10 percent of women who have cancer in one breast will eventually develop it in the other as well.
“This study supports the recommendation that women who are diagnosed with breast cancer consider the benefits of a breast M.R.,” said Dr. Lehman, the senior author of the study. “What we think is most important is that we understand the full extent of a woman’s breast cancer before her therapy is initiated.”
The scans are recommended in newly diagnosed cases, but not for most women who had breast cancer treated in the past.
Currently, women with newly diagnosed cancer in one breast are given mammograms of the other, but only a minority are offered M.R.I., Dr. Lehman said. This year, about 180,000 new cases of breast cancer are expected in the United States.
Some surgeons think every woman with a new diagnosis of breast cancer should have an M.R.I. of the other breast, and some think no one should, Dr. Morris said. She said the scans were most likely to be useful in younger women with breast cancer and dense tissue that hides tumors from mammograms. In older women with small, early tumors and clear mammograms, she said, such scanning is less important.
The study findings will make it harder for insurance companies to refuse to pay for such scans of the second breast in women with breast cancer, said Dr. Etta D. Pisano, another author of the study and a professor of radiology at the University of North Carolina.
The study, conducted at 25 medical centers, included 969 women with recently diagnosed cancer in one breast and a normal mammogram on the other. All were given M.R.I. scans, which discovered cancers in the supposedly healthy breast in 30 women, 3.1 percent of the group. Nearly all the cancers were at an early stage, and were treated at the same time as the ones originally discovered.
Without the scans, Dr. Lehman said, the tumors would not have been found until later, and then the women would have had to go through surgery, and perhaps radiation and chemotherapy as well, all over again. “We know cancers diagnosed later in these women don’t do as well as cancers diagnosed initially,” she said.
But to find 30 cancers, 121 women had biopsies, which were ordered because of abnormalities on M.R.I. That means 91 false-positive scans and biopsies of healthy tissue, and a false-positive rate of about 10 percent. Dr. Lehman said most cancer patients were willing to accept the risk of a false-positive and a biopsy in order to find out whether there was anything to worry about in the other breast.
The study was paid for by the National Cancer Institute.
In New Cancer Guideline, a Host of Uncertainties
By Michael Mason : NY Times Article : April 3, 2007
By using radio waves and magnetic fields to produce richly detailed images of soft tissue, magnetic resonance imaging can uncover breast abnormalities that cannot be seen with an ordinary mammogram.
So after reviewing data published in the last few years on the effectiveness of this technology as a screening tool, the American Cancer Society last week issued new guidelines recommending an annual M.R.I. scan starting at age 30 for women at high risk for breast cancer.
“We have got to change the way we look at these patients and to start treating them differently,” said Dr. D. David Dershaw, director of breast imaging at Memorial Sloan-Kettering Center.
But for many women, the new standards raise difficult questions. For one thing, they apply mainly to the estimated 1.4 million women at high risk of developing breast cancer.
Many women have no idea which risk category they belong to, researchers note. Several studies have found that women tend to overestimate their chances of breast cancer, and the risk models used by clinicians can produce widely varying results.
And it is far from certain that there are enough qualified facilities to handle an influx of high-risk women who may now seek regular M.R.I. screenings.
“From an individual woman’s point of view, I think these guidelines are useless,” said Barbara Brenner, executive director of Breast Cancer Action, an advocacy group in San Francisco. “We don’t have a medical system that can do this. It’s just not the real world.”
Because M.R.I.’s are more sensitive than mammograms or ultrasound, they are more likely to reveal suspicious anomalies that turn out to be benign. Every false positive generates expense, anxiety and treatment that may not be necessary.
“M.R.I. scans send up a lot of red flags,” said Dr. Carl D’Orsi, co-chairman of the American College of Radiology’s breast imaging commission. “Unless there’s a dramatic change in technology or in the cost of the exam, it won’t be appropriate for screening the general public.”
Along with the troublesome false positives, the scans do pinpoint cancer missed by other methods. After Adrienne Evans of Terlingua, Tex., learned from a biopsy that a lump in her left breast was cancer, she had a mammogram and an ultrasound scan. They revealed no other tumors, so Ms. Evans and her doctor agreed that the best treatment would be a simple procedure to remove the lump.
Still, because her breast tissue was unusually dense, the doctor ordered an M.R.I. It revealed a second tumor buried deep in the same breast, a menace that had been invisible on the previous scans.
She opted for an immediate mastectomy, followed by reconstructive breast surgery.
“I think that M.R.I. saved my life,” said Ms. Evans, who is 50. “Without it, my cancer would have gone undetected, and it would have advanced.”
By recommending M.R.I. screenings only for highest-risk women, the scientists writing the new guidelines hope to raise the odds that what is discovered is actually cancer.
Women at high risk include those with mutations of the cancer susceptibility genes BRCA1 and BRCA2, first-degree relatives who have not yet been tested, and those who have undergone radiation therapy to the chest for treatment of conditions like Hodgkin's disease.
By most estimates, women with strong family histories of breast and ovarian cancer also are at high risk, even if they are not known to have a particular gene mutation.
For example, a 35-year-old woman whose father’s sister contracted breast cancer at 29 and whose grandmother contracted it at 35 has an estimated lifetime risk of 31 percent, according to one risk model. She would qualify for regular M.R.I. screenings under the new guidelines.
Not all women at increased risk are being advised to get M.R.I. scans. The new guidelines take an equivocal approach to the evaluation of women at only moderate risk of developing breast cancer — including, surprisingly, those who have survived it. The risk of a second diagnosis is just 10 percent over their lifetimes, not enough to justify regular magnetic resonance screenings.
And though women found to have such precancerous conditions as lobular carcinoma in situ or atypical ductal hyperplasia are also more likely to develop breast cancer, the increased risk is not sufficient to recommend regular M.R.I. screenings, according to the cancer society.
Women who have been told repeatedly that early detection is crucial to surviving breast cancer may find this advice confounding. But it stems partly from the limitations of the current health-care system.
“M.R.I. generates a high number of biopsies for every cancer that you find,” Dr. Dershaw said. “If we did screening with M.R.I. for everyone, we would raise the price of screening 10 times over.” Since that cost may not be reimbursed by insurers or government programs, indiscriminate use of M.R.I. could create a disincentive for screening, compared with less expensive mammography.
In addition, the quality of scans can vary significantly from clinic to clinic, according to some researchers.
The best facilities have dedicated breast coils, which are required for the most accurate screening, and they are able to perform the guided biopsies necessary for diagnosis.
Experienced facilities are uncommon outside metropolitan areas, noted Dr. D’Orsi of the radiology society, so putting the new screening guidelines into effect for high-risk women is likely to prove challenging. Simply reading an M.R.I. scan of the breast is a relatively new skill, as much an art as a science.
“The real issue is what kind of M.R.I. patients will get and how it will be interpreted,” Dr. D’Orsi added. “Now it’s like a perfect storm coming together.”
Benefits of Mammograms
Editorial NY Times, November 6, 2005
Long-simmering doubts about the benefits of mammograms to screen women for breast cancer should be dispelled by a new study conducted by seven major research groups. Mammograms have long been recommended as an effective tool for detecting tiny breast tumors so that they can be treated before they become dangerous. But four years ago, an analysis published in a British medical journal found so many flaws in studies that purported to show a benefit from mammography that the results were deemed virtually meaningless. Other experts agreed that the evidence was shaky, but mainstream cancer and medical organizations remained convinced that mammograms save lives.
Now comes a study, published in The New England Journal of Medicine, that was conducted by research teams including both skeptics about mammograms and true believers. The study sought to estimate the relative importance of screening mammograms and powerful new drugs in producing a 24 percent decline in breast cancer mortality in the United States from 1990 to 2000. Seven research teams each developed statistical models of breast-cancer incidence and mortality and plugged in additional information to tease out the answer.
The results varied widely. One team found screening responsible for 65 percent of the decline and drug therapies a mere 35 percent. Another team gave drugs fully 72 percent of the credit. The other estimates fell in between.
What seems most important is that each team found at least some benefit from mammograms. The likelihood that they are beneficial seems a lot more solid today than it did four years ago, although the size of the benefit remains in dispute.
Women still need to make their own judgments as to whether the usefulness of screening outweighs the risks, which include false positives and possibly needless treatment to remove tiny tumors that might never have caused a problem if left alone. The good news is that women can now be pretty confident that there really are benefits from mammography.
Screening: Breast Cancer History Is a Two-Sided Family Tree
By Eric Nagovery : NY Times article
Doctors who screen women to determine their risk for breast cancer should question them more closely about the history of the disease on their father’s side of the family, researchers say.
A new study finds that women often report fewer paternal cases of breast cancer than maternal ones, even though the numbers should be about the same. As a result, their breast cancer risk may be underestimated.
The researchers, writing in The American Journal of Preventive Medicine, said the findings had implications for both researchers designing studies and doctors treating patients.
“Primary care physicians might pay particular attention to getting information about the father’s side of the family,” they wrote, “since patients may not know that paternal family history is also relevant for their health.”
The researchers, led by John M. Quillin of Virginia Commonwealth University, looked at the results of an earlier study in which more than 800 women who did not have breast cancer were asked about their family history of the disease.
About a quarter reported cancer on their mother’s side or their father’s side. But 16 percent reported maternal cases, while only 10 percent reported paternal ones.
There could be several reasons for the difference, the researchers said. It may be that men are less likely to be told about a breast cancer history in their family — or to pass the information on.
But the study also noted that many women did not know their fathers or have close relationships with them, and the researchers cited government reports that about 14 percent of children did not live with their fathers
The Struggle to Move Beyond ‘Why Me?’
By Alice Lesch Kelly : NY Times Article : May 8, 2007
Six days after my husband and I returned from a trip to Aruba — our first real vacation without our children — my doctor told me I had breast cancer. I had felt a lump in my breast before the trip, but decided to wait to have it checked. I’d had lumps before, and they had always turned out to be nothing. But this one wasn’t nothing. It was Stage 2 invasive ductal carcinoma.
The days after my diagnosis are a blur of doctor visits, tests, sleepless nights, tearful discussions with family members and intense research. I saw doctor after doctor after doctor. They patiently answered my many questions about surgery, chemotherapy, radiation and endocrine therapy. But none of them could answer the most important question of all: Why the hell did I get breast cancer?
I was 41. I had no family history of breast cancer and no major risk factors. Tests showed I did not carry breast cancer genes. I exercised regularly and ate healthfully. I did not smoke. I had yearly mammograms. The only thing I’d done “wrong,” according to the standard list of risk factors for breast cancer, was having my first baby after age 30.
And yet all I got from my doctors when I asked them why was a shrug. “It just happens,” a surgeon told me. “You can do everything right and still get breast cancer. Unfortunately, you drew the short straw.”
That explanation didn’t cut it for me. I needed to know why.
As a freelance health writer, I’m accustomed to tracking down the answers to vexing medical questions. So I set out in search of an answer. I examined studies, pored over articles in medical journals, spoke with experts and joined a support group with women who knew so much about breast cancer they could have passed board certification exams.
Meanwhile, I underwent my treatment — three operations, eight sessions of dose-dense chemotherapy and six weeks of daily radiation treatments. I lost part of my breast, all of my hair and most of my sense of security. And still no answer to my question.
Not long after my treatment ended, I found myself in a hospital elevator with a bald woman. I had no hair at that time, either, so we started to chat. (It’s amazing how cancer brings people together — I’ve had deep, 45-minute conversations with complete strangers in waiting rooms.)
“What have you got?” she asked me. We were like prisoners in the same jail comparing crimes. o satisfactory
“Stage 2 breast cancer,” I told her.
“I’m Stage 4 ovarian,” she said.
I could tell by the look on her face that I wasn’t doing a very good job of concealing the look on my face. We both knew that her prognosis was not good. But she wasn’t grieving. She seemed happy.
“When I was diagnosed, the doctors told me I had two months to live,” she said with a huge grin. “That was more than three years ago.”
We stood in the damp parking garage, talking. She is a single mother with two teenage children. She gets chemo every couple of weeks and works full time because she needs the money, and the health insurance. As we chatted, I realized that if she weren’t bald, I would never know she was battling a terminal illness.
“How do you do it?” I asked her. “How do you live each day with cancer hanging over your head?”
She smiled, understanding. “I treat every day as an adventure, and I refuse to let anything make me sad, angry or worried,” she replied. “I live for the day, which is something I never did before. Believe it or not, I’m happier now than I was before I was diagnosed.”
She wasn’t spending her time tracking down studies and agonizing over statistics. She wasn’t sitting with her head in her hands, asking why, why, why. No, she didn’t know why she got cancer, but she realized that nothing would be different even if she did.
I thought about her for days. Gradually I began to understand. The only answer to the question “Why me?” is this: Because bad stuff happens to everyone, and this is what happened to me. One of my closest friends struggled with infertility. That’s her short straw. Another friend’s marriage fell apart. Another friend gave birth to a stillborn child. Look closely enough and you’ll see that everyone has a short straw or two in their lives.
I’ll never know why I got cancer. What I do know is that the sooner I let go of the need to find something or someone to blame, the sooner I’ll be able to put cancer behind me and enjoy life, however long or short it may be. Only when I accept the sometimes cruel randomness of fate will I be able to call myself a survivor.
Alice Lesch Kelly is a freelance health writer based in Newton, Mass.
Herceptin : Cancer Drug May Elude Many Women Who Need It
By Andrew Pollack : NY Times Article : June 12, 2007
The breast cancer drug Herceptin is considered the model for the future of medicine tailored to each individual. The drug is given only to the 20 percent of breast cancer patients whose tumors have a particular genetic characteristic.
But now, nearly a decade after the drug’s approval, evidence is emerging that the testing of the tumors can be highly inaccurate or that the wrong cutoff values are being used to determine who qualifies for treatment.
That could mean that as many as 40 percent of women with early breast cancer might benefit from the drug but are not getting it, some experts say. Yet other women may be paying for the drug and risking its side effects unnecessarily.
“This has major practice-changing potential,” Dr. James H. Doroshow of the National Cancer Institute said in a commentary after one presentation at the American Society of Clinical Oncology meeting here last week. But he added that the data were too preliminary to justify changing treatment patterns just yet.
Herceptin, also known as trastuzumab, works by blocking Her2, a protein that can spur growth of tumor cells. It is given only to women whose tumors have abundant amounts of the protein. There are two tests used to determine this. One looks at the amount of the protein on the surface of a sample of tumor cells. The other looks for extra copies of the gene that governs the production of Her2.
But two studies discussed at the oncology meeting found that patients who were considered Her2-negative even using both tests benefited from Herceptin.
Both studies reanalyzed tumor samples from earlier clinical trials showing that Herceptin, if used after a tumor is removed by surgery, cuts the risk of the cancer’s recurring by half. For a woman to have entered those trials, her tumor had to be classified as Her2-positive by a local clinical laboratory.
But scientists have now gone back and retested those preserved tumor samples and found that as many as 20 percent of them were actually Her2-negative. Yet the women with those tumors also experienced a reduction in cancer recurrence from Herceptin, in some cases as great as that in the Her2-positive women.
“This is a revolution compared to what we believed before,” said Dr. Edith A. Perez of the Mayo Clinic, who presented one of the studies. She said the findings raised questions of whether women who were Her2-negative should be tested again.
Some experts were skeptical, saying the number of patients in the two studies was too small to draw firm conclusions. Also, they said, it was not clear if those women were truly Her2-negative, since they had tested positive by the local laboratory.
Dr. Daniel F. Hayes, a breast cancer specialist at the University of Michigan who helped develop guidelines for Her2 testing, said it would be unwise to start giving Herceptin to Her2-negative women because the drug was expensive and raised the risk of heart failure.
But he said the studies called attention to the inconsistent quality of Her2 testing in many small laboratories. Laboratories can use commercially available tests or develop their own.
Dr. Soonmyung Paik, who presented the second study at the cancer conference, said the problem might lie not in sloppy testing but rather in the cutoff used to determine which women get Herceptin.
Dr. Paik, who is with the National Surgical Adjuvant Breast and Bowel Project, said that about 40 percent of women had intermediate levels of Her2. They are now classified as negative but might still derive some benefit from the drug. On the other hand, he said, many women who are Her2-positive do not benefit from Herceptin. So better ways are needed to determine who should be treated.
“To me, the take-home message is that we don’t have a perfect test, unfortunately,” Dr. Paik said.
Dr. Pamela M. Klein, an executive at Genentech, the manufacturer of Herceptin, said the company was continuing to explore how to best identify patients for the drug.
The fact that this uncertainty is occurring so long after the 1998 approval of Herceptin — the paragon of “personalized medicine” — suggests that it will not be so easy to tailor other drugs to patients based on gene or protein tests.
It left some doctors at the conference incredulous and uncertain how to treat their patients.
“Here we are, 10 years into it,” said Dr. Marc L. Citron, an oncologist in Lake Success, N.Y., “and we don’t know how to test for it.”
Thriving After Life’s Bum Rap
By Jane E. Brody : NY Times Article : August 14, 2007
Can getting cancer make you happy? For Betty Rollin, survivor of two breast cancers, there’s no question about it. In her newest book, “Here’s the Bright Side,” Ms. Rollin recounts:
“I woke up one morning and realized I was happy. This struck me as weird. Not that I didn’t have all kinds of things to be happy about — love, work, good health, enough money, the usual happy-making stuff. The weird part is, I realized that the source of my happiness was, of all things, cancer — that cancer had everything to do with how good the good parts of my life were.”
Her realization is hardly unique. I have met and read about countless people who, having faced life-threatening illness, end up happier, better able to appreciate the good things and people in their lives, more willing to take the time to smell the roses.
As Ms. Rollin put it: “It turns out there is often — it seems very often — an astonishingly bright side within darkness. People more than survive bum raps: they often thrive on them; they wind up stronger, livelier, happier; they wake up to new insights and new people and do better with the people around them who are not new. In short, they often wind up ahead.”
This is not to suggest that battling cancer is pleasurable. Frustration, anger and grief are natural reactions. Cancer forces people to put their lives on hold. It can cause considerable physical and emotional pain and lasting disfigurement. It may even end in death.
But for many people who make it through, and even for some who do not, the experience gives them a new perspective on life and the people in it. It is as if their antennas become more finely tuned by having faced a mortal threat.
As a woman with incurable ovarian cancer recounted this spring in The New York Times: “I treat every day as an adventure, and I refuse to let anything make me sad, angry or worried. I live for the day, which is something I never did before. Believe it or not, I’m happier now than I was before I was diagnosed.”
Sometimes such changes happen to those who live through the cancer experiences of others. My mother died at age 49 of ovarian cancer, and I went off to college thinking that every moment was precious, to be used productively both for personal betterment and for what I could offer to the world. At 18 I wrote a speech on preparing one’s own epitaph — about being able to say that however long your life, you lived it fully and made it count for something meaningful.
Now, 48 years later, as people I know succumb to intractable illness or sudden death, I am even more attuned to the need to savor every moment and do whatever I can to make the world a better place and nurture relationships with friends and family.
Michael Feuerstein, a clinical psychologist and author with Patricia Findley of “The Cancer Survivor’s Guide,” was 52 when he was told he had an inoperable brain tumor and was given a year to live. But Dr. Feuerstein didn’t die — he survived extensive debilitating treatment and gained a new outlook.
He wrote: “I now realize that I am fortunate. Now, after the cancer, I find I can more easily put life in perspective. I re-evaluated my workload, opting to spend more time at home. I take more time for what matters to me most: my wife and my children and grandchild. I also allocate time to better understand cancer survivorship from a scientific point of view, so I can help others in my situation translate this work into useful answers to the question, ‘now what?’ I am optimistic about the future and excited to leave my unique mark on the world.”
‘A Second Life’
When it comes to leaving a mark on the world, Lance Armstrong takes first prize. After surviving treatment for testicular cancer that had spread to his lungs and brain, Mr. Armstrong went on to win the Tour de France a record seven consecutive times.
“There are two Lance Armstrongs, precancer and post,” he recounted in his 2001 memoir, “It’s Not About the Bike: My Journey Back To Life.” “In a way, the old me did die, and I was given a second life.” He created a foundation to inspire and empower people affected by cancer, helping them live life on their own terms.
“Cancer was the best thing that ever happened to me,” he said. “I don’t know why I got the illness, but it did wonders for me, and I wouldn’t want to walk away from it.”
Likewise, Fran Lenzo wrote in the magazine Coping: “Breast cancer has given me a new life. Breast cancer was something I needed to experience to open my eyes to the joy of living. I now see more of the world than I was choosing to see before I had cancer. The things that once seemed so important, like keeping a clean home, are less important. My priorities now are to enjoy everything around me to the utmost. Breast cancer leaves me no time for personality conflicts, arguments, debates or controversy. Breast cancer has taught me to love in the purest sense.”
Finding Happiness
There’s no question that cancer, whether curable or ultimately fatal, changes lives. It forces some people to give up careers and may jeopardize their ability to earn a living. It leaves some people disabled and unable to pursue athletic or other ambitions requiring physical prowess. It leaves some people unable to bear or father children. Yet, time after time, even people who have lost so much find new and often better sources of fulfillment.
Recurring cancer and the extensive treatment it required forced Dr. Wendy Schlessel Harpham of Dallas to give up her beloved medical practice. So she turned her sights to writing, producing book after book that can help people with cancer achieve the best that medicine and life can offer them.
Dr. Harpham is a 16-year survivor of recurrent chronic lymphoma. In her latest book, “Happiness in a Storm: Facing Illness and Embracing Life as a Healthy Survivor,” she states: “Without a doubt, illness is bad, yet survivorship — from the time of diagnosis and for the balance of life — can include times of great joy among the hardships. You can find happiness. Chances are the opportunities for happiness are right in front of you.”
She suggests creating a “personal happiness list” to help you remember favorite pastimes and reintroduce former delights into your life. Or perhaps you might want to explore activities that in your precancer life, you thought you had no time for, like studying a foreign language, traveling for pleasure or spending more time with friends.
“You might need to explore different ways of seeing yourself and the world around you,” Dr. Harpham writes. “In doing so, you discover new types of happiness waiting to be tapped, such as the happiness of sharing invigorating ideas and nascent hopes with new friends, or the happiness of knowing love in a whole new way.
“Happiness in a storm,” she concludes, “is never about enjoying your illness but embracing your life within the limits of your illness, and figuring out how to feel happy whenever possible.”
How to deal with questions about your condition.
"I am undergoing treatment for breast cancer. My problem is that, while I've been open about the situation, I don't always wish to discuss it or my frame of mind. Kind souls approach constantly and ask how I'm doing. Sometimes I'm open to chatter; other times I'm on that fine line between a frozen face and a teary meltdown. Is there a polite way to say, "Please bear with me; I can't discuss it at the moment" without being rude? It gets tricky, particularly at the office."
ANONYMOUS in Wakefield
"Anonymous, I have so little to add to your brave and honest letter! The answer you would like to give people is entirely polite and appropriate. I'm running your letter not because I think you need my help or advice, but so that others in your situation - and those who care about them - can learn from what you said.
Sick people get poked and prodded and asked all kinds of invasive questions by medical professionals, constantly. It is no wonder that they want some bodily integrity and personal privacy when they are in their homes, or workplaces, or anywhere else. If you have a friend, colleague, or neighbor who is living with a difficult illness, don't interrogate him or her at every encounter. It's better to say something like "I know you're going to have your good days and your bad ones. I want you to know that I'm concerned, but I'm not going to ask a lot of questions, because I want to respect your privacy. But I'm here whenever you want to talk." Then just be plain old extra-nice - call a sick neighbor before making a grocery run to see if you can pick something up for him; clip a cartoon that a sick co-worker might enjoy and leave it on her desk; be sensitive to their moods.
And if you are the sick person, take charge. This is your illness. You don't get to be in control of a whole lot, but you do get to be in control of how and when you talk about it. Let the people around you know that you'll tell them when and if things change, and that you know they are there for you when you need them. In a group setting, such as an office, it might also be helpful to have someone (the boss or a close colleague) run interference for you. This person can be your deputy to remind other people of how you'd like to be treated or to pass on the information that you want disseminated."
For Cancer Patients, Empathy Goes a Long Way
By Denise Grady : NY Times Article : January 8, 2008
Four years ago, my sister found out she had two types of cancer at the same time. It was like being hit by lightning — twice.
She needed chemotherapy and radiation, a huge operation, more chemotherapy and then a smaller operation. All in all, the treatment took about a year. Thin to begin with, she lost 30 pounds. The chemo caused cracks in her fingers, dry eyes, anemia and mouth sores so painful they kept her awake at night. A lot of her hair fell out. The radiation burned her skin. Bony, red-eyed, weak and frightfully pale, she tied scarves on her head, plastered her fingers with Band-Aids and somehow toughed it out.
She saw two doctors quite often. The radiation oncologist would sling her arm around my sister’s frail shoulders and walk her down the corridor as if they were old friends. The medical oncologist kept a close watch on the side effects, suggested remedies, reminded my sister she had good odds of beating the cancer and reassured her that the hair would grow back. (It did.)
People in my family aren’t huggy-kissy types, but my sister greatly appreciated the warmth and concern of those two women. She trusted them completely, and their advice. Now healthy, she says their compassion played a big part in helping her get through a difficult and frightening time.
Research supports the idea that a few kind words from an oncologist — what used to be called bedside manner — can go a long way toward helping people with cancer understand their treatment, stick with it, cope better and maybe even fare better medically.
“It is absolutely the role of the oncologist” to provide a bit of emotional support, said Dr. James A. Tulsky, director of the Center for Palliative Care at Duke University Medical Center.
But in a study published last month in the Journal of Clinical Oncology, Dr. Tulsky and other researchers found that doctors and patients weren’t communicating all that well about emotions.
The researchers recorded 398 conversations between 51 oncologists and 270 patients with advanced cancer. They listened for moments when patients expressed negative emotions like fear, anger or sadness, and for the doctors’ replies.
A response like “I can imagine how scary this must be for you” was considered empathetic — a “continuer” that would allow patients to keep expressing their emotions. But a comment like “Give us time; we are getting there” was labeled a “terminator” that could shut the patient down.
The team found that doctors used continuers only 22 percent of the time. Male doctors were worse at it than female ones: 48 percent of the men never used continuers, as opposed to 20 percent of the women.
Surprisingly, Dr. Tulsky said, the patients didn’t bring up emotions that often — in only 37 percent of the conversations.
“That’s extraordinary,” he said. “These are advanced cancer patients.”
The reason is not clear, but he said the patients might not expect emotional support from doctors. Feelings were most often discussed when both doctor and patient were female, and younger doctors who considered themselves more “socioemotional” than “technical” gave empathetic replies more often.
One doctor who was especially good with patients, and who often consulted on very serious cases, opened discussions with new patients by saying, “Tell me what you understand about your illness,” Dr. Tulsky said. And when patients wept, this doctor would pause and wait until they were ready to continue the discussion.
By contrast, with other doctors, Dr. Tulsky said, “There were a number of times when patients brought up emotional content and it went right by the doctors.”
For instance, a patient would say, “I’m scared,” and the doctor would go off on a “scientific riff” about the disease, Dr. Tulsky said, adding, “We saw that a lot.”
The doctors don’t lack empathy, he said. They just have trouble expressing it.
“Oncologists care deeply for their patients,” said Kathryn I. Pollak, the first author of the study and a social psychologist at Duke. “It’s clear from listening to the tapes.”
Cancer patients and oncologists have unique, intense relationships, she said, because the patients are fighting for their lives.
Even so, oncologists sometimes miss signs of distress, particularly if those signs are indirect, she said. For example, a patient may ask how big the tumors are, and the doctor may answer in millimeters — when the patient really wants to know: “Is the cancer getting worse? Am I dying?”
The good news, she and Dr. Tulsky said, is that most doctors can be taught to respond in more helpful ways. Brief, empathetic responses will suffice, the researchers said; they are not recommending extensive counseling or endless dialogue.
Patients may benefit from some coaching, too. It’s perfectly reasonable, Dr. Tulsky said, to talk to an oncologist about sadness or fears about treatment, and to ask for help.
“You’re vulnerable when you express your emotions,” Dr. Pollak said. “But I would advise patients to be as direct as possible.”
Breast Cancer Overview
Breast cancer is a cancer that starts in the tissues of the breast.
The disease, it has become clear, does not always behave in a uniform way. It’s not even one disease. There are at least four genetically distinct breast cancers. They may have different causes and definitely respond differently to treatment. Two related subtypes, luminal A and luminal B, involve tumors that feed on estrogen; they may respond to a five-year course of pills like tamoxifen or aromatase inhibitors, which block cells’ access to that hormone or reduce its levels. In addition, a third type of cancer, called HER2-positive, produces too much of a protein called human epidermal growth factor receptor 2; it may be treatable with a targeted immunotherapy called Herceptin. The final type, basal-like cancer (often called “triple negative” because its growth is not fueled by the most common biomarkers for breast cancer — estrogen, progesterone and HER2), is the most aggressive, accounting for up to 20 percent of breast cancers. More prevalent among young and African-American women, it is genetically closer to ovarian cancer.
Many breast cancers are sensitive to the hormone estrogen. This means that estrogen causes the breast cancer tumor to grow. Such cancer is called estrogen receptor positive cancer or ER positive cancer.
Some women have what's called HER2-positive breast cancer. HER2 refers to a gene that helps cells grow, divide, and repair themselves. When cells have too many copies of this gene, cells -- including cancer cells -- grow faster. Experts think that women with HER2-positive breast cancer have a more aggressive disease and a higher risk of recurrence than those who do not have this type.
Alternative Names
Cancer - breast; Carcinoma - ductal; Carcinoma - lobular
Causes
Over the course of a lifetime, 1 in 8 women will be diagnosed with breast cancer.
Risk factors
you cannot change include:
The National Cancer Institute provides an online tool to help you figure out your risk of breast cancer. See: www.cancer.gov/bcrisktool
Symptoms »
Early breast cancer usually does not cause symptoms. This is why regular breast exams are important. As the cancer grows, symptoms may include:
Symptoms of advanced breast cancer may include:
Exams and Tests »
The doctor will ask you about your symptoms and risk factors, and then perform a physical exam, which includes both breasts, armpits, and the neck and chest area. Additional tests may include:
Breast cancer stages range from 0 to IV. Breast cancer that has not spread is called ductal carcinoma in situ (DCIS), or noninvasive breast cancer. If it spreads, the cancer is called invasive breast cancer. The higher the number, the more advanced the cancer.
In-Depth Diagnosis »
Treatment »
Treatment is based on many factors, including type and stage of the cancer, whether the cancer is sensitive to certain hormones, and whether or not the cancer overproduces (overexpresses) a gene called HER2/neu.
In general, cancer treatments may include:
Targeted therapy, also called biologic therapy, is a newer type of cancer treatment. This therapy uses special anti-cancer drugs that identify certain changes in a cell that can lead to cancer. One such drug is trastuzumab (Herceptin). For women with stage IV HER2-positive breast cancer, Herceptin plus chemotherapy has been shown to be work better than chemotherapy alone. Studies have also shown that in women with early stage HER2-positive breast cancer, this medicine plus chemotherapy cuts the risk of the cancer coming back by 50%.
Cancer treatment may be local or systemic.
In-Depth Treatment »
Support Groups
Talking about your disease and treatment with others who share common experiences and problems can be helpful. See: Cancer support group
Outlook (Prognosis)
How well you do after being treated for breast cancer depends on many things. The more advanced your cancer, the poorer the outcome.
The 5-year survival rate refers to the number of patients who live at least 5 years after their cancer is found. According to the American Cancer Society (ACS), the 5-year survival rates for persons with breast cancer that is appropriately treated are as follows:
New, improved treatments are helping persons with breast cancer live longer than ever before. However, even with treatment, breast cancer can spread to other parts of the body. Sometimes, cancer returns even after the entire tumor is removed and nearby lymph nodes are found to be cancer-free.
You may experience side effects or complications from cancer treatment. For example, radiation therapy may cause temporary swelling of the breast, and aches and pains around the area. Ask your doctor about the side effects you may have during treatment.
When to Contact a Medical Professional
Contact your health care provider for an appointment if:
Many risk factors -- such as your genes and family history -- cannot be controlled. However, a healthy diet and a few lifestyle changes may reduce your overall chance of cancer in general.
Breast cancer is more easily treated and often curable if it is found early.
Early detection involves:
Women between the ages 20 and 39 should have a doctor examine their breasts at least once every 3 years.
After age 40:
The Price of Beauty
Some Hidden Choices in Breast Reconstruction
By Natasha Singer
For many cancer patients undergoing mastectomies, reconstructive breast surgery can seem like a first step to reclaiming their bodies.
But even as promising new operations are gaining traction at academic medical centers, plastic surgeons often fail to tell patients about them. One reason is that not all surgeons have trained to perform the latest procedures. Another reason is money: some complex surgeries are less profitable for doctors and hospitals, so they have less of an incentive to offer them, doctors say.
“It is clear that many reconstruction patients are not being given the full picture of their options,” said Diana Zuckerman, the president of the National Research Center for Women and Families, a nonprofit group in Washington.
One patient, Felicia Hodges, a 41-year-old magazine publisher in Newburgh, N.Y., chose a double mastectomy after she was found to have cancer of the right breast in 2004. She consulted a plastic surgeon, who offered her only reconstruction with breast implants, she said.
Ms. Hodges chose implants filled with saline, a procedure for which more than a third of reconstruction patients underwent a follow-up operation, studies show.
Ms. Hodges developed wound-healing problems that required her surgeon to remove her right implant, and she was left with a concave chest with a quarter-size hole in it, she said; she described the experience as “worse than the mastectomy.”
Then Ms. Hodges discovered a chat room on the patient-information Web site breastcancer.org, where women share detailed information about breast reconstruction beyond what they may have heard from their doctors.
Ms. Hodges learned of newer, more complex procedures that involve transplanting a wedge of fat and blood vessels from the abdomen or buttocks, which would be refashioned to form new breasts.
“It’s unfortunate that a lot of general surgeons, breast surgeons and plastic surgeons don’t mention it,” said Ms. Hodges, who underwent one of the surgeries, known as a GAP flap, last year. A lifelong athlete and a karate enthusiast, she is now back at her dojo.
To raise awareness of breast reconstruction and to market it to patients, the American Society of Plastic Surgeons has adopted the vocabulary of the movement to support a woman’s freedom to choose an abortion, adjusting it for women with breast cancer. Although women “don’t choose their diagnosis, they can choose to go ahead with reconstruction or not, and with the aid of a knowledgeable plastic surgeon they can choose what their options might be,” Dr. Linda G. Phillips, a plastic surgeon in Galveston, Tex., said in a telephone news conference organized by the plastic surgery society to mark Breast Cancer Awareness Month in October. “Then they have that much more power over their lives if they have that power to choose.”
But for many patients, the options may be limited because their doctors are not proficient in the latest procedures. Dr. Michael F. McGuire, the president-elect of the American Society of Plastic Surgeons, said it is not unusual for surgeons to omit telling patients about operations they do not perform. He compared the rise of more complex breast reconstruction to the advent in the late 1980s of minimally invasive laparoscopic surgery of the gallbladder.
“At the time, only a small percentage of surgeons were doing them and doing them well,” said Dr. McGuire, who is chief of plastic surgery at St. Johns Hospital in Santa Monica, Calif. “If you were not familiar with laparoscopic gallbladder surgery, you were still doing it the traditional way with an open great big scar across the abdomen.”
Uneven information about reconstructive options is a subset of a larger problem, said Dr. Amy K. Alderman, an assistant professor of plastic surgery at the University of Michigan Medical School in Ann Arbor. Only one third of women undergoing operations for breast cancer said their general surgeons had discussed reconstruction at all, according to a study by Dr. Alderman of 1,844 women in Los Angeles and Detroit that was published in February in the journal Cancer.
“In the big picture, it would be great if we could just get doctors to tell people they have an option of reconstruction,” Dr. Alderman said.
Once patients are so informed, she added, plastic surgeons should tell them of options beyond implants. “The next hurdle would be letting them know that using their own tissue is an option, because my guess is that they are not even getting that far in the discussion,” Dr. Alderman said.
About 66,000 women in the United States had mastectomies in 2006, the latest figures available, according to the federal government. And about 57,000 women had reconstructive breast surgery last year, according to estimates from the plastic surgery society.
For many of these women, the operations were more about feeling whole again than about restoring their appearance.
Implant surgery is the most popular reconstruction method in the United States. Often performed immediately after a mastectomy, it initially involves the least surgery — usually a short procedure to insert a temporary balloonlike device called an expander — and the shortest recovery time.
But implants come with the likelihood of future operations. Within four years of implant reconstruction, more than one third of reconstruction patients in clinical studies had undergone a second operation, primarily to fix problems like ruptures and infections, and a few for cosmetic reasons, according to studies submitted by implant makers to the Food and Drug Administration. (Reconstructive patients are more likely to develop complications after implant surgery than cosmetic patients with healthy breast tissue.)
Complication rates for newer flap procedures like the one Ms. Hodges had have not been well studied, though many surgeons say they are less likely to require follow-up operations. The most common flap procedure, named a TRAM flap, for the rectus abdominis muscle, cuts away a portion of abdominal fat, as well as underlying muscle containing blood vessels, and uses the tissue to rebuild a breast. The vessels provide a blood supply for the new breast mound. The procedure promises a more lifelike look and feel, but it carries a risk of a weaker abdominal wall and hernia.
Another flap method, the DIEP free flap, is the newest and most intricate, named for the abdomen’s deep inferior epigastric perforator vessels. It involves moving abdominal fat and blood vessels, but no muscle. The DIEP flap theoretically holds out the promise of a reduced likelihood of abdominal problems. But Dr. Alderman cautioned that researchers have not yet conducted rigorous national studies that would establish a complication rate. Sometimes the flaps fail and need to be surgically removed.
All breast reconstructions involve a tradeoff, said Dr. Scott L. Spear, the chief of plastic surgery at Georgetown University Hospital in Washington. “The implants have a lower investment in the short term and a longer-term higher risk of having to redo it,” said Dr. Spear, who is a paid consultant to the implant maker Allergan. “The flaps have a bigger investment in the short run, but you are less likely to revise it in the long run.”
Dr. Spear said plastic surgeons sometimes fail to mention the flap options for the simple reason that implant surgery can be more profitable. “It’s really embarrassing to say so, but, from a purely selfish point of view, if you are looking at insurance reimbursement for TRAM and DIEP flaps, it’s a loss leader,” Dr. Spear said. “They really require so much time and effort that a surgeon thinks, ‘Man, I can’t afford to do this.’ ”
Nevertheless, Georgetown, long a center of expertise for implant reconstruction, recently hired a plastic surgeon who specializes in the more complicated tissue flaps.
A typical surgeon in Manhattan charges insurers about $7,000 for a one-hour implant reconstruction, but for a DIEP procedure that takes 6 to 12 hours, the going rate is $15,500.
Although health insurers are required by federal law to cover reconstructive breast surgery after mastectomies, the government does not set private insurance rates. Flap reconstruction typically requires a higher out-of-pocket co-payment than implant surgery.
“In certain geographical areas where it is badly reimbursed, it’s a disincentive for plastic surgeons even to do the work,” said Dr. Richard A. D’Amico, a past president of the American Society of Plastic Surgeons, speaking of the flap procedures.
Dr. Stephen R. Colen, the chairman of plastic surgery at Hackensack University Medical Center in New Jersey, said plastic surgeons might also not inform patients about the flap procedures because they lacked the advanced training in microvascular surgery needed to perform them.
“A lot of patients are offered implants because the surgeon does not know how to do the flap, and then the implant fails and they need the flap anyway,” Dr. Colen said.
To counter doctors who might routinely steer patients to implants, Dr. Colen started a program at his hospital in which women can meet directly with an impartial physician’s assistant, who goes over the benefits and drawbacks of reconstruction methods.
“We sort of wanted to take the flow of the patient out of the control of the physician and put it in the hands of a medical person who has no personal or financial interest,” Dr. Colen said.
Dotti Campbell, a retired nurse in Crossville, Tenn., said the plastic surgeon who performed her breast reconstruction after a mastectomy offered her only an implant. “That was his procedure,” said Ms. Campbell. Her first implant developed hardened scar tissue and required replacement. Her replacement implant ruptured. Now she is going to have an operation to replace the second implant, she said.
The DIEP flap was developed by Dr. Robert J. Allen, a plastic surgeon in New York, New Orleans and Charleston, S.C., in 1992. Now surgeons at hospitals including the University of Pennsylvania Health System in Philadelphia and Beth Israel Deaconess Medical Center in Boston specialize in the procedure.
Dr. Allen and Dr. Joshua L. Levine, who operate together in Manhattan, often recommend a prospective patient talk at length with patients of theirs who have had a successful flap procedure, like Ms. Hodges, the magazine publisher and karate student, as well as with those whose first flap reconstructions failed and required a second procedure.
“Patients should not necessarily accept the first thing they hear as the end-all, because that is not necessarily the full story,” Dr. Allen said.
Mammography is the most effective way of detecting breast cancer early.
Certain women at high risk for breast cancer may have a breast MRI along with their yearly mammogram. Ask your doctor if your need an MRI.
Screening for breast cancer is a topic filled with controversy. A woman needs to have an informed and balanced discussion with her doctor, along with doing additional reading and researching on her own, to determine if mammography is right for her.
Tamoxifen is approved for breast cancer prevention in women aged 35 and older who are at high risk.
Women at very high risk for breast cancer may consider preventive (prophylactic) mastectomy, which is the surgical removal of the breasts. Possible candidates for this procedure may include those who have already had one breast removed due to cancer, women with a strong family history of breast cancer, and persons with genes or genetic mutations that raise their risk of breast cancer.
Invasive Breast Cancer Self Assessment Risk Calculator :
http://www.cancer.gov/bcrisktool/
The New Front in Breast Cancer: After Treatment Ends
By Melinda Beck : WSJ : October 11, 2011
The mastectomy, chemotherapy, radiation and hormone treatments are behind them. Now, the growing ranks of breast cancer survivors face long-term issues that are often overlooked.
Paige Capossela GreenCarie Capossela, 43, of Wellesley, Mass., is one of 2.5 million breast-cancer survivors in the U.S. She co-founded a program for young breast-cancer patients at Dana-Farber Cancer Institute. Ms. Capossela is shown here with her husband, Rob Adler, and kids, Brennan and Sari.
"The second-hardest phase—after the initial diagnosis—is the minute your treatment ends," says Carie Capossela, 43 years old, who marked 10 years as a breast-cancer survivor in June. "The reality sets in that you have to live with this the rest of your life and the safety net is gone. That's when you really freak out."
Despite all the pink ribbons and billions spent on breast-cancer research, there is surprisingly little data on issues that linger or emerge for the 10, 15 or more years after treatment ends. Although the odds of relapse fall with time, they never completely disappear.
Some patients who had treatments years ago are encountering delayed side effects such as heart problems, nerve damage, osteoporosis and secondary cancers. Survivors say some of the toughest issues are social and emotional, according to a survey of 1,043 breast-cancer patients to be released Tuesday by the nonprofit Cancer Support Community (CSC) with funding from Susan G. Komen for the Cure.
Mimi FerraroMimi Ferraro, 35, of Brooklyn, N.Y., was diagnosed in 2006. She now is on a vegan diet and teaches yoga to other women with cancer.
Nearly 90% of respondents said they had at least one physical, psychological or social problem that was moderate to severe. Mentioned most frequently were fatigue, sexual dysfunction and sleep issues. What's more, 24% of those surveyed (almost all women, with an average age of 55 and averaging 5.6 years since diagnosis) reported being depressed—about twice the national rate.
The survey also highlighted the need to give survivors better guidance for the years ahead. Only 10% of respondents had received a "survivorship care plan" summarizing what past tests and treatments they had, what side effects to expect, what lifestyle changes to make and where to obtain follow-up care—even though 96% said they wanted one.
"Patients feel like they are walking out of active treatment and walking off a cliff," says Kim Thiboldeaux, president and CEO of the Cancer Support Community. "They're wondering, 'Am I coming back to you or to my primary-care doctor? When is my next mammogram? What kind of chemo did I have? How often do I need to get blood work?' " Having all that written down and portable can help manage some of the concerns that people have, she says.
Some major cancer centers have started "survivorship" centers specifically to address such issues. Currently, about 85% of cancer patients are treated in community settings that have fewer resources. Beginning next year, however, the American College of Surgeons plan to make providing survivorship-care plans, as well as distress screening for cancer patients, a criteria for accreditation.
Doctors are also starting to pay more attention to long-term side effects of treatments. Researchers are exploring why fatigue is so common among cancer patients months or even years after treatment. "They never feel rested, and that impacts quality of life in all areas—including intimacy, sexuality, the workplace and interpersonal relations," says Susan Brown, director of health education for the Susan G. Komen for the Cure.
Some obstetrician/gynecologists say that medical oncologists, in their zeal to keep the risk of recurrence as small as possible, are ignoring quality-of-life issues.
One big battle is over estrogen. Patients whose tumors are fueled by estrogen—about two-thirds of the total—are typically put on estrogen-blocking drugs, which bring on instant menopausal symptoms, including hot flashes, night sweats, sleep disturbances and cognitive issues.
Women who are premenopausal are generally given tamoxifen, which also raises the risk of blood clots and uterine cancer. Women who are postmenopausal are given aromatase-inhibitors (AIs), which eliminate estrogen from a woman's body. About half of women on AIs complain of severe joint pain. The drugs can also hasten osteoporosis.
Although women are often loath to mention it, eliminating estrogen also creates sexual issues, particularly vaginal dryness. With time, "the hot flashes get better, but the vaginal dryness gets worse," says Mary Jane Minkin, a professor of obstetrics and gynecology at Yale University School of Medicine. A topical estrogen cream can alleviate the dryness—but some medical oncologists are concerned that even the tiny amount of estrogen that enters a woman's bloodstream from such creams could prompt a cancer recurrence.
Some oncologists now tell patients to stay on estrogen-blocking drugs for 10 years, up from five, after one study found that cut the risk of recurrence to 3.6% from 6% and increased four-year survival by 0.4%. Yet only about half of patients continue to take the drugs even for full five years, according to a study in the Journal of Clinical Oncology last year.
The tradeoffs are different depending on a patient's age, stage of cancer and prognosis. Nancy Boozer, 58, of Doraville, Ga., has held metastatic breast cancer at bay for 14 years thanks to an aromatase inhibitor, a bone-building drug and pain killers. She says she has chronic pain from both the cancer and the drugs—but she says it's worth it. "Sometimes I have my own little pity parties and I'm like, 'Woe is me,' but then I snap myself out of it. I'm glad to be here," she says.
Younger women often have tougher choices and more aggressive breast cancers. Chemotherapy and radiation can permanently damage ovaries, but with advance planning, women can have their eggs harvested for future use.
Mimi Ferraro, a singer/songwriter in Brooklyn, N.Y., who was diagnosed with breast cancer five years ago at age 29, alternated between tamoxifen and the hormone-blocking drug Lupron because the side effects were so severe. In addition to "instant menopause," she says she developed a large ovarian cyst and found it impossible to sleep.
Now, she says, her prognosis is excellent—but it's not clear whether she'll be able to get pregnant and she finds it harder to memorize songs. "I don't feel like my brain is back—I don't know if it ever will be," says Ms. Ferraro, who is writing a rock musical about young cancer patients.
Like her, many breast-cancer survivors say they find some peace of mind in reaching out to help other breast-cancer patients.
Ms. Capossela co-founded a program for young women with breast cancer at Dana Farber Cancer Institute. Ms. Boozer often meets with others at the CSC in Atlanta. Janelle Hail, who was diagnosed with breast cancer in 1980, founded the National Breast Cancer Foundation in 1991, mainly to provide free mammograms to women who couldn't afford them. Last year, the group provided 32,865 free mammograms through hospitals nationwide. "When I was first diagnosed, I felt like I'd been shot. I had a big black hole in me," says Ms. Hail. "When I started thinking about how I could help other women with breast cancer, that's when that a hole started healing up."
Risk factors include
- advancing age,
- obesity,
- physical inactivity,
- alcohol use,
- hormone replacement therapy,
- a family history of breast cancer,
- inherited susceptibility genes, particularly mutated BRCA1 or BRCA2 genes.
- typically by breast self-examination or, more effectively, by
- mammography
- removal of the tumor (lumpectomy) or the entire breast (mastectomy),
- radiation,
- chemotherapy,
- hormone therapy.
Please check VIDEO for more info
In 2001, it was estimated that 192,200 new cases of female breast cancer were diagnosed and 40,200 women would die from the disease. Approximately 46,400 cases of female in situ (preinvasive) breast cancer were projected to be diagnosed in 2001. Breast cancer is the second leading cause of cancer death for all women after lung cancer, and the leading cause of cancer deaths in women between the ages of 40 and 55. In the United States, one out of nine women will develop breast cancer in her lifetime — in 1960, the likelihood was one out of 14 women. This year, breast cancer will be newly diagnosed every three minutes, and a woman will die from breast cancer every 13 minutes.
Check this VIDEO (2) for more info.
Every woman is at risk for breast cancer. The risk of developing breast cancer increases as a woman ages, and the risk is even higher if she has a family history of breast cancer, has never had children or had her first child after age 30, and if she has had prior radiation therapy for Hodgkin's disease. However, more than 70 percent of cases occur in women who have no identifiable risk factors.
Breast cancer can be detected at an early stage in women age 40 and older. More widespread use of regular screening mammography has been a major contributor to early detection. A 1996 survey showed that more than half of U.S. women age 50 and older reported having had a mammogram within the last year. A screening mammogram is a simple, low-dose X-ray procedure that can reveal breast cancer at its earliest stage, up to two years before a lump is large enough to be felt. Annual screening mammography should begin at age 40 and continue as long as the woman is healthy and able to undergo the test.
Annual breast examinations by a medical professional are a required complement to annual screening mammography. Although some breast irregularities are found by women themselves, most women do not perform breast self-examination (BSE) regularly. Although BSE has never been proven to affect survival, a recommended component of every woman's breast health program is to become familiar with her breasts and what "normal" feels to her.
Over 80 percent of biopsied breast abnormalities are proven benign, but any breast lump must be evaluated by a physician. New, less-invasive biopsy procedures permit removal of breast tissue in a physician's or radiologist's office. If detected early, breast cancer can often be treated effectively with surgery that preserves the breast, followed by radiation therapy. This local therapy is sometimes accompanied by systemic chemotherapy and/or hormonal therapy. The five-year survival rate after treatment for early-stage breast cancer is 96 percent.
Breast cancer incidence increases with age, rising sharply after age 40. Roughly 80 percent of invasive breast cancer occurs in women over age 50.
Men can develop breast cancer too, although its incidence is low. In 2001, 1,500 male cases were projected to be diagnosed, and 400 men were projected to die from the disease.
Results of breast cancer research also suggest you should:
- Maintain a diet low in fat; one that includes fruits, vegetables and whole grains. These low-calorie, high-fiber foods have proven health benefits.
- Avoid alcohol. Regular use of even small amounts of alcohol — whether it is liquor, beer or wine — has been shown to increase breast cancer risk.
- Don't smoke. Smoking causes cancer, heart disease and many chronic illnesses; it also negatively affects the health of others.
- Exercise regularly. Work out, do aerobics, bike or walk briskly — exercise in some way so as to raise your heart rate — three or more times a week. Several studies have shown that regular vigorous exercise can reduce breast cancer risk.
- Try to avoid taking post menopausal hormone replacement therapy
Extended Use of Breast Cancer Drug Is Now Suggested
By Andrew Pollack : NY Times : December 5, 2012
The widely prescribed drug tamoxifen already plays a major role in reducing the risk of death from breast cancer. But a new study suggests that women should be taking the drug for twice as long as is now customary, a finding that could upend the standard that has been in place for about 15 years.
In the study, patients who continued taking tamoxifen for 10 years were less likely to have the cancer come back or to die from the disease than women who took the drug for only five years, the current standard of care.
“Certainly, the advice to stop in five years should not stand,” said Prof. Richard Peto, a medical statistician at Oxford University and senior author of the study, which was published in The Lancet on Wednesday and presented at the San Antonio Breast Cancer Symposium.
Breast cancer specialists not involved in the study said the results could have the biggest impact on premenopausal women, who account for a fifth to a quarter of new breast cancer cases. Postmenopausal women tend to take different drugs, but some experts said the results suggest that those drugs as well might be taken for a longer duration.
“We’ve been waiting for this result,” said Dr. Robert W. Carlson, a professor of medicine at Stanford University. “I think it is especially practice-changing in premenopausal women because the results do favor a 10-year regimen.”
Dr. Eric P. Winer, chief of women’s cancers at the Dana-Farber Cancer Institute in Boston, said that even women who completed their five years of tamoxifen months or years ago might consider starting on the drug again.
Tamoxifen blocks the effect of the hormone estrogen, which fuels tumor growth in estrogen receptor-positive cancers that account for about 65 percent of cases in premenopausal women. Some small studies in the 1990s suggested that there was no benefit to using tamoxifen longer than five years, so that has been the standard.
About 227,000 cases of breast cancer are diagnosed each year in the United States, and an estimated 30,000 of them would be in premenopausal women with ER-positive cancer and prime candidates for tamoxifen. But postmenopausal women also take tamoxifen if they cannot tolerate the alternative drugs, known as aromatase inhibitors.
The new study, known as Atlas, included nearly 7,000 women with ER-positive disease who had completed five years of tamoxifen. They came from about three dozen countries. Half were chosen at random to take the drug another five years, while the others were told to stop.
In the group assigned to take tamoxifen for 10 years, 21.4 percent had a recurrence of breast cancer in the ensuing ten years, meaning the period 5 to 14 years after their diagnoses. The recurrence rate for those who took only five years of tamoxifen was 25.1 percent.
About 12.2 percent of those in the 10-year treatment group died from breast cancer, compared with 15 percent for those in the control group.
There was virtually no difference in death and recurrence between the two groups during the five years of extra tamoxifen. The difference came in later years, suggesting that tamoxifen has a carry-over effect that lasts long after women stop taking it.
Whether these differences are big enough to cause women to take the drug for twice as long remains to be seen.
“The treatment effect is real, but it’s modest,” said Dr. Paul E. Goss, director of breast cancer research at the Massachusetts General Hospital.
Tamoxifen has side effects, including endometrial cancer, blood clots and hot flashes, which cause many women to stop taking the drug. In the Atlas trial, it appears that roughly 40 percent of the patients assigned to take tamoxifen for the additional five years stopped prematurely.
Some 3.1 percent of those taking the extra five years of tamoxifen got endometrial cancer versus 1.6 percent in the control group. However, only 0.6 percent of those in the longer treatment group died from endometrial cancer or pulmonary blood clots, compared with 0.4 percent in the control group.
“Over all, the benefits of extended tamoxifen seemed to outweigh the risks substantially,” Trevor J. Powles of the Cancer Center London, said in a commentary published by The Lancet.
Dr. Judy E. Garber, director of the Center for Cancer Genetics and Prevention at Dana-Farber, said many women have a love-hate relationship with hormone therapies.
“They don’t feel well on them but it’s their safety net,” said Dr. Garber, who added that the news would be welcomed by many patients who would like to stay on the drug. “I have patients who agonize about this, people who are coming to the end of their tamoxifen.”
Emily Behrend, who is a few months from finishing her five years on tamoxifen, said she would definitely consider another five years.
“If it can keep the cancer away, I’m all for it,” said Ms. Behrend, a 39-year-old single mother in Tomball, Tex. She is taking the antidepressant Effexor to help control the night sweats and hot flashes caused by tamoxifen.
Cost is not considered a huge barrier to taking tamoxifen longer because the drug, now generic, can be obtained for less than $200 a year.
The results, while answering one question, raise many new ones, including whether even more than 10 years of treatment would be better still.
Perhaps the most important question, however, is what the results mean for postmenopausal women. Even many women who are premenopausal at the time of diagnosis will pass through menopause by the time they finish their first five years of tamoxifen, or will have been pushed into menopause by chemotherapy.
Postmenopausal patients tend to take aromatase inhibitors like anastrozole or letrozole, which are more effective than tamoxifen at preventing breast cancer recurrence, though they do not work for premenopausal women.
Mr. Peto said he thought the results of Atlas study would “apply to endocrine therapy in general," meaning that 10 years of an aromatase inhibitor would be better than five years. Other doctors were not so sure.
Results of some studies looking at 10 years of aromatase inhibitor treatment versus five years should be available in two years, said Dr. Goss of Massachusetts General, who is a leader of one of those studies.
The Atlas study was paid for by various organizations including the United States Army, the British government and AstraZeneca, which makes the brand name version of tamoxifen.
The Latest Mammogram Controversy: Density
Many Women Aren't Told Their Breast Type May Cloud Cancer Screening;
More States Consider Notification
Melinda Beck : WSJ : August 6, 2012
Nancy Cappello had annual mammograms for a decade and each time radiologists noted in their reports that she had dense breast tissue. But doctors never told Ms. Cappello, nor did they warn her that it could make her mammograms less reliable.
When her doctor found a suspicious ridge during a manual exam eight years ago, she had a mammogram and an ultrasound on the same day. The mammogram again spotted nothing amiss, but an ultrasound found a tumor the size of a quarter. Her breast cancer had also spread to 13 lymph nodes.
Ms. Cappello, then 51, was dismayed to learn that the tumor wasn't visible on a mammogram because dense breast tissue like hers can frequently hide cancer from view. "I kept asking my gynecologist, 'Why don't you routinely tell women this?' And the answer I got was, 'That's not the standard procedure,' " she says.
In 2005, while still undergoing chemotherapy, radiation and surgeries, Ms. Cappello, an education administrator in Woodbury, Conn., started a campaign called "Are You Dense?" to educate other women about dense breast tissue.
Comparing Imaging Costs
Based on the national average Medicare reimbursement:
- Film mammogram, $81.35
- Digital mammogram, $139.89
- Breast Ultrasound, $99.39
- Breast MRI (both breasts) $716.83
Thanks in part to her efforts, last month, New York became the fourth state, after Connecticut, Texas and Virginia, to require radiologists to inform women if they have dense breasts along with their mammogram results. Similar bills are pending in 12 states and Congress. They face opposition from insurers and major medical groups concerned that the information could raise health-care costs and scare women unduly.
Studies show that having dense breasts raises the risk of developing breast cancer fourfold to sixfold. "It's a greater risk factor than having a mother or sister with the disease," but few women know this, says Deborah J. Rhodes, a preventive medicine specialist at the Mayo Clinic in Rochester, Minn. "Most of the physicians ordering these tests are also in the dark about this and the implications for women," she says.
Ultrasounds and MRIs are much more effective at spotting breast cancer. Studies show that ultrasounds find three to four additional cancers per 1,000 women with dense breasts that mammograms miss. But those tests are usually reserved for women at high risk of developing breast cancer. Using them in addition to mammograms for women with dense breast tissue could add considerably to the cost of screening.
Women's breasts are a mixture of dense tissue and fatty tissue (which is less dense), and generally become more fatty with age. Density can't be determined in a physical exam, only by imaging. An estimated 66% of premenopausal women, and 25% of postmenopausal women, have breasts that are dense enough to interfere with mammogram accuracy, according to a landmark 1996 study.
In studies of thousands of patients, Thomas Kolb, a New York radiologist who specializes in breast-cancer detection, showed that mammograms missed 60% of cancers in women with the densest breast tissue that were found on ultrasound. Other studies have showed similar results.
"I, as a radiologist, have a problem telling a woman with dense breasts that her mammogram is normal when I know it could be inaccurate 60% of the time if she has cancer," says Dr. Kolb.
Still, the American College of Radiology says there isn't enough evidence to recommend that women with dense breasts have routine ultrasound screening.
The American College of Obstetricians and Gynecologists says it is up to radiologists, not the OB-GYNs, to determine whether mammograms are sufficient. ACOG also opposed the bill in New York state because it requires radiologists to advise women with dense breasts that they may have an increased risk of breast cancer.
"Most women of child bearing age will receive this notification and they'll say, 'Oh my God, what should I do now?' " says Donna Montalto, executive director of ACOG's New York chapter. OB-GYNs will likely recommend that they have ultrasounds—but mainly because of the threat of malpractice suits if breast cancer is missed, she says. "That's defensive medicine."
Some physicians think that women with dense breasts should have regular ultrasound screenings—or at least the option to consider it. "The vast majority of women are capable of hearing this information and not freaking out," says the Mayo Clinic's Dr. Rhodes, who is studying a new technology, Molecular Breast Imaging, that uses a tracer substance that makes cancer cells highly visible, and which she says shows promise in detecting cancers in dense breast tissue.
Jean Weigert, an executive with the Radiological Society of Connecticut, lobbied against the notification bill there on the grounds that it would increase costs and anxiety without much benefit. But once it passed, in 2009, she was impressed with its impact. Pooling data on 78,000 women in six different practices, Dr. Weigert found that about half of the women, or 8,651 patients, with dense breast tissue went on to have ultrasounds which found 28 cancers that weren't visible on mammograms. "We are definitely finding more cancers, most of them at very early stages," says Dr. Weigert
Connecticut, the first state to pass a notification bill, also requires insurers to pay for ultrasounds for women with dense breasts. According to Dr. Weigert's analysis, the additional screening for those 8,652 women cost $2.15 million, or $110,000 for each additional cancer found. Finding cancers early saves many times that amount compared with the cost of late-stage cancer treatment, she notes.
The dense-breast debate comes at a time when the value of breast-cancer screening in general is being questioned. The U.S. Preventive Services Task Force in 2009 recommended against annual mammograms for women in their 40s and said that women 50 and older should have them only every other year. (ACOG and many breast-cancer groups still recommend them annually starting at age 40.)
Last week, in an editorial in the British Medical Journal, two Dartmouth researchers accused the advocacy group Susan G. Komen for the Cure of overstating the value of early detection in its ads while not telling women that screening can result in many false alarms and treatments for cancers that might not have been life-threatening. "Everyone agrees that mammography isn't perfect, but it's the best widely available detection tool that we have today," Chandini Portteus, Komen's vice president of research, evaluation and scientific programs, said in a statement. Other experts say that breast-cancer deaths have dropped 30% in the U.S. since 1990, due at least in part to early detection from widespread screening.
Even without legislation, some experts note that women can ask about their breast density, since radiologists routinely report that information to physicians. "If women are at all concerned, after a mammogram, they can call their doctors and say, 'Listen, do I have dense breasts? Do I need anything further?' " says Carol Lee, chair of the American College of Radiology's Breast Imaging Commission.
Dense breast tissue an overlooked risk factor for cancer
By Jeff Donn : Associated Press : Boston Globe : January 18, 2007
Cancer turns up five times more often in women with extremely dense breasts than in those with mostly fatty tissue, a study shows, signaling the importance of a risk factor rarely discussed with patients. On mammograms, fat looks dark, but dense tissue is light, like tumors, so it can hide the cancers. But this study confirms that cancers are also more frequent -- not just hidden -- in women with dense breasts. That means that density is a true risk factor, along with other strong predictors such as age and the genes BRCA1 and 2. Yet specialists say that breast density is rarely considered with other risk factors in discussions between doctors and patients.
"It's been ignored to an absolutely unbelievable degree," said study leader Dr. Norman Boyd at Princess Margaret Hospital in Toronto.
The Canadian study by cancer centers in Toronto and Vancouver focuses on how and when cancers were found over eight years in existing records of 1,112 women collected between 1981 and last year. It is being reported in today's New England Journal of Medicine.
Breast density comes from the presence of more connective, duct-lining and milk-gland tissue than fat. But a woman can't judge her own density; it is routinely evaluated from a mammogram. Previous studies had linked breast density to a higher rate of cancer, pointing to both masking and a separate biological risk. In this study, women with at least 75 percent dense breasts showed five times more likelihood of cancer than women with less than 10 percent density.
The researchers went further by calculating just how many more cancers were found at screening, within the next year, and in the years afterward. Cancers found within a year were considered likely to be present, but masked, during the earlier mammogram. But a true biological risk was seen in cancers discovered by mammogram or long afterward. In this study, cancers were 18 times more likely in women with the densest breasts within the first year after mammograms -- the masking effect.
However, cancers in women with the densest breasts were also more than three times more likely to turn up at the time of screening and after the first year following a mammogram. That confirms and helps quantify the true biological link between density and cancer.
"I think the masking thing is important, and it does happen, but the most important thing is that this is an incredible risk factor," said Dr. Karla Kerlikowske, of the Veterans Affairs Medical Center in San Francisco, who wrote an accompanying editorial. "This probably counts for a large percentage of the cancer that's occurring."
For women, breast cancers are the second most lethal kind after lung cancers. About 1 in 8 women will get invasive breast cancer during her lifetime, according to the American Cancer Society. Last year, about 41,000 US women died of it. Worldwide, it kills about 370,000 women each year. In this study, density of more than 50 percent accounted for 16 percent of all cancers and a quarter in women under age 56.
Robert Smith, a screening specialist at the American Cancer Society, said this study and its predecessors will encourage a rethinking of cancer screening. For now, women can ask their doctor about their breast density based on a mammogram and how it might affect their risk. However, specialists say it's too soon for doctors to provide solid advice to individual patients.
For one thing, quicker, more accurate tools are needed to measure density. Some specialists believe that ultrasound, magnetic resonance imaging, or computerized mammograms may ultimately prove better at finding tumors in very dense breasts, but it's still unclear how much value each might yield for its cost. Some believe lifestyle changes or even preventive drugs may one day be recommended to women with this risk factor.
Reducing Your Risk for Breast Cancer
By Roni Caryn Rabin : NY Times Article : May 13, 2008
Go for regular checkups, do breast self-exams and get your mammograms on time, and chances are you’ll detect breast cancer early on, when it is most treatable. But what about prevention? Short of radical surgery, are there steps you can take to reduce the risk?
Turns out there are.
True, immutable factors like genetics, a family’s medical baggage and just being born female determine much of the risk of breast cancer. And, as with all cancers, that risk increases with age: a 30-year-old woman’s chances of developing breast cancer over a 10-year period are less than half of 1 percent, or 1 in 234, while a 60-year-old has a 3.5 percent risk, or 1 in 28. (The often-heard “one in eight” figure refers to the lifetime risk that women face.)
But there is now solid evidence that lifestyle can play a role as well. Choices that have an effect include how much alcohol a woman drinks (none is best), the amount of physical activity she gets (the more the better) and whether she takes hormones (the less the better). Doctors also urge women to keep their weight down, as obesity increases the risk of developing breast cancer during the postmenopausal years.
“Breast cancer is a disease of how much estrogen you have in your body,” said Heather Spencer Feigelson, strategic director of genetic epidemiology for the American Cancer Society, and these seemingly disparate factors — alcohol, physical activity and hormone pills — affect levels of estrogen and other hormones.
“There are things you can’t change, like when you got your first period, or your family history,” said Dr. Carolyn D. Runowicz, director of the Carole and Ray Neag Comprehensive Cancer Center at the University of Connecticut Health Center in Farmington, Conn., referring to two well-known risk factors, early menstruation and having a close relative with breast cancer. “But you can change a lot about you. Empower yourself with knowledge and information.”
Know your family’s medical history — but even if there is no history of breast cancer, don’t be complacent. Consult a genetic counselor if you are concerned about your family history, and inquire about being tested for the genetic mutations that increase breast cancer risk (more common among Ashkenazi Jews). Do not forget that breast cancer genes come from both sides of the family, not just your mother’s.
Among relatives, “the special red flags” are premenopausal breast cancer, bilateral breast cancer (cancer that appears in both breasts) and ovarian cancer, said Dr. Larry Norton, deputy physician in chief of breast cancer programs at Memorial Sloan-Kettering Cancer Center. But even if no one in the family had breast cancer, that is no guarantee that you are safe, said Dr. Runowicz; in fact, only 10 percent of breast cancer patients have a family history.
Cut down on alcohol, or avoid it altogether. When it comes to breast cancer, studies have been pretty consistent: there is no safe amount of alcohol. Even one glass of wine a day can increase your risk slightly, and the risk climbs with each additional drink. “This is something you can control,” said Jasmine Q. Lew, a student at the Pritzker School of Medicine at the University of Chicago who recently completed a National Institutes of Health study that is one of the largest on the subject. “Women can choose not to drink.”
Exercise, exercise, exercise. Obesity after menopause increases the risk of breast cancer, so try to keep your weight down. But exercise is beneficial regardless of weight, and even a small amount of physical activity may be helpful. “Women who are overweight and exercising are at lower risk than those who are overweight and not exercising; women who are lean and exercising are at lower risk than women who are lean but not exercising,” Dr. Feigelson said. Risk drops with increased hours and strenuousness of exercise, and studies have found that women who do an average of three hours of strenuous exercise a week reduce their risk of breast cancer by 20 percent.
Breast-feed if you can. Early menstruation, late menopause, postponing pregnancy and never having gone through a full-term pregnancy increase the risk of breast cancer, but those factors cannot be changed easily. If you do have a baby, however, you may want to breast-feed, and the longer the better; studies have found that breast-feeding reduces the risk of breast cancer.
Try not to take combined hormone therapy. The recommendation for all hormone therapy is to take the lowest dose for the shortest period necessary. A Women’s Health Initiative study found a slightly higher risk for breast cancer among women who took estrogen with progestin after menopause, and a drop in breast cancer diagnoses since then has been attributed to the fact that many women quit using hormones. (In the same study, women on estrogen-only therapy, which is used by those who have had hysterectomies, did not have a higher breast-cancer risk.) A woman who has recently used birth control pills is also at greater risk; Dr. Norton urges women to find alternative contraceptive methods and avoid so-called natural or herbal hormones as well.
Have regular mammograms, but if you have very dense breast tissue or are at high risk of breast cancer for other reasons, insist on an M.R.I. as well. Having high breast-tissue density can drastically raise your risk of developing breast cancer, as does finding atypical hyperplasia, or abnormal cell growth, which is confirmed by a biopsy. After a mammogram, discuss the results with your physician. “Everyone just wants to hear that it’s negative,” Dr. Runowicz said. But important information can be gleaned even from a negative screening, she said. “Learn about your breast density. If a biopsy shows hyperplasia, your doctor can put you on a chemoprevention program.”
Become familiar with your personal risk factors. Your breast cancer risk could be higher than normal if you are above average height, upper middle class (probably related to the tendency to postpone childbearing and having fewer children), never had a full-term pregnancy or you had children after age 30, or if you ever had endometrial, ovarian or colon cancer or ever had high-dose radiation to the chest, your risk for breast cancer could be higher than average.
Much Wider Use of M.R.I.’s Urged for Breast Exam
By Denise Grady : NY Times article : March 28 2007
Two reports being published today call for greatly expanded use of M.R.I. scans in women who have breast cancer or are at high risk for it.
The recommendations do not apply to most healthy women, who have only an average risk of developing the disease.
Even so, the new advice could add a million or more women a year to those who need breast magnetic resonance imaging — a demand that radiologists are not yet equipped to meet, researchers say. The scans require special equipment, software and trained radiologists to read the results, and may not be available outside big cities.
Breast M.R.I. costs $1,000 to $2,000, and sometimes more — 10 times the cost of a mammogram — so a million more scans a year would cost at least $1 billion. It is sometimes covered by insurance and Medicare, sometimes not.
One report is a set of new guidelines for using M.R.I. in women at high risk for breast cancer, and the other is a study in The New England Journal of Medicine showing that in women who have newly diagnosed cancer in one breast, M.R.I. can find tumors in the other breast that mammograms miss.
M.R.I. has drawbacks. It is so sensitive — much more so than mammography — that it reveals all sorts of suspicious growths in the breast, leading to many repeat scans and biopsies for things that turn out to be benign. For women who are likely to have hidden tumors, the prospect of such false-positive findings may be acceptable. But the risk of needless biopsies and additional scans is not considered reasonable for women with just an average risk of breast cancer, and is the main reason M.R.I. is not recommended for them.
The new guidelines, from the American Cancer Society, are being published in the society’s journal CA: A Cancer Journal for Clinicians. They recommend scans and mammograms once a year starting at age 30 for high-risk women.
High risk is defined as a 20 percent to 25 percent or higher chance of developing breast cancer over the course of a lifetime. (The average lifetime risk for women in the United States is 12 percent to 13 percent.)
The high-risk group includes women who are prone to breast cancer because they have certain genetic mutations, BRCA1 or BRCA2, or those whose mothers, sisters or daughters carry those mutations, even if the woman herself has not been tested. These mutations are not common — they cause less than 10 percent of all breast cancers — but they greatly increase a woman’s risk, to 36 percent to 85 percent.
Women with even rarer mutations, in genes called TP53 or PTEN, are also advised to be screened, as are women who had radiation treatment to the chest between ages 10 and 30, for disorders like Hodgkins disease.
Others at high risk include women from families in which breast cancer is common, especially in their close relatives, even if no genetic mutation has been identified. Women and their doctors can estimate their odds by using one of several online risk calculators that factor in the medical history of both the woman and her family. A simple calculator is available at http://www.cancer.gov/bcrisktool/.
But different calculators can give quite different results, and women may need help from their doctors to interpret the results, said Dr. Elizabeth Morris, a member of the expert panel that drew up the guidelines and director of Breast M.R.I. at Memorial Sloan-Kettering Hospital in Manhattan.
“Just to figure out who should have it will be the hardest thing,” Dr. Morris said. “A lot of that onus is put on the referring physician. A lot of women are going to think they’re high risk, and they’re not.”
The cancer society said that for women with certain conditions, there was not enough information to recommend for or against M.R.I. screening. The uncertain group includes women with very dense breast tissue on mammograms, and women who had breast cancer in the past, or growths called carcinoma in situ or atypical hyperplasia.
Dr. Robert Smith, the cancer society’s director for screening, estimated that the new guidelines would add one million to two million women a year to the number who should have breast M.R.I.
Increased demand for such scans could easily outstrip the capacity, even though the number of centers offering them has increased markedly in the last five years, said Dr. Constance Lehman, another member of the panel that wrote the guidelines and a professor of radiology at the University of Washington. She said professional societies in radiology were scrambling to provide training and accreditation for the scans.
Insurers will probably cover the scans because the new guidelines are based on good evidence and promoted by a respected medical group, said Peter V. Lee, president of the Pacific Business Group on Health, a nonprofit coalition of large buyers of health care that cover about five million people. Huge amounts of money are now wasted on unnecessary M.R.I., Mr. Lee said, adding: “Here we have a case where there’s evidence. Hallelujah! Let’s use it.”
Not every imaging center is qualified to perform such scans, but some that are not up to par may offer it anyway, so patients must beware.
Special equipment is needed: a powerful, “high-field” magnet and a special breast coil to generate a magnetic field around the breast. The scan is done with the woman lying on her stomach on a special table with openings that let the breasts rest in wells surrounded by the coil.
“And you have to make sure they’re doing enough, not one a week, and make sure they have biopsy capability,” Dr. Morris said.
If the breast scan is done at a center that cannot perform biopsies, a woman with a suspicious finding may have to start all over again at another clinic.
The second new report describes a study showing that in women who had cancer in one breast, an M.R.I. scan of the other breast found tumors that mammograms had missed in 3 percent of the women. Researchers say M.R.I. can help women who already have one cancer by detecting a hidden tumor in the other breast, enabling them to have both cancers treated at once instead of having to go through treatment all over again when the second tumor is finally detected.
Research has shown that 10 percent of women who have cancer in one breast will eventually develop it in the other as well.
“This study supports the recommendation that women who are diagnosed with breast cancer consider the benefits of a breast M.R.,” said Dr. Lehman, the senior author of the study. “What we think is most important is that we understand the full extent of a woman’s breast cancer before her therapy is initiated.”
The scans are recommended in newly diagnosed cases, but not for most women who had breast cancer treated in the past.
Currently, women with newly diagnosed cancer in one breast are given mammograms of the other, but only a minority are offered M.R.I., Dr. Lehman said. This year, about 180,000 new cases of breast cancer are expected in the United States.
Some surgeons think every woman with a new diagnosis of breast cancer should have an M.R.I. of the other breast, and some think no one should, Dr. Morris said. She said the scans were most likely to be useful in younger women with breast cancer and dense tissue that hides tumors from mammograms. In older women with small, early tumors and clear mammograms, she said, such scanning is less important.
The study findings will make it harder for insurance companies to refuse to pay for such scans of the second breast in women with breast cancer, said Dr. Etta D. Pisano, another author of the study and a professor of radiology at the University of North Carolina.
The study, conducted at 25 medical centers, included 969 women with recently diagnosed cancer in one breast and a normal mammogram on the other. All were given M.R.I. scans, which discovered cancers in the supposedly healthy breast in 30 women, 3.1 percent of the group. Nearly all the cancers were at an early stage, and were treated at the same time as the ones originally discovered.
Without the scans, Dr. Lehman said, the tumors would not have been found until later, and then the women would have had to go through surgery, and perhaps radiation and chemotherapy as well, all over again. “We know cancers diagnosed later in these women don’t do as well as cancers diagnosed initially,” she said.
But to find 30 cancers, 121 women had biopsies, which were ordered because of abnormalities on M.R.I. That means 91 false-positive scans and biopsies of healthy tissue, and a false-positive rate of about 10 percent. Dr. Lehman said most cancer patients were willing to accept the risk of a false-positive and a biopsy in order to find out whether there was anything to worry about in the other breast.
The study was paid for by the National Cancer Institute.
In New Cancer Guideline, a Host of Uncertainties
By Michael Mason : NY Times Article : April 3, 2007
By using radio waves and magnetic fields to produce richly detailed images of soft tissue, magnetic resonance imaging can uncover breast abnormalities that cannot be seen with an ordinary mammogram.
So after reviewing data published in the last few years on the effectiveness of this technology as a screening tool, the American Cancer Society last week issued new guidelines recommending an annual M.R.I. scan starting at age 30 for women at high risk for breast cancer.
“We have got to change the way we look at these patients and to start treating them differently,” said Dr. D. David Dershaw, director of breast imaging at Memorial Sloan-Kettering Center.
But for many women, the new standards raise difficult questions. For one thing, they apply mainly to the estimated 1.4 million women at high risk of developing breast cancer.
Many women have no idea which risk category they belong to, researchers note. Several studies have found that women tend to overestimate their chances of breast cancer, and the risk models used by clinicians can produce widely varying results.
And it is far from certain that there are enough qualified facilities to handle an influx of high-risk women who may now seek regular M.R.I. screenings.
“From an individual woman’s point of view, I think these guidelines are useless,” said Barbara Brenner, executive director of Breast Cancer Action, an advocacy group in San Francisco. “We don’t have a medical system that can do this. It’s just not the real world.”
Because M.R.I.’s are more sensitive than mammograms or ultrasound, they are more likely to reveal suspicious anomalies that turn out to be benign. Every false positive generates expense, anxiety and treatment that may not be necessary.
“M.R.I. scans send up a lot of red flags,” said Dr. Carl D’Orsi, co-chairman of the American College of Radiology’s breast imaging commission. “Unless there’s a dramatic change in technology or in the cost of the exam, it won’t be appropriate for screening the general public.”
Along with the troublesome false positives, the scans do pinpoint cancer missed by other methods. After Adrienne Evans of Terlingua, Tex., learned from a biopsy that a lump in her left breast was cancer, she had a mammogram and an ultrasound scan. They revealed no other tumors, so Ms. Evans and her doctor agreed that the best treatment would be a simple procedure to remove the lump.
Still, because her breast tissue was unusually dense, the doctor ordered an M.R.I. It revealed a second tumor buried deep in the same breast, a menace that had been invisible on the previous scans.
She opted for an immediate mastectomy, followed by reconstructive breast surgery.
“I think that M.R.I. saved my life,” said Ms. Evans, who is 50. “Without it, my cancer would have gone undetected, and it would have advanced.”
By recommending M.R.I. screenings only for highest-risk women, the scientists writing the new guidelines hope to raise the odds that what is discovered is actually cancer.
Women at high risk include those with mutations of the cancer susceptibility genes BRCA1 and BRCA2, first-degree relatives who have not yet been tested, and those who have undergone radiation therapy to the chest for treatment of conditions like Hodgkin's disease.
By most estimates, women with strong family histories of breast and ovarian cancer also are at high risk, even if they are not known to have a particular gene mutation.
For example, a 35-year-old woman whose father’s sister contracted breast cancer at 29 and whose grandmother contracted it at 35 has an estimated lifetime risk of 31 percent, according to one risk model. She would qualify for regular M.R.I. screenings under the new guidelines.
Not all women at increased risk are being advised to get M.R.I. scans. The new guidelines take an equivocal approach to the evaluation of women at only moderate risk of developing breast cancer — including, surprisingly, those who have survived it. The risk of a second diagnosis is just 10 percent over their lifetimes, not enough to justify regular magnetic resonance screenings.
And though women found to have such precancerous conditions as lobular carcinoma in situ or atypical ductal hyperplasia are also more likely to develop breast cancer, the increased risk is not sufficient to recommend regular M.R.I. screenings, according to the cancer society.
Women who have been told repeatedly that early detection is crucial to surviving breast cancer may find this advice confounding. But it stems partly from the limitations of the current health-care system.
“M.R.I. generates a high number of biopsies for every cancer that you find,” Dr. Dershaw said. “If we did screening with M.R.I. for everyone, we would raise the price of screening 10 times over.” Since that cost may not be reimbursed by insurers or government programs, indiscriminate use of M.R.I. could create a disincentive for screening, compared with less expensive mammography.
In addition, the quality of scans can vary significantly from clinic to clinic, according to some researchers.
The best facilities have dedicated breast coils, which are required for the most accurate screening, and they are able to perform the guided biopsies necessary for diagnosis.
Experienced facilities are uncommon outside metropolitan areas, noted Dr. D’Orsi of the radiology society, so putting the new screening guidelines into effect for high-risk women is likely to prove challenging. Simply reading an M.R.I. scan of the breast is a relatively new skill, as much an art as a science.
“The real issue is what kind of M.R.I. patients will get and how it will be interpreted,” Dr. D’Orsi added. “Now it’s like a perfect storm coming together.”
Benefits of Mammograms
Editorial NY Times, November 6, 2005
Long-simmering doubts about the benefits of mammograms to screen women for breast cancer should be dispelled by a new study conducted by seven major research groups. Mammograms have long been recommended as an effective tool for detecting tiny breast tumors so that they can be treated before they become dangerous. But four years ago, an analysis published in a British medical journal found so many flaws in studies that purported to show a benefit from mammography that the results were deemed virtually meaningless. Other experts agreed that the evidence was shaky, but mainstream cancer and medical organizations remained convinced that mammograms save lives.
Now comes a study, published in The New England Journal of Medicine, that was conducted by research teams including both skeptics about mammograms and true believers. The study sought to estimate the relative importance of screening mammograms and powerful new drugs in producing a 24 percent decline in breast cancer mortality in the United States from 1990 to 2000. Seven research teams each developed statistical models of breast-cancer incidence and mortality and plugged in additional information to tease out the answer.
The results varied widely. One team found screening responsible for 65 percent of the decline and drug therapies a mere 35 percent. Another team gave drugs fully 72 percent of the credit. The other estimates fell in between.
What seems most important is that each team found at least some benefit from mammograms. The likelihood that they are beneficial seems a lot more solid today than it did four years ago, although the size of the benefit remains in dispute.
Women still need to make their own judgments as to whether the usefulness of screening outweighs the risks, which include false positives and possibly needless treatment to remove tiny tumors that might never have caused a problem if left alone. The good news is that women can now be pretty confident that there really are benefits from mammography.
Screening: Breast Cancer History Is a Two-Sided Family Tree
By Eric Nagovery : NY Times article
Doctors who screen women to determine their risk for breast cancer should question them more closely about the history of the disease on their father’s side of the family, researchers say.
A new study finds that women often report fewer paternal cases of breast cancer than maternal ones, even though the numbers should be about the same. As a result, their breast cancer risk may be underestimated.
The researchers, writing in The American Journal of Preventive Medicine, said the findings had implications for both researchers designing studies and doctors treating patients.
“Primary care physicians might pay particular attention to getting information about the father’s side of the family,” they wrote, “since patients may not know that paternal family history is also relevant for their health.”
The researchers, led by John M. Quillin of Virginia Commonwealth University, looked at the results of an earlier study in which more than 800 women who did not have breast cancer were asked about their family history of the disease.
About a quarter reported cancer on their mother’s side or their father’s side. But 16 percent reported maternal cases, while only 10 percent reported paternal ones.
There could be several reasons for the difference, the researchers said. It may be that men are less likely to be told about a breast cancer history in their family — or to pass the information on.
But the study also noted that many women did not know their fathers or have close relationships with them, and the researchers cited government reports that about 14 percent of children did not live with their fathers
The Struggle to Move Beyond ‘Why Me?’
By Alice Lesch Kelly : NY Times Article : May 8, 2007
Six days after my husband and I returned from a trip to Aruba — our first real vacation without our children — my doctor told me I had breast cancer. I had felt a lump in my breast before the trip, but decided to wait to have it checked. I’d had lumps before, and they had always turned out to be nothing. But this one wasn’t nothing. It was Stage 2 invasive ductal carcinoma.
The days after my diagnosis are a blur of doctor visits, tests, sleepless nights, tearful discussions with family members and intense research. I saw doctor after doctor after doctor. They patiently answered my many questions about surgery, chemotherapy, radiation and endocrine therapy. But none of them could answer the most important question of all: Why the hell did I get breast cancer?
I was 41. I had no family history of breast cancer and no major risk factors. Tests showed I did not carry breast cancer genes. I exercised regularly and ate healthfully. I did not smoke. I had yearly mammograms. The only thing I’d done “wrong,” according to the standard list of risk factors for breast cancer, was having my first baby after age 30.
And yet all I got from my doctors when I asked them why was a shrug. “It just happens,” a surgeon told me. “You can do everything right and still get breast cancer. Unfortunately, you drew the short straw.”
That explanation didn’t cut it for me. I needed to know why.
As a freelance health writer, I’m accustomed to tracking down the answers to vexing medical questions. So I set out in search of an answer. I examined studies, pored over articles in medical journals, spoke with experts and joined a support group with women who knew so much about breast cancer they could have passed board certification exams.
Meanwhile, I underwent my treatment — three operations, eight sessions of dose-dense chemotherapy and six weeks of daily radiation treatments. I lost part of my breast, all of my hair and most of my sense of security. And still no answer to my question.
Not long after my treatment ended, I found myself in a hospital elevator with a bald woman. I had no hair at that time, either, so we started to chat. (It’s amazing how cancer brings people together — I’ve had deep, 45-minute conversations with complete strangers in waiting rooms.)
“What have you got?” she asked me. We were like prisoners in the same jail comparing crimes. o satisfactory
“Stage 2 breast cancer,” I told her.
“I’m Stage 4 ovarian,” she said.
I could tell by the look on her face that I wasn’t doing a very good job of concealing the look on my face. We both knew that her prognosis was not good. But she wasn’t grieving. She seemed happy.
“When I was diagnosed, the doctors told me I had two months to live,” she said with a huge grin. “That was more than three years ago.”
We stood in the damp parking garage, talking. She is a single mother with two teenage children. She gets chemo every couple of weeks and works full time because she needs the money, and the health insurance. As we chatted, I realized that if she weren’t bald, I would never know she was battling a terminal illness.
“How do you do it?” I asked her. “How do you live each day with cancer hanging over your head?”
She smiled, understanding. “I treat every day as an adventure, and I refuse to let anything make me sad, angry or worried,” she replied. “I live for the day, which is something I never did before. Believe it or not, I’m happier now than I was before I was diagnosed.”
She wasn’t spending her time tracking down studies and agonizing over statistics. She wasn’t sitting with her head in her hands, asking why, why, why. No, she didn’t know why she got cancer, but she realized that nothing would be different even if she did.
I thought about her for days. Gradually I began to understand. The only answer to the question “Why me?” is this: Because bad stuff happens to everyone, and this is what happened to me. One of my closest friends struggled with infertility. That’s her short straw. Another friend’s marriage fell apart. Another friend gave birth to a stillborn child. Look closely enough and you’ll see that everyone has a short straw or two in their lives.
I’ll never know why I got cancer. What I do know is that the sooner I let go of the need to find something or someone to blame, the sooner I’ll be able to put cancer behind me and enjoy life, however long or short it may be. Only when I accept the sometimes cruel randomness of fate will I be able to call myself a survivor.
Alice Lesch Kelly is a freelance health writer based in Newton, Mass.
Herceptin : Cancer Drug May Elude Many Women Who Need It
By Andrew Pollack : NY Times Article : June 12, 2007
The breast cancer drug Herceptin is considered the model for the future of medicine tailored to each individual. The drug is given only to the 20 percent of breast cancer patients whose tumors have a particular genetic characteristic.
But now, nearly a decade after the drug’s approval, evidence is emerging that the testing of the tumors can be highly inaccurate or that the wrong cutoff values are being used to determine who qualifies for treatment.
That could mean that as many as 40 percent of women with early breast cancer might benefit from the drug but are not getting it, some experts say. Yet other women may be paying for the drug and risking its side effects unnecessarily.
“This has major practice-changing potential,” Dr. James H. Doroshow of the National Cancer Institute said in a commentary after one presentation at the American Society of Clinical Oncology meeting here last week. But he added that the data were too preliminary to justify changing treatment patterns just yet.
Herceptin, also known as trastuzumab, works by blocking Her2, a protein that can spur growth of tumor cells. It is given only to women whose tumors have abundant amounts of the protein. There are two tests used to determine this. One looks at the amount of the protein on the surface of a sample of tumor cells. The other looks for extra copies of the gene that governs the production of Her2.
But two studies discussed at the oncology meeting found that patients who were considered Her2-negative even using both tests benefited from Herceptin.
Both studies reanalyzed tumor samples from earlier clinical trials showing that Herceptin, if used after a tumor is removed by surgery, cuts the risk of the cancer’s recurring by half. For a woman to have entered those trials, her tumor had to be classified as Her2-positive by a local clinical laboratory.
But scientists have now gone back and retested those preserved tumor samples and found that as many as 20 percent of them were actually Her2-negative. Yet the women with those tumors also experienced a reduction in cancer recurrence from Herceptin, in some cases as great as that in the Her2-positive women.
“This is a revolution compared to what we believed before,” said Dr. Edith A. Perez of the Mayo Clinic, who presented one of the studies. She said the findings raised questions of whether women who were Her2-negative should be tested again.
Some experts were skeptical, saying the number of patients in the two studies was too small to draw firm conclusions. Also, they said, it was not clear if those women were truly Her2-negative, since they had tested positive by the local laboratory.
Dr. Daniel F. Hayes, a breast cancer specialist at the University of Michigan who helped develop guidelines for Her2 testing, said it would be unwise to start giving Herceptin to Her2-negative women because the drug was expensive and raised the risk of heart failure.
But he said the studies called attention to the inconsistent quality of Her2 testing in many small laboratories. Laboratories can use commercially available tests or develop their own.
Dr. Soonmyung Paik, who presented the second study at the cancer conference, said the problem might lie not in sloppy testing but rather in the cutoff used to determine which women get Herceptin.
Dr. Paik, who is with the National Surgical Adjuvant Breast and Bowel Project, said that about 40 percent of women had intermediate levels of Her2. They are now classified as negative but might still derive some benefit from the drug. On the other hand, he said, many women who are Her2-positive do not benefit from Herceptin. So better ways are needed to determine who should be treated.
“To me, the take-home message is that we don’t have a perfect test, unfortunately,” Dr. Paik said.
Dr. Pamela M. Klein, an executive at Genentech, the manufacturer of Herceptin, said the company was continuing to explore how to best identify patients for the drug.
The fact that this uncertainty is occurring so long after the 1998 approval of Herceptin — the paragon of “personalized medicine” — suggests that it will not be so easy to tailor other drugs to patients based on gene or protein tests.
It left some doctors at the conference incredulous and uncertain how to treat their patients.
“Here we are, 10 years into it,” said Dr. Marc L. Citron, an oncologist in Lake Success, N.Y., “and we don’t know how to test for it.”
Thriving After Life’s Bum Rap
By Jane E. Brody : NY Times Article : August 14, 2007
Can getting cancer make you happy? For Betty Rollin, survivor of two breast cancers, there’s no question about it. In her newest book, “Here’s the Bright Side,” Ms. Rollin recounts:
“I woke up one morning and realized I was happy. This struck me as weird. Not that I didn’t have all kinds of things to be happy about — love, work, good health, enough money, the usual happy-making stuff. The weird part is, I realized that the source of my happiness was, of all things, cancer — that cancer had everything to do with how good the good parts of my life were.”
Her realization is hardly unique. I have met and read about countless people who, having faced life-threatening illness, end up happier, better able to appreciate the good things and people in their lives, more willing to take the time to smell the roses.
As Ms. Rollin put it: “It turns out there is often — it seems very often — an astonishingly bright side within darkness. People more than survive bum raps: they often thrive on them; they wind up stronger, livelier, happier; they wake up to new insights and new people and do better with the people around them who are not new. In short, they often wind up ahead.”
This is not to suggest that battling cancer is pleasurable. Frustration, anger and grief are natural reactions. Cancer forces people to put their lives on hold. It can cause considerable physical and emotional pain and lasting disfigurement. It may even end in death.
But for many people who make it through, and even for some who do not, the experience gives them a new perspective on life and the people in it. It is as if their antennas become more finely tuned by having faced a mortal threat.
As a woman with incurable ovarian cancer recounted this spring in The New York Times: “I treat every day as an adventure, and I refuse to let anything make me sad, angry or worried. I live for the day, which is something I never did before. Believe it or not, I’m happier now than I was before I was diagnosed.”
Sometimes such changes happen to those who live through the cancer experiences of others. My mother died at age 49 of ovarian cancer, and I went off to college thinking that every moment was precious, to be used productively both for personal betterment and for what I could offer to the world. At 18 I wrote a speech on preparing one’s own epitaph — about being able to say that however long your life, you lived it fully and made it count for something meaningful.
Now, 48 years later, as people I know succumb to intractable illness or sudden death, I am even more attuned to the need to savor every moment and do whatever I can to make the world a better place and nurture relationships with friends and family.
Michael Feuerstein, a clinical psychologist and author with Patricia Findley of “The Cancer Survivor’s Guide,” was 52 when he was told he had an inoperable brain tumor and was given a year to live. But Dr. Feuerstein didn’t die — he survived extensive debilitating treatment and gained a new outlook.
He wrote: “I now realize that I am fortunate. Now, after the cancer, I find I can more easily put life in perspective. I re-evaluated my workload, opting to spend more time at home. I take more time for what matters to me most: my wife and my children and grandchild. I also allocate time to better understand cancer survivorship from a scientific point of view, so I can help others in my situation translate this work into useful answers to the question, ‘now what?’ I am optimistic about the future and excited to leave my unique mark on the world.”
‘A Second Life’
When it comes to leaving a mark on the world, Lance Armstrong takes first prize. After surviving treatment for testicular cancer that had spread to his lungs and brain, Mr. Armstrong went on to win the Tour de France a record seven consecutive times.
“There are two Lance Armstrongs, precancer and post,” he recounted in his 2001 memoir, “It’s Not About the Bike: My Journey Back To Life.” “In a way, the old me did die, and I was given a second life.” He created a foundation to inspire and empower people affected by cancer, helping them live life on their own terms.
“Cancer was the best thing that ever happened to me,” he said. “I don’t know why I got the illness, but it did wonders for me, and I wouldn’t want to walk away from it.”
Likewise, Fran Lenzo wrote in the magazine Coping: “Breast cancer has given me a new life. Breast cancer was something I needed to experience to open my eyes to the joy of living. I now see more of the world than I was choosing to see before I had cancer. The things that once seemed so important, like keeping a clean home, are less important. My priorities now are to enjoy everything around me to the utmost. Breast cancer leaves me no time for personality conflicts, arguments, debates or controversy. Breast cancer has taught me to love in the purest sense.”
Finding Happiness
There’s no question that cancer, whether curable or ultimately fatal, changes lives. It forces some people to give up careers and may jeopardize their ability to earn a living. It leaves some people disabled and unable to pursue athletic or other ambitions requiring physical prowess. It leaves some people unable to bear or father children. Yet, time after time, even people who have lost so much find new and often better sources of fulfillment.
Recurring cancer and the extensive treatment it required forced Dr. Wendy Schlessel Harpham of Dallas to give up her beloved medical practice. So she turned her sights to writing, producing book after book that can help people with cancer achieve the best that medicine and life can offer them.
Dr. Harpham is a 16-year survivor of recurrent chronic lymphoma. In her latest book, “Happiness in a Storm: Facing Illness and Embracing Life as a Healthy Survivor,” she states: “Without a doubt, illness is bad, yet survivorship — from the time of diagnosis and for the balance of life — can include times of great joy among the hardships. You can find happiness. Chances are the opportunities for happiness are right in front of you.”
She suggests creating a “personal happiness list” to help you remember favorite pastimes and reintroduce former delights into your life. Or perhaps you might want to explore activities that in your precancer life, you thought you had no time for, like studying a foreign language, traveling for pleasure or spending more time with friends.
“You might need to explore different ways of seeing yourself and the world around you,” Dr. Harpham writes. “In doing so, you discover new types of happiness waiting to be tapped, such as the happiness of sharing invigorating ideas and nascent hopes with new friends, or the happiness of knowing love in a whole new way.
“Happiness in a storm,” she concludes, “is never about enjoying your illness but embracing your life within the limits of your illness, and figuring out how to feel happy whenever possible.”
How to deal with questions about your condition.
"I am undergoing treatment for breast cancer. My problem is that, while I've been open about the situation, I don't always wish to discuss it or my frame of mind. Kind souls approach constantly and ask how I'm doing. Sometimes I'm open to chatter; other times I'm on that fine line between a frozen face and a teary meltdown. Is there a polite way to say, "Please bear with me; I can't discuss it at the moment" without being rude? It gets tricky, particularly at the office."
ANONYMOUS in Wakefield
"Anonymous, I have so little to add to your brave and honest letter! The answer you would like to give people is entirely polite and appropriate. I'm running your letter not because I think you need my help or advice, but so that others in your situation - and those who care about them - can learn from what you said.
Sick people get poked and prodded and asked all kinds of invasive questions by medical professionals, constantly. It is no wonder that they want some bodily integrity and personal privacy when they are in their homes, or workplaces, or anywhere else. If you have a friend, colleague, or neighbor who is living with a difficult illness, don't interrogate him or her at every encounter. It's better to say something like "I know you're going to have your good days and your bad ones. I want you to know that I'm concerned, but I'm not going to ask a lot of questions, because I want to respect your privacy. But I'm here whenever you want to talk." Then just be plain old extra-nice - call a sick neighbor before making a grocery run to see if you can pick something up for him; clip a cartoon that a sick co-worker might enjoy and leave it on her desk; be sensitive to their moods.
And if you are the sick person, take charge. This is your illness. You don't get to be in control of a whole lot, but you do get to be in control of how and when you talk about it. Let the people around you know that you'll tell them when and if things change, and that you know they are there for you when you need them. In a group setting, such as an office, it might also be helpful to have someone (the boss or a close colleague) run interference for you. This person can be your deputy to remind other people of how you'd like to be treated or to pass on the information that you want disseminated."
For Cancer Patients, Empathy Goes a Long Way
By Denise Grady : NY Times Article : January 8, 2008
Four years ago, my sister found out she had two types of cancer at the same time. It was like being hit by lightning — twice.
She needed chemotherapy and radiation, a huge operation, more chemotherapy and then a smaller operation. All in all, the treatment took about a year. Thin to begin with, she lost 30 pounds. The chemo caused cracks in her fingers, dry eyes, anemia and mouth sores so painful they kept her awake at night. A lot of her hair fell out. The radiation burned her skin. Bony, red-eyed, weak and frightfully pale, she tied scarves on her head, plastered her fingers with Band-Aids and somehow toughed it out.
She saw two doctors quite often. The radiation oncologist would sling her arm around my sister’s frail shoulders and walk her down the corridor as if they were old friends. The medical oncologist kept a close watch on the side effects, suggested remedies, reminded my sister she had good odds of beating the cancer and reassured her that the hair would grow back. (It did.)
People in my family aren’t huggy-kissy types, but my sister greatly appreciated the warmth and concern of those two women. She trusted them completely, and their advice. Now healthy, she says their compassion played a big part in helping her get through a difficult and frightening time.
Research supports the idea that a few kind words from an oncologist — what used to be called bedside manner — can go a long way toward helping people with cancer understand their treatment, stick with it, cope better and maybe even fare better medically.
“It is absolutely the role of the oncologist” to provide a bit of emotional support, said Dr. James A. Tulsky, director of the Center for Palliative Care at Duke University Medical Center.
But in a study published last month in the Journal of Clinical Oncology, Dr. Tulsky and other researchers found that doctors and patients weren’t communicating all that well about emotions.
The researchers recorded 398 conversations between 51 oncologists and 270 patients with advanced cancer. They listened for moments when patients expressed negative emotions like fear, anger or sadness, and for the doctors’ replies.
A response like “I can imagine how scary this must be for you” was considered empathetic — a “continuer” that would allow patients to keep expressing their emotions. But a comment like “Give us time; we are getting there” was labeled a “terminator” that could shut the patient down.
The team found that doctors used continuers only 22 percent of the time. Male doctors were worse at it than female ones: 48 percent of the men never used continuers, as opposed to 20 percent of the women.
Surprisingly, Dr. Tulsky said, the patients didn’t bring up emotions that often — in only 37 percent of the conversations.
“That’s extraordinary,” he said. “These are advanced cancer patients.”
The reason is not clear, but he said the patients might not expect emotional support from doctors. Feelings were most often discussed when both doctor and patient were female, and younger doctors who considered themselves more “socioemotional” than “technical” gave empathetic replies more often.
One doctor who was especially good with patients, and who often consulted on very serious cases, opened discussions with new patients by saying, “Tell me what you understand about your illness,” Dr. Tulsky said. And when patients wept, this doctor would pause and wait until they were ready to continue the discussion.
By contrast, with other doctors, Dr. Tulsky said, “There were a number of times when patients brought up emotional content and it went right by the doctors.”
For instance, a patient would say, “I’m scared,” and the doctor would go off on a “scientific riff” about the disease, Dr. Tulsky said, adding, “We saw that a lot.”
The doctors don’t lack empathy, he said. They just have trouble expressing it.
“Oncologists care deeply for their patients,” said Kathryn I. Pollak, the first author of the study and a social psychologist at Duke. “It’s clear from listening to the tapes.”
Cancer patients and oncologists have unique, intense relationships, she said, because the patients are fighting for their lives.
Even so, oncologists sometimes miss signs of distress, particularly if those signs are indirect, she said. For example, a patient may ask how big the tumors are, and the doctor may answer in millimeters — when the patient really wants to know: “Is the cancer getting worse? Am I dying?”
The good news, she and Dr. Tulsky said, is that most doctors can be taught to respond in more helpful ways. Brief, empathetic responses will suffice, the researchers said; they are not recommending extensive counseling or endless dialogue.
Patients may benefit from some coaching, too. It’s perfectly reasonable, Dr. Tulsky said, to talk to an oncologist about sadness or fears about treatment, and to ask for help.
“You’re vulnerable when you express your emotions,” Dr. Pollak said. “But I would advise patients to be as direct as possible.”
Breast Cancer Overview
Breast cancer is a cancer that starts in the tissues of the breast.
The disease, it has become clear, does not always behave in a uniform way. It’s not even one disease. There are at least four genetically distinct breast cancers. They may have different causes and definitely respond differently to treatment. Two related subtypes, luminal A and luminal B, involve tumors that feed on estrogen; they may respond to a five-year course of pills like tamoxifen or aromatase inhibitors, which block cells’ access to that hormone or reduce its levels. In addition, a third type of cancer, called HER2-positive, produces too much of a protein called human epidermal growth factor receptor 2; it may be treatable with a targeted immunotherapy called Herceptin. The final type, basal-like cancer (often called “triple negative” because its growth is not fueled by the most common biomarkers for breast cancer — estrogen, progesterone and HER2), is the most aggressive, accounting for up to 20 percent of breast cancers. More prevalent among young and African-American women, it is genetically closer to ovarian cancer.
Many breast cancers are sensitive to the hormone estrogen. This means that estrogen causes the breast cancer tumor to grow. Such cancer is called estrogen receptor positive cancer or ER positive cancer.
Some women have what's called HER2-positive breast cancer. HER2 refers to a gene that helps cells grow, divide, and repair themselves. When cells have too many copies of this gene, cells -- including cancer cells -- grow faster. Experts think that women with HER2-positive breast cancer have a more aggressive disease and a higher risk of recurrence than those who do not have this type.
Alternative Names
Cancer - breast; Carcinoma - ductal; Carcinoma - lobular
Causes
Over the course of a lifetime, 1 in 8 women will be diagnosed with breast cancer.
Risk factors
you cannot change include:
- Age and gender -- Your risk of developing breast cancer increases as you get older. The majority of advanced breast cancer cases are found in women over age 50. Women are 100 times more likely to get breast cancer then men.
- Family history of breast cancer -- You may also have a higher risk for breast cancer if you have a close relative has had breast, uterine, ovarian, or colon cancer. About 20 - 30% of women with breast cancer have a family history of the disease.
- Genes -- Some people have genes that make them more prone to developing breast cancer. The most common gene defects are found in the BRCA1 and BRCA2 genes. These genes normally produce proteins that protect you from cancer. But if a parent passes you a defective gene, you have an increased risk for breast cancer. Women with one of these defects have up to an 80% chance of getting breast cancer sometime during their life.
- Menstrual cycle -- Women who get their periods early (before age 12) or went through menopause late (after age 55) have an increased risk for breast cancer.
- Alcohol use -- Drinking more than 1 - 2 glasses of alcohol a day may increase your risk for breast cancer.
- Childbirth -- Women who have never had children or who had them only after age 30 have an increased risk for breast cancer. Being pregnant more than once or becoming pregnant at an early age reduces your risk of breast cancer.
- DES -- Women who took diethylstilbestrol (DES) to prevent miscarriage may have an increased risk of breast cancer after age 40. This drug was given to the women in the 1940s - 1960s.
- Hormone replacement therapy (HRT) -- You have a higher risk for breast cancer if you have received hormone replacement therapy for several years or more. Many women take HRT to reduce the symptoms of menopause.
- Obesity -- Obesity has been linked to breast cancer, although this link is controversial. The theory is that obese women produce more estrogen, which can fuel the development of breast cancer.
- Radiation -- If you received radiation therapy as a child or young adult to treat cancer of the chest area, you have a significantly higher risk for developing breast cancer. The younger you started such radiation, the higher your risk -- especially if the radiation was given when a female was developing breasts.
The National Cancer Institute provides an online tool to help you figure out your risk of breast cancer. See: www.cancer.gov/bcrisktool
Symptoms »
Early breast cancer usually does not cause symptoms. This is why regular breast exams are important. As the cancer grows, symptoms may include:
- Breast lump or lump in the armpit that is hard, has uneven edges, and usually does not hurt
- Change in the size, shape, or feel of the breast or nipple -- for example, you may have redness, dimpling, or puckering that looks like the skin of an orange
- Fluid coming from the nipple -- may be bloody, clear-to-yellow, or green, and look like pus
Symptoms of advanced breast cancer may include:
- Bone pain
- Breast pain or discomfort
- Skin ulcers
- Swelling of one arm (next to breast with cancer)
- Weight loss
Exams and Tests »
The doctor will ask you about your symptoms and risk factors, and then perform a physical exam, which includes both breasts, armpits, and the neck and chest area. Additional tests may include:
- Mammography to help identify the breast lump
- Breast MRI to help better identify the breast lump
- Breast ultrasound to show whether the lump is solid or fluid-filled
- Breast biopsy, needle aspiration, or breast lump removal to remove all or part of the breast lump for closer examination by a laboratory specialist
- CT scan
- Sentinal lymph node biopsy
- PET scan
Breast cancer stages range from 0 to IV. Breast cancer that has not spread is called ductal carcinoma in situ (DCIS), or noninvasive breast cancer. If it spreads, the cancer is called invasive breast cancer. The higher the number, the more advanced the cancer.
In-Depth Diagnosis »
Treatment »
Treatment is based on many factors, including type and stage of the cancer, whether the cancer is sensitive to certain hormones, and whether or not the cancer overproduces (overexpresses) a gene called HER2/neu.
In general, cancer treatments may include:
- Chemotherapy medicines to kill cancer cells
- Radiation therapy to destroy cancerous tissue
- Surgery to remove cancerous tissue -- a lumpectomy removes the breast lump; mastectomy removes all or part of the breast and possible nearby structures
- Hormonal therapy to block certain hormones that fuel cancer growth
- Targeted therapy to interfere with cancer cell grow and function
Targeted therapy, also called biologic therapy, is a newer type of cancer treatment. This therapy uses special anti-cancer drugs that identify certain changes in a cell that can lead to cancer. One such drug is trastuzumab (Herceptin). For women with stage IV HER2-positive breast cancer, Herceptin plus chemotherapy has been shown to be work better than chemotherapy alone. Studies have also shown that in women with early stage HER2-positive breast cancer, this medicine plus chemotherapy cuts the risk of the cancer coming back by 50%.
Cancer treatment may be local or systemic.
- Local treatments involve only the area of disease. Radiation and surgery are forms of local treatment.
- Systemic treatments affect the entire body. Chemotherapy is a type of systemic treatment.
- Stage 0 and DCIS -- Lumpectomy plus radiation or mastectomy is the standard treatment. There is some controversy on how best to treat DCIS.
- Stage I and II -- Lumpectomy plus radiation or mastectomy with some sort of lymph node removal is standard treatment. Hormone therapy, chemotherapy, and biologic therapy may also be recommended following surgery.
- Stage III -- Treatment involves surgery possibly followed by chemotherapy, hormone therapy, and biologic therapy.
- Stage IV -- Treatment may involve surgery, radiation, chemotherapy, hormonal therapy, or a combination of such treatments.
In-Depth Treatment »
Support Groups
Talking about your disease and treatment with others who share common experiences and problems can be helpful. See: Cancer support group
Outlook (Prognosis)
How well you do after being treated for breast cancer depends on many things. The more advanced your cancer, the poorer the outcome.
The 5-year survival rate refers to the number of patients who live at least 5 years after their cancer is found. According to the American Cancer Society (ACS), the 5-year survival rates for persons with breast cancer that is appropriately treated are as follows:
- 100% for stage 0
- 100% for stage I
- 92% for stage IIA
- 81% for stage IIB
- 67% for stage IIIA
- 54% for stage IIIB
- 20% for stage IV
New, improved treatments are helping persons with breast cancer live longer than ever before. However, even with treatment, breast cancer can spread to other parts of the body. Sometimes, cancer returns even after the entire tumor is removed and nearby lymph nodes are found to be cancer-free.
You may experience side effects or complications from cancer treatment. For example, radiation therapy may cause temporary swelling of the breast, and aches and pains around the area. Ask your doctor about the side effects you may have during treatment.
When to Contact a Medical Professional
Contact your health care provider for an appointment if:
- You have a breast or armpit lump
- You are a woman age 40 or older and have not had a mammogram in the last year
- You are a woman age 35 or older and have a mother or sister with breast cancer, or have already had cancer of the breast, uterus, ovary, or colon.
- You do not know how or need help learning how to perform a breast self-examination
Many risk factors -- such as your genes and family history -- cannot be controlled. However, a healthy diet and a few lifestyle changes may reduce your overall chance of cancer in general.
Breast cancer is more easily treated and often curable if it is found early.
Early detection involves:
- Breast self-exams (BSE)
- Clinical breast exams by a medical professional
- Screening mammography
Women between the ages 20 and 39 should have a doctor examine their breasts at least once every 3 years.
After age 40:
- Women 40 and older should have a mammogram every 1 - 2 years, depending on their risk factors. Women should call their doctor immediately if they notice in change in their breasts whether or not they do proutine breast self-exams.
- Women 40 and older should have a complete breast exam by a health care provider every year.
The Price of Beauty
Some Hidden Choices in Breast Reconstruction
By Natasha Singer
For many cancer patients undergoing mastectomies, reconstructive breast surgery can seem like a first step to reclaiming their bodies.
But even as promising new operations are gaining traction at academic medical centers, plastic surgeons often fail to tell patients about them. One reason is that not all surgeons have trained to perform the latest procedures. Another reason is money: some complex surgeries are less profitable for doctors and hospitals, so they have less of an incentive to offer them, doctors say.
“It is clear that many reconstruction patients are not being given the full picture of their options,” said Diana Zuckerman, the president of the National Research Center for Women and Families, a nonprofit group in Washington.
One patient, Felicia Hodges, a 41-year-old magazine publisher in Newburgh, N.Y., chose a double mastectomy after she was found to have cancer of the right breast in 2004. She consulted a plastic surgeon, who offered her only reconstruction with breast implants, she said.
Ms. Hodges chose implants filled with saline, a procedure for which more than a third of reconstruction patients underwent a follow-up operation, studies show.
Ms. Hodges developed wound-healing problems that required her surgeon to remove her right implant, and she was left with a concave chest with a quarter-size hole in it, she said; she described the experience as “worse than the mastectomy.”
Then Ms. Hodges discovered a chat room on the patient-information Web site breastcancer.org, where women share detailed information about breast reconstruction beyond what they may have heard from their doctors.
Ms. Hodges learned of newer, more complex procedures that involve transplanting a wedge of fat and blood vessels from the abdomen or buttocks, which would be refashioned to form new breasts.
“It’s unfortunate that a lot of general surgeons, breast surgeons and plastic surgeons don’t mention it,” said Ms. Hodges, who underwent one of the surgeries, known as a GAP flap, last year. A lifelong athlete and a karate enthusiast, she is now back at her dojo.
To raise awareness of breast reconstruction and to market it to patients, the American Society of Plastic Surgeons has adopted the vocabulary of the movement to support a woman’s freedom to choose an abortion, adjusting it for women with breast cancer. Although women “don’t choose their diagnosis, they can choose to go ahead with reconstruction or not, and with the aid of a knowledgeable plastic surgeon they can choose what their options might be,” Dr. Linda G. Phillips, a plastic surgeon in Galveston, Tex., said in a telephone news conference organized by the plastic surgery society to mark Breast Cancer Awareness Month in October. “Then they have that much more power over their lives if they have that power to choose.”
But for many patients, the options may be limited because their doctors are not proficient in the latest procedures. Dr. Michael F. McGuire, the president-elect of the American Society of Plastic Surgeons, said it is not unusual for surgeons to omit telling patients about operations they do not perform. He compared the rise of more complex breast reconstruction to the advent in the late 1980s of minimally invasive laparoscopic surgery of the gallbladder.
“At the time, only a small percentage of surgeons were doing them and doing them well,” said Dr. McGuire, who is chief of plastic surgery at St. Johns Hospital in Santa Monica, Calif. “If you were not familiar with laparoscopic gallbladder surgery, you were still doing it the traditional way with an open great big scar across the abdomen.”
Uneven information about reconstructive options is a subset of a larger problem, said Dr. Amy K. Alderman, an assistant professor of plastic surgery at the University of Michigan Medical School in Ann Arbor. Only one third of women undergoing operations for breast cancer said their general surgeons had discussed reconstruction at all, according to a study by Dr. Alderman of 1,844 women in Los Angeles and Detroit that was published in February in the journal Cancer.
“In the big picture, it would be great if we could just get doctors to tell people they have an option of reconstruction,” Dr. Alderman said.
Once patients are so informed, she added, plastic surgeons should tell them of options beyond implants. “The next hurdle would be letting them know that using their own tissue is an option, because my guess is that they are not even getting that far in the discussion,” Dr. Alderman said.
About 66,000 women in the United States had mastectomies in 2006, the latest figures available, according to the federal government. And about 57,000 women had reconstructive breast surgery last year, according to estimates from the plastic surgery society.
For many of these women, the operations were more about feeling whole again than about restoring their appearance.
Implant surgery is the most popular reconstruction method in the United States. Often performed immediately after a mastectomy, it initially involves the least surgery — usually a short procedure to insert a temporary balloonlike device called an expander — and the shortest recovery time.
But implants come with the likelihood of future operations. Within four years of implant reconstruction, more than one third of reconstruction patients in clinical studies had undergone a second operation, primarily to fix problems like ruptures and infections, and a few for cosmetic reasons, according to studies submitted by implant makers to the Food and Drug Administration. (Reconstructive patients are more likely to develop complications after implant surgery than cosmetic patients with healthy breast tissue.)
Complication rates for newer flap procedures like the one Ms. Hodges had have not been well studied, though many surgeons say they are less likely to require follow-up operations. The most common flap procedure, named a TRAM flap, for the rectus abdominis muscle, cuts away a portion of abdominal fat, as well as underlying muscle containing blood vessels, and uses the tissue to rebuild a breast. The vessels provide a blood supply for the new breast mound. The procedure promises a more lifelike look and feel, but it carries a risk of a weaker abdominal wall and hernia.
Another flap method, the DIEP free flap, is the newest and most intricate, named for the abdomen’s deep inferior epigastric perforator vessels. It involves moving abdominal fat and blood vessels, but no muscle. The DIEP flap theoretically holds out the promise of a reduced likelihood of abdominal problems. But Dr. Alderman cautioned that researchers have not yet conducted rigorous national studies that would establish a complication rate. Sometimes the flaps fail and need to be surgically removed.
All breast reconstructions involve a tradeoff, said Dr. Scott L. Spear, the chief of plastic surgery at Georgetown University Hospital in Washington. “The implants have a lower investment in the short term and a longer-term higher risk of having to redo it,” said Dr. Spear, who is a paid consultant to the implant maker Allergan. “The flaps have a bigger investment in the short run, but you are less likely to revise it in the long run.”
Dr. Spear said plastic surgeons sometimes fail to mention the flap options for the simple reason that implant surgery can be more profitable. “It’s really embarrassing to say so, but, from a purely selfish point of view, if you are looking at insurance reimbursement for TRAM and DIEP flaps, it’s a loss leader,” Dr. Spear said. “They really require so much time and effort that a surgeon thinks, ‘Man, I can’t afford to do this.’ ”
Nevertheless, Georgetown, long a center of expertise for implant reconstruction, recently hired a plastic surgeon who specializes in the more complicated tissue flaps.
A typical surgeon in Manhattan charges insurers about $7,000 for a one-hour implant reconstruction, but for a DIEP procedure that takes 6 to 12 hours, the going rate is $15,500.
Although health insurers are required by federal law to cover reconstructive breast surgery after mastectomies, the government does not set private insurance rates. Flap reconstruction typically requires a higher out-of-pocket co-payment than implant surgery.
“In certain geographical areas where it is badly reimbursed, it’s a disincentive for plastic surgeons even to do the work,” said Dr. Richard A. D’Amico, a past president of the American Society of Plastic Surgeons, speaking of the flap procedures.
Dr. Stephen R. Colen, the chairman of plastic surgery at Hackensack University Medical Center in New Jersey, said plastic surgeons might also not inform patients about the flap procedures because they lacked the advanced training in microvascular surgery needed to perform them.
“A lot of patients are offered implants because the surgeon does not know how to do the flap, and then the implant fails and they need the flap anyway,” Dr. Colen said.
To counter doctors who might routinely steer patients to implants, Dr. Colen started a program at his hospital in which women can meet directly with an impartial physician’s assistant, who goes over the benefits and drawbacks of reconstruction methods.
“We sort of wanted to take the flow of the patient out of the control of the physician and put it in the hands of a medical person who has no personal or financial interest,” Dr. Colen said.
Dotti Campbell, a retired nurse in Crossville, Tenn., said the plastic surgeon who performed her breast reconstruction after a mastectomy offered her only an implant. “That was his procedure,” said Ms. Campbell. Her first implant developed hardened scar tissue and required replacement. Her replacement implant ruptured. Now she is going to have an operation to replace the second implant, she said.
The DIEP flap was developed by Dr. Robert J. Allen, a plastic surgeon in New York, New Orleans and Charleston, S.C., in 1992. Now surgeons at hospitals including the University of Pennsylvania Health System in Philadelphia and Beth Israel Deaconess Medical Center in Boston specialize in the procedure.
Dr. Allen and Dr. Joshua L. Levine, who operate together in Manhattan, often recommend a prospective patient talk at length with patients of theirs who have had a successful flap procedure, like Ms. Hodges, the magazine publisher and karate student, as well as with those whose first flap reconstructions failed and required a second procedure.
“Patients should not necessarily accept the first thing they hear as the end-all, because that is not necessarily the full story,” Dr. Allen said.
Mammography is the most effective way of detecting breast cancer early.
Certain women at high risk for breast cancer may have a breast MRI along with their yearly mammogram. Ask your doctor if your need an MRI.
Screening for breast cancer is a topic filled with controversy. A woman needs to have an informed and balanced discussion with her doctor, along with doing additional reading and researching on her own, to determine if mammography is right for her.
Tamoxifen is approved for breast cancer prevention in women aged 35 and older who are at high risk.
Women at very high risk for breast cancer may consider preventive (prophylactic) mastectomy, which is the surgical removal of the breasts. Possible candidates for this procedure may include those who have already had one breast removed due to cancer, women with a strong family history of breast cancer, and persons with genes or genetic mutations that raise their risk of breast cancer.
- Get a baseline mammogram at age 35 and an annual mammogram from 40 onwards.
- Any persistent breast lump or abnormality of the breast or nipple should be reported to a physician as soon as possible.
Invasive Breast Cancer Self Assessment Risk Calculator :
http://www.cancer.gov/bcrisktool/
The New Front in Breast Cancer: After Treatment Ends
By Melinda Beck : WSJ : October 11, 2011
The mastectomy, chemotherapy, radiation and hormone treatments are behind them. Now, the growing ranks of breast cancer survivors face long-term issues that are often overlooked.
Paige Capossela GreenCarie Capossela, 43, of Wellesley, Mass., is one of 2.5 million breast-cancer survivors in the U.S. She co-founded a program for young breast-cancer patients at Dana-Farber Cancer Institute. Ms. Capossela is shown here with her husband, Rob Adler, and kids, Brennan and Sari.
"The second-hardest phase—after the initial diagnosis—is the minute your treatment ends," says Carie Capossela, 43 years old, who marked 10 years as a breast-cancer survivor in June. "The reality sets in that you have to live with this the rest of your life and the safety net is gone. That's when you really freak out."
Despite all the pink ribbons and billions spent on breast-cancer research, there is surprisingly little data on issues that linger or emerge for the 10, 15 or more years after treatment ends. Although the odds of relapse fall with time, they never completely disappear.
Some patients who had treatments years ago are encountering delayed side effects such as heart problems, nerve damage, osteoporosis and secondary cancers. Survivors say some of the toughest issues are social and emotional, according to a survey of 1,043 breast-cancer patients to be released Tuesday by the nonprofit Cancer Support Community (CSC) with funding from Susan G. Komen for the Cure.
Mimi FerraroMimi Ferraro, 35, of Brooklyn, N.Y., was diagnosed in 2006. She now is on a vegan diet and teaches yoga to other women with cancer.
Nearly 90% of respondents said they had at least one physical, psychological or social problem that was moderate to severe. Mentioned most frequently were fatigue, sexual dysfunction and sleep issues. What's more, 24% of those surveyed (almost all women, with an average age of 55 and averaging 5.6 years since diagnosis) reported being depressed—about twice the national rate.
The survey also highlighted the need to give survivors better guidance for the years ahead. Only 10% of respondents had received a "survivorship care plan" summarizing what past tests and treatments they had, what side effects to expect, what lifestyle changes to make and where to obtain follow-up care—even though 96% said they wanted one.
"Patients feel like they are walking out of active treatment and walking off a cliff," says Kim Thiboldeaux, president and CEO of the Cancer Support Community. "They're wondering, 'Am I coming back to you or to my primary-care doctor? When is my next mammogram? What kind of chemo did I have? How often do I need to get blood work?' " Having all that written down and portable can help manage some of the concerns that people have, she says.
Some major cancer centers have started "survivorship" centers specifically to address such issues. Currently, about 85% of cancer patients are treated in community settings that have fewer resources. Beginning next year, however, the American College of Surgeons plan to make providing survivorship-care plans, as well as distress screening for cancer patients, a criteria for accreditation.
Doctors are also starting to pay more attention to long-term side effects of treatments. Researchers are exploring why fatigue is so common among cancer patients months or even years after treatment. "They never feel rested, and that impacts quality of life in all areas—including intimacy, sexuality, the workplace and interpersonal relations," says Susan Brown, director of health education for the Susan G. Komen for the Cure.
Some obstetrician/gynecologists say that medical oncologists, in their zeal to keep the risk of recurrence as small as possible, are ignoring quality-of-life issues.
One big battle is over estrogen. Patients whose tumors are fueled by estrogen—about two-thirds of the total—are typically put on estrogen-blocking drugs, which bring on instant menopausal symptoms, including hot flashes, night sweats, sleep disturbances and cognitive issues.
Women who are premenopausal are generally given tamoxifen, which also raises the risk of blood clots and uterine cancer. Women who are postmenopausal are given aromatase-inhibitors (AIs), which eliminate estrogen from a woman's body. About half of women on AIs complain of severe joint pain. The drugs can also hasten osteoporosis.
Although women are often loath to mention it, eliminating estrogen also creates sexual issues, particularly vaginal dryness. With time, "the hot flashes get better, but the vaginal dryness gets worse," says Mary Jane Minkin, a professor of obstetrics and gynecology at Yale University School of Medicine. A topical estrogen cream can alleviate the dryness—but some medical oncologists are concerned that even the tiny amount of estrogen that enters a woman's bloodstream from such creams could prompt a cancer recurrence.
Some oncologists now tell patients to stay on estrogen-blocking drugs for 10 years, up from five, after one study found that cut the risk of recurrence to 3.6% from 6% and increased four-year survival by 0.4%. Yet only about half of patients continue to take the drugs even for full five years, according to a study in the Journal of Clinical Oncology last year.
The tradeoffs are different depending on a patient's age, stage of cancer and prognosis. Nancy Boozer, 58, of Doraville, Ga., has held metastatic breast cancer at bay for 14 years thanks to an aromatase inhibitor, a bone-building drug and pain killers. She says she has chronic pain from both the cancer and the drugs—but she says it's worth it. "Sometimes I have my own little pity parties and I'm like, 'Woe is me,' but then I snap myself out of it. I'm glad to be here," she says.
Younger women often have tougher choices and more aggressive breast cancers. Chemotherapy and radiation can permanently damage ovaries, but with advance planning, women can have their eggs harvested for future use.
Mimi Ferraro, a singer/songwriter in Brooklyn, N.Y., who was diagnosed with breast cancer five years ago at age 29, alternated between tamoxifen and the hormone-blocking drug Lupron because the side effects were so severe. In addition to "instant menopause," she says she developed a large ovarian cyst and found it impossible to sleep.
Now, she says, her prognosis is excellent—but it's not clear whether she'll be able to get pregnant and she finds it harder to memorize songs. "I don't feel like my brain is back—I don't know if it ever will be," says Ms. Ferraro, who is writing a rock musical about young cancer patients.
Like her, many breast-cancer survivors say they find some peace of mind in reaching out to help other breast-cancer patients.
Ms. Capossela co-founded a program for young women with breast cancer at Dana Farber Cancer Institute. Ms. Boozer often meets with others at the CSC in Atlanta. Janelle Hail, who was diagnosed with breast cancer in 1980, founded the National Breast Cancer Foundation in 1991, mainly to provide free mammograms to women who couldn't afford them. Last year, the group provided 32,865 free mammograms through hospitals nationwide. "When I was first diagnosed, I felt like I'd been shot. I had a big black hole in me," says Ms. Hail. "When I started thinking about how I could help other women with breast cancer, that's when that a hole started healing up."
The Hoffman Breast Center at Mount Auburn Hospital
617-499-5755
For the convenience of their patients the center is open four evenings a week until 7:30pm
