Breast cancer: A radical solution
Marsha Ginsburg
San Francisco Examiner STAFF April 18, 1999
Fear is driving some healthy women to get mastectomies Here's what S.J. Diaz remembers most about her mother: that she was young-at-heart, a trusted confidante not only to her daughter but also to teenage friends, many of whom would come over for talks while home from college. Here's what else Diaz remembers about her mother: that she missed her daughter's wedding day. She missed the birth of her grandson. Breast cancer killed her at age 55.
Although Diaz is in her early 30s and in good health, she is making sure history doesn't repeat itself. She's having both of her breasts removed. "I view it as an insurance policy," said the Peninsula executive, who has had several noncancerous lumps removed from her breasts over the past eight years. "It doesn't make sense not to have it. You have insurance for your car, your house ... why not your life?"
More women than ever are inquiring about a surgery once unthinkable - preventive mastectomy and reconstructive breast implants - in the wake of a recent study showing such operations cut the risk of getting breast cancer by 90 percent. Doctors and geneticists with UCSF-Stanford and other leading medical centers around the nation say they are seeing a small surge in calls from healthy but anxious women who wonder if they should consider the operation.
"That's what you would expect after a media blitz," says Dr. Susan Kutner, a breast surgeon and chairwoman of Kaiser Permanente's Breast Cancer Task Force in Northern California. "There's a definite interest in this issue." The January study by the Mayo Clinic looked back at 639 high- and moderate-risk women who had preventive mastectomies over a 30-year period. The study found there should have been 20 deaths from breast cancer. But two women died, drawing the conclusion that preventive mastectomies reduce cancer incidence and death by 90 percent.
Those results offer the first evidence that even women with a BRCA genetic mutation - raising their lifetime risk of breast cancer to as much as 85 percent - can avoid cancer through early mastectomies. At the same time, the results heighten worry among many doctors and patient advocates, concerned that women's fear of breast cancer often outweighs their real risk, and may lead to unnecessary disfiguring surgery. "Breast cancer is the only disease in which a woman will feel threatened by a lump in her neighbor's breast," said Dr. Patrick Borgen, chief breast surgeon at Memorial Sloan-Kettering Cancer Center in New York.
More options
No one keeps national statistics on preventive mastectomies. Most doctors say the surgery, which can cost $30,000 with reconstruction, remains relatively uncommon. Indeed, medicine has in the past two decades moved away from recommending double mastectomies whenever a woman is diagnosed with breast cancer, toward less invasive lumpectomies followed by radiation and chemotherapy. But while treatment options have become less severe, polls show that women today fear breast cancer more than any other disease. Heart attacks and lung cancer may kill more American women each year than the 43,000 expected to die of breast cancer this year, but it is breast cancer that can strike a woman in her 30s or 40s. And though today 65 percent of women with breast cancer are cured, a sobering 35 percent will die.
Diaz had considered a preventive mastectomy for years, but never thought a doctor would take her seriously. When she saw the articles in January about the Mayo Clinic study, she sought out a breast surgeon. "I consider myself a practical person," she said. "On my list of priorities, my breasts mean nothing." Being around to watch her toddler son grow up means everything. She says her husband fully supports her decision. Diaz has not been tested for a BRCA genetic mutation. It is enough that her mother died of breast cancer in the prime of life, and that she has had five scares - lumps that all proved benign - since 1991. If there was one fault in her mother, Diaz says, it was being "too stoic."
Neglecting her health
Too busy taking care of children to take care of herself, Diaz's mother didn't routinely examine her breasts. In 1988, she phoned her daughter to say that doctors had "found a little something," but not to worry. Weeks later, she called again to say that "little something" was breast cancer, and she was undergoing a total mastectomy. Diaz was devastated. "I'll never forget that day," she said, tears forming in her eyes. "It was terrifying."
Her mother battled cancer for three years before dying. Eight months after she died, Diaz discovered the first noncancerous lump in her own breast. She wants a life free of biopsies and constant fear. "I've got a lot to live for and I don't want to get breast cancer. That's all I need to know."
Still, the procedure is passionately debated among doctors and counselors. One member of the San Francisco-based advocacy group Breast Watch suggested the headline "Nazi Medicine" on a preventive mastectomy article in the spring newsletter. Dr. Laura Esserman, surgeon and director of the Breast Cancer Center at UCSF, worries women may not carefully consider the full impact on their lives,especially because studies show that women tend to overestimate their risk. "It's a significant intervention," said Esserman."There's no blanket recommendation except never rush."
She and other doctors say women need to ask themselves tough questions first. Has the patient thought about how losing her breasts could affect her self-esteem or her relationships? Is she prepared for the high cost and discomfort that comes from surgery and reconstruction? Is she aware that her new breasts will feel harder than flesh and will have no sensation? Does she have it in her to battle insurance companies in the event of a dispute? Is she truly at "high risk" of getting breast cancer or just afraid?
Nearly every woman can cite the oft-quoted statistic: 1 in 8 American women will get breast cancer sometime in their lives. But that simple figure - translating to 12 percent - greatly overstates the risk for most women. In fact, in the general population, the risk is 1 in 200 by age 40, rising to 1 in 50 by age 50, and reaching 1 in 8 only at age 80, by which time many would have already died from the predominant killer of women, heart disease.
Women who began menstruating early, before age 12, or who had children in their 30s, are at higher risk, but only by about 2 or 3 percent. Those with close relatives, a mother or sister, who developed breast cancer before menopause may be at even higher risk. And the highest risk, of course, is among women who have a mutation in the BRCA 1 or BRCA 2 genes, which can be passed to them by mother or father. Their risk is estimated at 55 percent for the 1 in 40 women of Ashkenzi Jewish descent who carry a mutation, and up to 85 percentfor the 1 in 200 to 500 gentile women who carry one of the mutations.
Calculating risk
Still it is important to remember, geneticists say, that only 5 to 10 percent of American women who get breast cancer have a family history of the disease. Women can ask their doctors to calculate risk via the popular Gail Model, but even that mathematical tool is controversial. Pat Kelly, a geneticist with Catholic Healthcare West, believes it is flawed because, among other things, it adds one risk factor on top of another, compounding true risk. As a definition, "high risk is evolving," said Dr.Mark Rounsaville, a radiation oncologist at California Pacific Medical Center, and women are often confused by contradictory studies. Consider: Just this year two studies found no link between breast cancer and the consumption of fat and alcohol, though earlier studies had suggested links.
Rounsaville and other doctors say women considering preventive mastectomy must see a geneticist because many doctors "are inadequately informed to deal with risk analysis and counseling." Dr. Gail Lebovic, a breast surgeon and clinical assistant professor of surgery at StanfordUniversity, goes even further. She insists patients see a psychologist, another surgeon and a cancer specialist before making a decision.
The Mayo Clinic study, while spurring interest in preventive mastectomies, also underscores the need for caution, doctors say. Of the 639 high- and moderate-risk women who had the surgery, statistically just 20 were expected to get breast cancer. The others may never have needed the surgery, although obviously no one can predict which high-risk woman will get the disease. More troubling is that when Mayo researchers recruited women for the study, they had to exclude 400 women who underwent breast removal because of a benign lump or general breast pain - factors that, alone, no longer place them even in the moderate-risk category.
Lastly, study author Dr. Lynn Hartmann emphasizes that while the study showed preventive mastectomies hugely reduce the risk, the surgery offers no guarantee. Ten percent of the women expected to get breast cancer got it.
Hard decisions
Still, for women like Helene Jaffe of Greenbrae, this most drastic option made sense. Jaffe, 56, was diagnosed at 51 with ovarian cancer, which is also linked to the BRCA genetic mutation. When a blood test for the mutations became available, Jaffe sought it. First, she answered a battery of questions on psychological tests, including whether she believed in God and other sensitive questions "you may not have thought of before." Then she took the test, and learned she carried the mutation. When all the counseling was said and done, Jaffe was left with a sobering figure: She had a 75 to 90 percent chance of getting breast cancer.
"I said, "You've made up my mind. Off with my boobs.'... Having my breasts removed was the easiest decision I ever made," she said. "How can you learn you're sitting on a time bomb - because it really is just waiting - and do nothing?" Her mastectomy and reconstructive surgery was "no picnic," she said. She underwent nine hours of surgery, and spent four days in the hospital before she went home to recover for another month. Because some of her stomach muscles were removed and used to create new breast tissue in place of implants, Jaffe woke up with a vastly changed body. For 10 days, two tubes drained fluid from underneath the skin around her stomach. She couldn't walk or sit normally for three weeks, and couldn't drive for six weeks.
Still, she says, she preferred the surgery to the chemotherapy she underwent when she had ovarian cancer. Chemotherapy "was like an out of body experience. It's like being between heaven and hell," she said. She was nauseous most of the time; she lost her power of concentration to such extent that she couldn't read a book for nearly a year. Jaffe's husband of 35 years, Stephen, says something so drastic inevitably changes the romance in the relationship, but "it wasn't a lobotomy. She didn't have a personality change. She is more at ease now."
Ultimately, Helene Jaffe says, the pain of surgery and adjustments were all worth it: She no longer fears getting breast cancer.
In search of peace
Gaynell Rogers, 48, wishes for the same comfort.The Novato woman is among many who have already had cancer, and are now considering a preventive mastectomy to prevent a recurrence. Rogers is a vibrant mother of a 12-year-old daughter, and juggles a busy schedule managing composers and recording artists. She wanted to do everything to preserve her breasts when she was diagnosed with a cancerous lump in her left breast18 months ago. But because of the extent of the cancer, she underwent a mastectomy, then went in for a second operation to remove some remaining cancerous cells near her lymph nodes, she says.
Her doctors said she was free of cancer after the operations, but a trusted physician friend in Norway reviewed her records and said the cancerous cells were too close to remaining breast tissue.
So after two surgeries, Rogers underwent radiation, which left her with every side effect in the book, including swelling, lack of shoulder movement, burning sensations and eczema. Because of the swelling, doctors told her the reconstruction of her left breast would require another three to four operations.
Since then, she has lived with worry about a recurrence of breast cancer, and has found severalnon-cancerous lumps in her right breast. She's become a volunteer at Marin Breast Cancer Action, a patient advocacy group. Now she's considering a preventive mastectomy to remove her right breast. "In hindsight," she said, "I wish I had taken the damn things off."
Doctors say the decision to remove one's breasts is so personal and so individual that they cannot offer any pat guidelines.
But they do expect preventive mastectomies to become most used by women like Helen Jaffe, whohave learned they carry a genetic mutation, or Gaynell Rogers, who have had cancer diagnosed in one breast but not the other.
Insurance questions
There are, however, still complex issues that prevent many women from getting tested for the genetic mutation. While doctors say they keep test results out of a woman's medical records, it may be difficult for a woman to keep the information confidential.
For example, an insurance company might require a blood test for the mutation before it would agree to pay for the surgery. Helen Jaffe used her genetic risk as proof she needed the costly operation. Even so, the insurer later decided the mutation did not constitute a preexisting condition for breast cancer, and they're battling over who will pay.
"There are ethical, legal and insurance issues. We don't have legislation banning discrimination on genetics," warned Kutner. In any case, Dr. Borgen of Memorial Sloan-Kettering Cancer Center said preventive mastectomies shouldn't be accepted as a long-term solution for women. "We don't want to build prevention on surgery," said Borgen. "It's the wrong thing to do. The (Mayo Clinic) study puts an exclamation point on the need to find a better way to prevent breast cancer.
That's the take-home message."