More than an ounce of prevention

More than an ounce of pr

September 26, 2009 04:28

Sarah is a young, healthy woman but she can't stop thinking about breast cancer. She recently moved from the US to Jerusalem and has developed a strong network of friends here. She has growing daughters who demand her constant attention and make her laugh every day. Her mammograms consistently come back clean. But under it all, cancer is always on her mind. Like most women in their thirties, Sarah (not her real name) once only thought about breast cancer when she got her yearly physicals. Several years ago a relative was diagnosed with the disease, but even then Sarah did not think this necessarily impacted her own health. Then, a second relative was diagnosed with cancer and tested positive for a mutation to the BRCA1 and BRCA2 genes that puts carriers at a significantly elevated risk for developing breast and ovarian cancers. A doctor told Sarah she should get tested as well. "I didn't know anything about it. Even when I heard, I was sure I didn't have the gene," she recalls. When the results came back positive, the usually upbeat woman says her whole world fell apart. "It is the psychology of waking up every morning and wondering if this is the day I get cancer," Sarah says. There are so many facets to her fear, it is impossible to recount them all, but one emerges above the rest. "I have little kids and I need to raise them," she says, her warm, almost husky voice breaking for the first time. After finding a benign growth last November, Sarah elected to undergo what is formally called a bilateral prophylactic mastectomy. In lay terms this meant she would have all her breast tissue removed, even though no actual cancer cells have been detected. In most cases, the breasts are then reconstructed using silicone implants or excess tissue from elsewhere in the body. The concept is simple: no breasts, no breast cancer - or at least a much lower risk of it. To anyone who has not lived life as the carrier of a BRCA mutation, Sarah's choice may seem dramatic, even extreme. It is a brave and difficult option that is certainly not right for every woman; but a growing group of Jerusalem women like her are determining that it is the only way for them not to live in fear. One in 40 Ashkenazi Jewish women carries a mutation in either the BRCA1 or BRCA2 genes, according to most studies. This is more than five times that of the general American population, according to the National Cancer Institute of America. In Israel, there are an estimated 30,000 male or female carriers of the gene, yet only about 2,500 have been identified, according to Dr. Eitan Friedman, the head of the Oncogenetics Unit at the Sheba Medical Center in Tel Hashomer. The test is generally performed at the advice of a genetic counselor for people with a strong family history of certain cancers; but in Israel this may be more difficult because many older relatives died in the Holocaust. As a result, the test is now also performed on women who develop cancer before the age of 50, for women who develop bilateral breast cancer and for all relatives of ovarian cancer patients. BRCA1 and BRCA2 were discovered in the early 1990s, and tests for different mutations started becoming available in the mid-1990s. Testing has been done in Israel since 1995, though it did not become widespread until the last five to six years, according to Friedman. It is a simple blood test, but for women who test positive it provides stark insight into the future. The chances carriers will develop breast cancer in their lifetimes are 70 percent to 80%. For ovarian cancer, which is more lethal because it is less easily detected, the rate is also ominously high, at 50%, or 25 times greater than the risk in most women. Many women who test positive refer to their breasts as "ticking time bombs." There are currently two alternatives for women who discover they are carriers of BRCA1 or BRCA2 mutations. One is constant, careful monitoring. For breast cancer this means annual mammograms and MRIs, as well as clinical breast exams. There are no reliable tests for early detection of ovarian cancer, but women undergo a regular pelvic ultrasound and blood tests for tumor markers, according to Dr. Pnina Mor, a nurse and the coordinator of the NOGA clinic for women who are BRCA mutation carriers at Shaare Zedek Medical Center in Jerusalem. In addition, there is an array of lifestyle choices, such as exercise and diet, that may help reduce a woman's risk. "We encourage a woman to see how much she can do instead of just sitting around and waiting for the other shoe to fall," says Dr. Diana Flescher, the medical director of B'shvileych, a woman-to-woman health promotion center that caters to religious women in the Jerusalem area. MONITORING WILL not prevent a woman from developing cancer. It simply increases the chances that the disease will be caught early enough to save her life. For many women, this wait-and-see approach is the right choice, especially when they are young and the consequences of removing their ovaries or breasts are more marked. Unless a woman has a family history of early-onset ovarian cancer, doctors do not recommend she have her ovaries removed until she is past childbearing years. Generally this means 35, but in Jerusalem, where many religious women continue having children later, this may be delayed until their 40s, according to Mor. The decision to undergo a bilateral prophylactic mastectomy is much more difficult, and personal. A woman must weigh how important her breasts are to her aesthetically and sexually, against her ability to be vigilant about monitoring and her willingness to live with the ongoing risk of developing cancer. Because women are now taking the test as early as 25, this can be a heart-wrenching decision, raising questions about their ability to find a partner and have and breastfeed children. "We are very much in a gray area" when deciding between surveillance and preventive surgery, Flescher notes. "We have to explore with each woman what her approach is. Some women say, 'I want to do everything possible.' Other women say, 'I'm a carrier, but my mother is still healthy, so maybe I'll wait. Or 'I'm very young and I'm not finished having my family yet. I need to wait,'" she says. "For me it was a question of when, not if [I would get cancer]," says Debra Nussbaum Stepen, who tested positive for a mutation of her BRCA2 gene. For the energetic Jerusalem woman, who watched her beloved father suffer multiple bouts with cancer before dying at age 77, a preventive mastectomy was the only way for her to feel she had control over her health. Studies show that women who have their breasts completely removed reduce their lifetime chance of developing cancer to roughly 7% to 8%, below the average risk of 13% in the general population. Still, preventive mastectomies are remarkably rare in Israel, according to Friedman. Israel finishes "at the bottom of the pile" worldwide, Friedman notes, citing a 2008 study published in the International Journal of Cancer. Four percent of healthy Israeli women who are BRCA carriers choose to remove their breasts, as opposed to the world average of 18%. In some Western countries the number is as high as 70% or 80%, says Friedman. To put this in real-life perspective, of the over 350 women who have visited Mor's clinic at Shaare Zedek since 2007, only 11 have elected to have bilateral mastectomy, and 72 have had their ovaries removed. Experts like Friedman and Mor, as well as women recalling their own experience, say two factors are driving this trend. First they point to a culture in Israel that is more macho. This makes breasts an important symbol of sexuality and fertility. The second issue, which is easier to identify and just starting to be addressed, is the advice women receive from their doctors. "You're a young healthy woman, why would you even think about doing this?" many women recount their doctors saying. The attitude stems from the fact that some doctors are not always up on the latest medical literature regarding recommendations for preventive surgery, as well as a discomfort, especially among male physicians, with advising women to remove their breasts, Friedman says. The point is not to get the number of preventive mastectomies up, experts emphasize. It is to ensure that women make choices that are free and informed. A woman's relationship to her body is very individual, and the decision she makes cannot be entirely dictated by science, they note. For most women with BRCA1 or BRCA2 mutations, a protracted debate about statistics ultimately misses the point anyway. The future is something that is ultimately unknowable, no matter how many tests they do or scientific studies they read. Instead, the decision for them is about the present and being able to live their lives free of fear. Sarah had the double mastectomy shortly after Pessah. When asked before the surgery what she imagined her life would be like post-surgery, Sarah deadpanned, "It will look like me wearing porno tank tops with no bra." Then, more seriously, "I feel like it will be calmer, a little bit of a weight off." When she woke up, Sarah says she felt relieved. She was able to wear a sports bra, with no bandages. "I looked immediately, at least from the outside, more or less the same." Still, after the surgery Sarah did have a dark period when five weeks later she developed an infection. "I thought that it had gone so smoothly and was more or less over, that I looked good, and then there was this horrible setback. There were days in the hospital that I couldn't stop crying," she recalls. Sarah's infection also forced her to share her decision to have the surgery with many friends and relatives, from whom it had been a carefully guarded secret. "I found that when I told people, I spent a lot of time elaborating on the fear I had [when she found a lump], elaborating on the statistics and explaining how BRCA cancers are very aggressive cancers… Perhaps in addition to wanting to share this, it is also that I need to convince myself over and over again that it was the right decision." For many women, even their husbands or family members who are themselves cancer survivors initially have difficulty understanding the choice to have their breasts removed. "I had read all the stuff first and I said, 'I'm doing it." And [my husband] said, 'Oh, you're crazy. You can't do it.' I said, 'Here's the information. You read it'.... My husband is a dentist, he is a scientist. He went through all the literature, and then he said it's a no-brainer," says Nussbaum Stepen. Even with her husband's full support, Nussbaum Stepen says it was still a decision she ultimately had to make alone. "He's not in this body." This sense of isolation is one of the major issues faced by Israeli women who decide to undergo a prophylactic mastectomy, according to Lisa Cohen, who a year ago founded a support organization called Bracha for carriers. "When women come to me and I say 'I can put you in touch with 10 women who have done it, your age and in your area,' once they see other people have done it, it becomes more acceptable." Bracha, which references the colloquial pronunciation of the gene and the Hebrew word for blessing, is a nationwide support network that offers a Web site, an Internet forum and conferences for women who are carriers. Women with the BRCA mutation also struggle to find support because they do not fit within conventional cancer organizations. Even though they are considering undergoing a major, life-altering operation, they are not technically sick. It is a feeling Cohen learned firsthand when she contemplated a double mastectomy and oopherectomy as a healthy 37-year-old woman. "Cancer organizations don't know what to do when someone with the BRCA gene phones. When I first got the result, that's what I did - I found a cancer organization and called them and said, 'I've got this result that says I'm going to get cancer.' And they said, 'Oh well, dear, you wait until you get it and then come back to us.' I was in such shock. I said, 'I don't want to get cancer. I don't want to have to come back.'" Nussbaum Stepen, who is Bracha's Jerusalem coordinator, says there has been a dearth of support networks for Jerusalem women with BRCA but that this is starting to change. Nussbaum Stepen learned she was BRCA positive in the United States and had her surgery there before moving to Israel to be closer to her family. She says it was a change for her to come from America, where she had an incredible network of support, to Israel where prophylactic surgery was still on the fringes of social discussion. She sees it, however, as just another challenge. "I knew Lisa and I were going to change that. And we have. We really have. At least now in Israel it's starting to be talked about, where it wasn't before." Nussbaum Stepen, who is haredi, says religious women in Jerusalem who have tested positive for a BRCA mutation face challenges finding a support network This is echoed by Chaya Heller, the director of Beit Natan, a Jerusalem-based organization that provides cancer support to religious women. "Information about breast cancer has always been slow to disseminate into the religious community," Heller says. Haredi women are busy with large families and have less ready access to mainstream media and the Internet. In addition, testing for BRCA invokes fear about the ability of their children to find shidduchim, she adds. "For many years there was a wall of silence, but it is not so hidden anymore." Now about 10% of the calls Beit Natan receives to its hot line are about BRCA. At the B'shvilaych clinic for religious women, interest has also been rising. "Many times when I go to a lecture about preventive care, I ask if anyone has ever heard of BRCA, and not a single hand is raised," Flescher says. "But recently - and I mean just within the last year - I have women calling me to tell me they have tested positive for BRCA and want to know about their care options. I never had that before." "I hope [growing awareness] will help religious women to understand, to not be so fearful," Heller adds. "There is a window for life being presented. It is pikuah nefesh [life-saving]. It is a mitzva." Though Sarah maintains that the decision to undergo a prophylactic mastectomy is personal and not for everyone, she is upbeat once again. "Having the surgery has definitely helped eliminate my fears. The bottom line is that I no longer wake up every morning thinking I am going to die of breast cancer."

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