New book on ‘previvors’ helps women gauge
their risks and sort through prevention options.
Mayde Wiener did not have breast cancer. She did not even have a mutation that would suggest a higher risk of cancer. Yet five years ago, at the age of 45, she made what seems like a counterintuitive — even radical — decision, one that now seems to be backed up by science.
Although Wiener tested negative for BRCA mutations, which lead to increased risk of the disease, her mother had fought breast cancer in decades prior. As a health care professional married to a radiologist, Wiener began to look for other signs — not just family history — that she might be prone to breast cancer. She insisted on an MRI even though she appeared healthy, and the test found markers in her breasts that indicated that cancer development seemed likely.
It was then that she took action — she had her breasts removed. The surgery spurred her activism on the issue, as she began to enlighten her friends, non-Jewish and otherwise, about the risks of breast cancer and potential modes of prevention.
Looking back over her ordeal, Wiener told The Jewish Week in an interview from her home in Highland Beach, Fla. “The cloud has lifted. I don’t have any anxiety. I just feel, I’m over it.”
Wiener is one of five women profiled in the new book “Previvors: Facing the Breast Cancer Gene and Making Life-Changing Decisions” by Dina Roth Port (Penguin Books). The book, released this month to coincide with Breast Cancer Awareness Month, documents the journeys of five friends (four of whom are Jewish) who chose to take precautionary health measures, including mastectomies, some due to their high chances of developing breast cancer later in life.
The book appears a month after a new study indicated that women who had high risks for breast cancer and had pre-emptive prophylactic surgeries developed the disease in drastically smaller numbers. The findings were published in the Sept. 1 issue of the Journal of the American Medical Association.
“We published a similar study eight years ago at Sloan-Kettering based on our experience,” said Dr. Kenneth Offit, chief of the Clinical Genetics Service at Memorial Sloan-Kettering Cancer Center in a recent interview with NPR. “And at that time, people said that the surgery options were too drastic. Now, we have this report today from 20 centers, and this confirms powerfully that genetic testing as well as surgery together are a powerful strategy to prevent breast and ovarian cancer.”
Breast cancer kills hundreds of thousands of women (and some men) in the world every year, including 40,000 in the United States. However, unlike many other cancers, there are several mechanisms for predicting its occurrence, such as family history and BRCA mutations.
Every man and woman has two sets of two BRCA genes, and when a gene mutates, the odds of developing breast cancer greatly increase. Ashkenazi Jews have a 10 times greater chance of carrying either mutated BRCA gene than the general population, and therefore have higher occurrences of breast cancer as a group. In addition, males from families with histories of breast or ovarian cancer may be more likely to develop prostate cancer.
For those who have tested positive for BRCA mutations, there are several options for the next course of action. This includes a prophylactic mastectomy, the removal of the breasts.
Although the new study may convince some women to consider taking measures before they develop cancer, for others it reinforces decisions they made long ago.
“It’s further validation of what experts and doctors have believed — that a mastectomy is the one option that will most dramatically lower the risks for breast cancer,” says Roth Port. “It doesn’t mean it’s the right decision for every woman at high risk ... but it is a viable and most effective option.”
The book uses the stories of the five women, together with interviews with more than 70 health care professionals, in a wide-ranging discussion of breast cancer. And it discusses actions that can be taken before developing the disease.
Roth Port claims that a prophylactic mastectomy lowers the risk of later developing breast cancer by 90 percent, but the book outlines other scenarios as well: from the decision to be tested for mutations at all to options for breast reconstruction (which have improved dramatically in recent years).
“Surgery is not the answer for everyone,” Wiener explains. “There are many options out there.”
The book covers both the technical and emotional aspects of preventing breast cancer. The five women both discuss the advantages and disadvantages to their decisions.
In the book, Wiener wonders before her surgery, “Will I feel whole again? Will I feel normal?” Suzanne Citere and Amy Rosenthal recount fighting with insurance companies and the ensuing marital stress. Rori Clark explains in the book, “Ever since my surgery, I have felt one hundred times better in my body.”
“The reconstruction procedure is just remarkable,” declares Wiener. “The only thing we lost was our risk.”
Along with the book and website (Previvors.com), “Previvors” also has a free iPhone application. Users can take a seven-question quiz (one question asks if one is an Ashkenazi Jew) to explore if they are at increased risk for breast cancer. The app will make suggestions for the next course of action, such as getting a mammogram.
“In any Jewish community you’re hard pressed to find someone who hasn’t been touched by the disease,” explains Roth Port. “It’s very prevalent among Jewish people, and it’s something they need to know.”
Wiener often tells Jewish and non-Jewish acquaintances alike that they need to be aware of their risks. In addition to being tested for BRCA mutations, “We urge all women to know their family history as well.”
“Women fear breast cancer more than any other disease,” says Roth Port, “But we don’t need to anymore. ... We can take charge of our health in a way previous generations never could. We have to protect ourselves.”
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