As I write about in my “Three Generations of Breast Cancer Survivors” story, the experience of watching one female family member after another confront repeated diagnoses of breast cancer established a major and dark cloud of fear over my siblings and I. I had to push hard and long to convince all 6 of my siblings to undergo genetic testing for the breast cancer gene mutations, BRCA-1 and BRCA-2. When we received confirmation that 5 out of 7 of us were BRCA-2 carriers, I felt absolutely doomed and just could not live with that feeling. While potentially hard to understand from someone else’s shoes, the decision to have healthy breasts and ovaries removed was not a hard decision for me. Since then, as medical science consistently does, the evidence regarding the effectiveness of having prophylactic mastectomies and oopherectomies for reducing the risk of breast and ovarian cancer seems to blow with the wind.

Once I tested positive for BRCA-2, I was told I had an 85 percent lifetime chance of developing breast cancer. Women who test positive for the BRCA-1 or BRCA-2 mutations generally have three options for managing their risk: body-altering surgery, preventive chemotherapy, or a stepped-up screening regimen that includes frequent mammograms. Screening techniques are less effective for ovarian cancer than for breast cancer, and doctors usually advocate salpingo-oophorectomy (removal of ovaries and fallopian tube) if a woman has completed her family.

In February 2008, the Journal of the American Medical Association suggested that women who carry a BRCA mutation are typically told that they have a 60 to 80 percent risk of developing breast cancer by age 70, but that a then recent study appearing in the Journal of the American Medical Association suggested that that figure might be incorrect, and that women with a BRCA mutation probably have a 36 to 52 percent risk of developing breast cancer by age 70, significantly lower than the 85 percent risk I was quoted. Why the discrepancy?

Researchers derived the 60-80 percent statistic from studies of families known to carry a BRCA mutation. In contrast, the new study was a population-based, case-control study that compared women who developed a second breast cancer in the opposite breast with women who had cancer in only one breast. The analysis revealed that although having a first-degree relative increased risk, the risk levels were not the same. Specifically, the researchers found that relatives of carriers who were diagnosed at age 35 or younger had a 52 percent chance of being diagnosed with breast cancer by age 70 and a 95 percent chance by age 80. In contrast, relatives of carriers who were diagnosed at age 45 or older had a 36 percent chance of being diagnosed with breast cancer by age 70 and a 44 percent chance by age 80. If you consider the fact that cancer diagnoses in women age 35 or younger are suspected to generally be attributable to genetic factors, whereas those in women over age 45 are not, the more nuanced study findings make sense.

As if this revision of medical statistics was not enough, the Journal of Clinical Oncology reported right around the same time that the benefits to BRCA2 carriers of ovary removal might not be as significant as previously thought. Here’s a Washington Post summary of that JCO report: [washingtonpost.com]

To be honest, the revised statistics were largely a moot point for me. My life had become a series of mammograms, MRIs, ultrasounds and biopsies. I made the decision to remove healthy breast tissue, as well as my ovaries, for my own peace of mind. The decision to have prophylactic surgery is personal, but I know it was the right choice for me. Nonetheless, the winds have again changed direction.

Now a study appearing in the Journal of the American Medical Association and reported about on CNN’s Health.com ([cnn.com]HEALTH/08/31/health.breast.ovary.removal/index.html?hpt=T2), is reportedly confirming that preventative mastectomy and ovary removal can slash the risk of cancer in women carrying the BRCA1 or BRCA2 gene mutations, and it suggests that surgery is more effective than rigorous screening at preventing future cancer. Researchers at 22 cancer centers in the U.S. and Europe followed nearly 2,500 women with BRCA gene mutations for about four years. None of the women who underwent preventive mastectomy developed breast cancer during the study, whereas 7 percent of the women who opted against the surgery did. (The women who did not have surgery were put on an intensive screening schedule.)

As always, in reading a synopsis of the study, I have lots of questions. Is four years really long enough to meaningfully determine the impacts of preventative surgery? Other statements like, “women who had an ovary and fallopian tube removed cut their risk of dying from ovarian and breast cancer by 79 percent and 56 percent, respectively,” and " The rates of fatal ovarian and breast cancer were lower in women who had the surgery" leave me with more questions than answers. I mean, not dying is good, but I opted for prophylactic surgeries in an effort to pass up my day of diagnosis. After all, it was the 85 percent lifetime chance of “developing” breast cancer that I wanted to address.

Again, while I cannot help but follow the changing winds of medical research into genetic cancers, I still know that for me, the alternative scenario of constant and intensive screening and the constant anxiety and fear that would have followed me like a permanent dark cloud was not living. It’s a very personal choice, one that I personally am alright with.