The following blog was written by author and FORCE member Amy Boesky, whose inspiring, poignant, and eloquent memoire, What we Have chronicles her family ‘s battle with hereditary cancer. Her highly-acclaimed book resonates with so many in our community.
What we Need…More Research
by Amy Boesky, PhD
The word research is both a noun and a verb. It comes from the middle French word rechercher, which means “to go about seeking.” Sue Friedman has spoken eloquently about the need to establish a research fund for the BRCA community. The importance of this message came home to me last spring, when I was asked to speak on risk-perception in members of high-risk breast and ovarian cancer families. I was lucky enough to hear Dr. Judy Garber from the Dana Farber speak at the same event. At present, the best option for BRCA-positive women awaiting (or delaying) mastectomies is surveillance. Dr. Garber described a new trial using low doses of PARP inhibitors in the hopes of preventing tumor growth. If the trial succeeds, women with BRCA mutations may have an effective treatment allowing them to delay surgery while reducing cancer risk.
Coming from a BRCA1 family, I had preventative surgeries in my thirties, but I want my daughters–in their late teens now–to have more options than I did. I find especially heartening the idea that affected women in their 20s and 30s may benefit from ongoing research protocols.
In May, I visited a lab at the Dana Farber that researches ovarian tumors–many of which originate in the fallopian tubes, not the ovaries themselves. The director of the lab told me about a Canadian trial that will follow young, high-risk women undergoing surgical removal of their fallopian tubes while leaving their ovaries intact. Trials like this could allow affected women to keep their ovaries longer, a critical option for many young BRCA-positive women who hope to have children.
Unfortunately, too few studies like these are underway. As a recent issue of the Journal of the NCI noted, SERM trials (analyzing the benefits of selective estrogen receptor modulators, such as tamoxifen, in preventing tumor growth) “have not included many BRCA carriers.”
We need more research. The larger breast-cancer community has been exemplary in terms of advocacy and fundraising, but we’re not all equally at risk. The BRCA community shoulders higher risk of disease while receiving considerably lower funding for its study and treatment. We need real dollars to support real research to prevent and treat very real risk. We need to get busy, to “go about seeking” answers to all the questions we still face unanswered.
Recently, I had a conversation with a friend who’d read the book I wrote about my family’s experience with BRCA1. Out of 4 women in the two generations before me, 3 died in their 40s (of ovarian cancer). The last, my mother, made it to 59 before succumbing to breast cancer. The friend said she liked my book. “Honestly, though,” she said, gazing quizzically at me, “doesn’t everyone gets something? Aren’t we really all at risk?
I wasn’t sure how to answer. True, we’re all mortal. Everyone gets something—sometime. But we’re not all equally at risk. There’s nothing wrong with solidarity and marches and shopping mall events when it comes to raising awareness about breast cancer. Ultimately, research on the larger breast cancer community will benefit those of us with BRCA mutations, and vice-versa. But that doesn’t change the fact that BRCA positive individuals carry much greater risk, and require focused scientific attention on every aspect of testing, prevention, diagnosis and cure.
The HBOC community needs our own dedicated research fund. It’s time to get serious about seeking information, not hiding from it. As a community, we have more options than our mothers did. Let’s do what we can to make sure our daughters can say the same.
Visit the FORCE website to learn more about or support our Hereditary Cancer Research Fund.