Carpe diem--Latin for "seize the day." This grab-life-while-you-can ethos has particular importance for those of us whose families carry genetic mutations for breast and ovarian cancers. Time-- precious to all--feels especially fleeting when you grow up in the shadow of disease, when most of your ancestors die young.
Now, there's a way to seize a day and make it matter for families like mine. Congresswoman Debbie Wasserman Schultz (D) of Florida has introduced HR#1522-- proposed legislation to establish the last week of September each year as Hereditary Breast and Ovarian Cancer week. If Schultz is able to gain enough support--she needs 100 co-sponsors by August 2 to pass the resolution--Wednesday of this new week will become National Previvor's Day. (Previvors are people with a high predisposition for a condition or disease who do not yet have it, and may be trying hard to prevent that disease from occurring.)
Do we need really another "national this-or-that" week? Not to mention one more so-and-so's Day?
The answer is a resounding yes.
Since 1994, when the BRCA1 and 2 mutations were first discovered and the so-called "breast cancer genes" made headlines, communities have come together to explore the personal, ethical and political complexities that are part of this new frontier. As with any new challenge, there's strength in numbers. Advocacy groups such as FORCE--Facing Our Risk of Cancer Empowered--have worked tirelessly to educate people about the BRCA mutations. But more resources are needed. People have urgent questions: If I come from a family with a high rate of breast or ovarian cancer occurrences, should I be tested for BRCA? What should I do if I get a positive result? Is surgery the best--or only--option? What if I don't have children yet? If I'm a male, what does a positive result mean for me?
Years ago, most of us from high-risk families wouldn't have known to ask, let alone how to answer these questions. We wouldn't have known men can get breast cancer (it's rare, but it can happen) or that the BRCA mutations can increase the likelihood of prostate cancers in male patients, many of them highly treatable if caught early.
We wouldn't have known there are alternatives to surgery for women who test positive. Even alternatives to testing.
Or that there are critical debates to be had about the BRCA genes, research studies to be run. Questions to consider, both at the individual and collective levels.
But what about those who are not yet asking questions? There are thousands of individuals who have no idea (yet) that they are BRCA previvors. People who could be taking important steps to prevent disease for themselves and their children, but don't yet know how. A week dedicated to HBOC would make a huge difference here.
The advances in the science behind hereditary breast and ovarian cancers have been impressive. But there is still a long way to go.
I come from a BRCA1 family, and I consider myself lucky.
The mutation in my family is a matrilineal defect, which--while tragic--also means that disease has been highly visible. It passed from my grandmother and her sister to my mother and her only cousin (a woman), then down to one of my cousins, and--possibly-- to me (I haven't been tested yet, though I have had preventative surgery).
In one sense, this has been the worst-case scenario: my grandmother, her sister, my mother and my mother's cousin all died young--three out of the four of them in their forties. But the high visibility of their disease--all but my mother had ovarian cancer--made it evident decades ago that cancer "runs" in our family. My sisters and I knew we had to be proactive. We had years to get used to the idea that we would need preventative surgery. Before 35, if possible. This horizon of risk shaped the way we lived our lives. It helped us protect our health.
Carpe diem--seize the day. That phrase sounded in our lives like a bell, warning us to hurry. Would I have chosen it on purpose, that pressure? Absolutely not--but by 35, I was ready to do what I felt I had to. I had two healthy daughters, and I was prepared to have surgery to help protect my health--because I'd known far enough in advance to plan. That's my story. But thousands of women and men have inherited this mutation and don't know it yet. Without education and screening, we won't reach them in time.
I've had tough choices to make, but I've been lucky to have health insurance, excellent doctors, and good counsel. Now, I want these same things for my daughters, my students, and for the wider community.
If you're reading this piece, take five minutes and sit down to email your representative in Congress. Tell him or her you want their support for HR #1522. Tell them this matters.
Give us HBOC week for education and outreach, for education, for fundraising, for unity, for creating a collective voice. Give us National Previvor's Day--one day to seize.
We will use it well.
--Amy Boesky, Associate Professor of English at Boston College, is author of What We Have, a memoir about her family's experience with BRCA1. See her website at www.whatwehave.org