By Pamela Grossman
Friday, September 21, 2012
The last week of September is National Hereditary Breast and Ovarian Cancer Week. Science has identified gene mutations that place women at higher risk of breast and ovarian cancer--but to me, this information alone is not nearly enough.
Credit: Paul Falardeau/pfala on Flickr, under Creative Commons (CC BY 2.0).
(WOMENSENEWS)-- In a few days, I will pick up the results of genetic testing that I was strongly urged to have done. This will determine whether I carry a gene mutation that increases a woman's risk of developing breast and ovarian cancer--by a huge amount. If my test is positive, which is likely, I will almost certainly remove my ovaries at some point; and very possibly my breasts too, down the line.
I am no fan of preventive removal of healthy body parts, especially when those parts heavily influence quality of life.
I said as much to the high-risk oncologist I sought out 10 years ago, when I learned through a relative's test results that one such mutation--known as BRCA2--is in my family.
Unfortunately, this information was not surprising. Ovarian cancer took the lives of my mom and her sister, at ages 51 and 48, respectively. The Dana Farber Cancer Institute tells us that 75 percent of ovarian cancers are diagnosed at later stages. Partly as a result of this, survival outcomes for the disease are poor, just as they were when my mother was diagnosed in 1979.
My doctor suggested regular ovarian screening--the scans are not highly reliable, but they do at least provide some information. However, eight years after we began the ovarian checks, I discovered a lump during a breast self-exam.
At age 40, as a vegetarian yoga-doer with an annoyingly healthy lifestyle (yes, thanks for asking, I do mind if you smoke), I was diagnosed with breast cancer.
Clearly, I should have been having breast screenings as well as ovarian screenings all along; the possibility of being a BRCA2 carrier put me at high risk for both cancers.
The doctor had made her screening recommendation based on my family history. If we could go back in time, I would ask more questions; she would expand on what she advised.
Suffice it to say for now, if you are a woman with an increased likelihood to be BRCA+ (whether or not you have been tested), ask your doctors about receiving both breast and ovarian screening, and find out what medical guidelines best apply to you.
The breast cancer I had was aggressive. We learned from a biopsy that it had already spread to two lymph nodes, which were palpable under my skin. I remember brushing my fingers over the nodes, after I'd learned what they meant. I have no words for that feeling.
I underwent chemotherapy before surgery; my doctors wanted to get a system-wide jump on the disease. That's when I learned that the chemo could very possibly put me into early, and permanent, menopause. I hadn't yet had children, wasn't sure that adoption agencies would look favorably on a cancer history and didn't have time to harvest eggs before chemo. I'd never imagined cancer making any decisions for me about having a family. Cue many, many tears.
I did the chemo. I was bald, I was tired and I was queasy. (This, though, was nothing like the horrific nausea my mom faced. Chemo is still miserable, but in anti-nausea medication there has been big progress). On some days I was scared, and on many days I was profoundly sad. I told friends I was a walking collection of qualities that had been rejected for the Seven Dwarves, like Dizzy, Weepy and (slightly) Pukey.
But finally, my surgery revealed that the chemo had worked and all but eliminated the cancer. Radiation and post-treatment "don't get cancer again" pills, targeted to the pathology of the disease I'd had, did the rest.
Here I am, several years out from my diagnosis, cancer-free and doing well (knock on every piece of wood). To my joy, I did not go into permanent menopause from chemo, and my thoughts again turned to harvesting eggs. (For a pregnancy I'll carry when I'm done with the preventive meds? For a surrogate to carry? Unclear; first things first.)
But you can't harvest eggs during or immediately after radiation and you can't harvest them while on the don't-get-cancer-again drugs. I've been waiting to arrive at "the right time" for harvesting, while also facing related complications that one of the don't-get-cancer drugs has caused (a long and aggravating story in itself).
Meanwhile, since my cancer diagnosis, my own genetic testing for BRCA has seemed unavoidable. I had originally chosen surveillance rather than testing because I knew I would not be willing to have preventive surgeries at that time; surveillance was the only other option. But my cancer diagnosis changed the picture. Assuming my results are positive, I'll be in intense and immediate negotiations with my doctors over my ovaries.
If I can't keep them forever--and, given the current ovarian cancer landscape, doing so would never be advised--I at least want to get some eggs from them first.
Did you know that a woman can carry a pregnancy, with implanted embryos, after her ovaries are removed? I didn't, until I saw a fellow-survivor friend do just that, giving birth to a healthy and beautiful son.
Lots of women, I hear, are grateful for the knowledge that BRCA testing brings; information is power, they figure. And that also seems to be the attitude that many clinicians expect of me.
Sorry to differ here, or to disappoint.
For me, the information does not feel empowering, given the medical state of things.
To begin with, no one knows yet how to fix BRCA mutations. Even so, the information would be of huge use if there were better early detection for ovarian cancer and if young women with dense breast tissue had more reliable breast-screening tools.
But none of this is the case, and therefore preventive removal of breasts and ovaries is the norm.
Far from feeling grateful for what the BRCA test will tell me, I feel more like the character who, at the end of Shirley Jackson's "The Lottery," learns that a revered town tradition in which she has been "chosen" is about to result in her death by stoning.
Her last words on the matter (or any matter): "It isn't fair. It isn't right." I know BRCA testing is supposed to help prolong life, not end it. But still, I feel, this whole process isn't right; and it's incredibly far from fair.
I want to live, and I'll do what I have to do. But the long life I hope to gain through my efforts will always include noisily advocating for better. Better detections, better treatments, a fix for BRCA--and while we're at it, a cure for cancer.
When I see those things come to pass, then, yes, I will indeed be grateful.
Pamela Grossman is a Brooklyn-based journalist. She does patient-advocacy work through the Young Survival Coalition and SHARE.
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