Tuesday, September 28, 2010

Thoughts on National Hereditary Breast and Ovarian Cancer Week, a guest blog, on Previvors.com

The lovely ladies behind the fabulous new book Previvors: Facing the Breast Cancer Gene and Making Life-Changing Decisions asked me to contribute a guest blog on my thoughts about National Hereditary Breast and Ovarian Cancer Month. The post can be found here (and while you are on the site, peek around and have a look at all the wonderful resources they've collected there -- the links section will be especially useful for women taking their first uncertain steps down the yellow shit road of BRCAdom) but I've also posted it, with permission, below.

Happy National HBOC Week!

Thoughts on National Hereditary Breast and Ovarian Cancer Week by guest blogger, Steph H

Sunday marks the beginning of National Hereditary Breast and Ovarian Cancer Week, seven days devoted to spreading awareness of hereditary cancers and the genetic mutations that cause them. This commemorative week is an important step forward in educating men and women about family history and cancer risk. And we need this week. After all, most people have never heard of BRCA mutations. How do I know that? Well, until two years ago, neither had I.

Growing up, I never feared breast cancer. That’s because, aside from my grandmother, who battled it twice in her seventies and triumphed both times, breast cancer didn’t seem like something that could happen to me. And my experience with our health care system seemed to confirm this. Whenever I’d go see a new doctor, he or she would dutifully take my family health history (healthy mom, healthy dad, grandmother with postmenopausal breast cancer) and determine that I had nothing out of the ordinary to be concerned about.

But I did have something to be concerned about, something no doctor ever took the time to see (and something, until about two years ago, I knew nothing about, either). Hidden in my seemingly unremarkable family history was inescapable truth: my family – not my immediate relatives but my second cousins and distant aunts – was plagued by cancer. In just three generations, fourteen members of my family have developed some form of cancer, and eight women have developed breast or ovarian cancer. Very few have been lucky enough to remain unaffected.

These cancers are caused by a genetic mutation. And it turned out, despite the fact that he remains healthy to this day, my father was a carrier. That meant I had a fifty percent chance of carrying it as well. And if I did, my risk for breast cancer, as I had been assured by so many doctors, wouldn’t be that of the average woman. Instead, I’d have a lifetime risk of developing breast cancer as high as 87%.

All of this, however, was totally new to me when I went through genetic counseling, submitted to a blood test, and learned, indeed, I, too, was BRCA2 positive. I had never heard of hereditary cancer or the BRCA gene. I felt alone, and I was terrified. Over time, I educated myself, met wonderful women just like me, and made difficult choices to reduce my risk of getting the deadly disease that so few of my relatives seemed to be able to escape. Last December, I chose to undergo a prophylactic bilateral mastectomy, which reduced my risk from all but certain to about one in thirty. Those are odds that, no matter the sacrifices I had to make, I’ll take any day.

But until it affected me, I didn’t know anyhing about hereditary breast cancer. That’s why I’m so passionate about National Hereditary Breast and Ovarian Cancer week. There are undoubtedly thousands of other women out there like me who have no idea they are at high risk for breast and ovarian cancer. It could be because, like me, they inherited a genetic mutation that “hid” itself in two generations of men; or it could be that their family doesn’t talk about “female cancers” or keep track of distant relatives.

Whatever the case, this week, I hope we can start a national conversation and get people talking about breast and ovarian cancer. After all, if my father hadn’t spoken to his cousins, if he hadn’t learned his risk so that his daughter might learn hers – and, of course, do something about it – not only would I not be writing this right now, I would still be completely ignorant of my risk and how hereditary cancer might affect me. I truly believe knowing my BRCA status saved my life; I can only hope this week saves many more.