What it means to Previve (Thoughts on National Previvors Day)

What does it mean to previve something? It doesn’t, as many people assume, mean to pre-survive. That’s linguistically impossible. To previve means to survive a predisposition. In other words, to previve is to acknowledge a likelihood and take steps to avoid it. Women who are at high risk for developing breast and ovarian cancers are called previvors, not because we’re pre-surviving cancer, but we are surviving despite a predisposition to developing it. A women who undergoes years of intense surveillance and never develops cancers is a previvor. A woman, who, like me, chooses to have preventative surgery, is a previvor. A man who carries the genetic mutation but never develops any disease is a previvor.

For some, this concept is offensive. They say we’re making a big deal out of nothing. They say that anyone can be considered a previvor of something. For instance, I’m a previvor of the hangover I’m likely to have tomorrow morning or a previvor of the sore knee I’ll have after I hit the treadmill later. But there is a key difference: I can abstain from white wine and avoid a hangover, and I can skip the gym and my knee won’t hurt. But unfortunately, there’s little I can do about my predisposition to breast and ovarian cancer. There is no magic herb, there is no amount of yoga, there is no incantation that I can recite to ensure that, despite my odds, I will be spared.

So I, like many previvors, took measures into my own hands. I had preventative surgery. Which is another controversy. For whatever reason, when it comes to preventative medicine (and prophylactic surgery), people are squeamish. Why remove healthy body parts? Why have surgery before you need to? They forget that this is common practice in other areas of medicine. Wisdom teeth? Dentists recommend they be removed before they cause problems. Suspicious mole? Don’t wait for it to turn into a problem; get it removed. Feeling a cold coming on? Drink OJ. Intellectually, I understand there is a big disconnect between molars and mammaries, but no one would suggest I wait until my mouth is infected to remove my wisdom teeth, so why should I have to wait for cancer to remove my breasts?

Being a previvor means I have a different perspective on things. Being a previvor means I have to confront possibilities and make choices. Being a previvor is hard.

All of these thoughts are occasioned by the calendar. Today is the first ever National Previvors Day. While there are a lot of strong feelings out there about the term “previvor,” in the BRCA community and beyond, I’m very glad to have a day that recognizes me and my particular circumstance. Because, and I’ve argued this from the beginning, it doesn’t so much matter to me what the label is so much as that we have one. Having a BRCA mutation, for better or worse, makes us different – we face increased surveillance, are urged to have parts of our body removed, and must deal with the emotional consequences of making choices based on tolerance for risk and fear of the unknown. We are an odd bunch, and sure, we’ve elected to give ourselves an odd name, but at least we have coherence. The most important step in any movement (and I think the move to designate a National Hereditary Breast and Ovarian Cancer awareness week as well as a National Previvor Day seems to be the first baby steps of a recognition and education drive) is unity. We are something. We are different. We are previvors. Our plight is real. Our choices are hard. But despite this, we persevere. To all my fellow mutants, happy day.

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.

Things I Wish I Had Time to Blog About

I haven't had much time to blog lately, though my thoughts are never far from boobs, BRCA, and all the other booshit that comes with it. More on that, I hope, soon. But, for the moment, I thought I'd make a post of things I wish I had time to properly write about.

1) A week of awareness.
Earlier this month, the US House of Representatives passed a resolution to designate the last week of September as National Hereditary Breast and Ovarian Cancer Week and the last Wednesday of the month as National Previvor Day. BRCA mutants now join the ranks of other causes and constituencies that have seven-day periods of commemoration, such as Home Care Aide Week, Radiologic Technology Week, and National Forest Products Week (this information from this useful site dedicated to demystifying which days throughout the year are dedicated to a particular cause.) I hope we do a better job of getting out the word than the Radiologic Technologists and Forest Producers because I have no particular awareness of those causes.

Much more information about HBOC week and National Previvor Day (which will be celebrated next Wednesday, September 29) can be found on Representative Debbie Wasserman Schultz's page and, of course, at FORCE. Download this poster, too. (On another note, could FORCE download a decent graphic designer? I mean, come on... My very first reaction when my genetic counselor handed me their brochure when I got my BRCA results was, "They need better marketing materials." I guess I'm a marketer first, a mutant second.)

2) BRCA positive? There's an app for that.
The Situation's got one. And now mutants do, too. Here's the spiel: "The Previvors iPhone app provides information and an interactive quiz that we intend to help raise hereditary breast and ovarian cancer (HBOC) awareness. Previvors are people who don't have cancer, but who are at a high risk for developing it. In honor of Breast Cancer Awareness Month, we intend to educate the millions of previvors about the common risk factors related to HBOC. The app provides the user with access to contact information for doctors, other healthcare providers and mammography facilities as a convenience to help them take control of their breast health. Users will also have access to other information sources and a newsletter relating to our new book, Previvors: Facing the Breast Cancer Gene and Making Life-Changing Decision." Download the app here.

3) See world? I wasn't crazy.
Last month, during yet another tropical vacation (I treat myself, and my new rack, quite well, yes), the BRCA world was riveted by this results of this study, which confirmed, as this article says, the "benefits of prophylactic mastectomy and salpingo-oophorectomy in women with BRCA1 and BRCA2 mutations. Women who underwent the prophylactic surgery had a greatly reduced risk for breast or ovarian cancer and a reduction in cancer-related mortality." I was drunk on good rum when this news broke, but if I had known, I would have raised my daiquiri to all the ladies who make sacrifices so that, well, we can enjoy tropical vacations with delicious daiquiris in good health for many years to come.