Wow! Hard to believe it’s been a week since I’ve made this thing public… and to be totally honest, it’s taken me this long to process the massive outpouring of support I’ve received. Like WOW I knew you were all amazing, but to see it written in your comments, to watch the blog hits rise, and to feel the love as so many of you reached out to me literally left me speechless. As you can imagine it wasn’t easy, but I definitely feel like I made the right decision to start this blog and am so glad to have so many wonderful people behind me.
So this time in two weeks I imagine I’ll be a lovely bundle of nerves awaiting the big breast surgeon appointment, but for now I shall enjoy my bliss… I just got back from a wonderful weekend getaway to Fredericksburg (down in the Hill Country for you non-Texans!) with one of my best friends. A nice long drive allowed for much talking about many topics, but “the new boobs” for sure – having fellow “medical” friends who see things from a similar perspective is something I will never take for granted! We traveled down Wine Road 290 and gathered some lovely drinkable souvenirs along the way. It was perfectly relaxing and downright fun – a fabulous way to end the birthday festivities!
I figured until I have actual “news” to report, I’d start with some basics… and what better to start with than the title of my blog. So what exactly IS a previvor anyway? I think it’s a pretty nifty term with a cool story. From the FORCE website…
“Cancer previvors” are individuals who are survivors of a predisposition to cancer but who haven’t had the disease. This group includes people who carry a hereditary mutation, a family history of cancer, or some other predisposing factor. The cancer previvor term evolved from a challenge on the FORCE main message board by Jordan, a website regular, who posted, “I need a label!” As a result, the term cancer previvor was chosen to identify those living with risk. The term specifically applies to the portion of our community which has its own unique needs and concerns separate from the general population, but different from those already diagnosed with cancer.
The medical community uses the term “unaffected carrier” to describe those who have not had cancer but have a BRCA or other cancer-predisposing mutation. The term applies from a medical perspective, but doesn’t capture the experience of those who face an increased risk for cancer and the need to make medical management decisions. Although cancer previvors face some of the same fears as cancer survivors, undergoing similar tests and confronting similar medical management issues, they face a unique set of emotional, medical, and privacy concerns.”
I just love that… “I need a label!” It’s so true. No I haven’t had cancer, and no I don’t want to take away anything from those that have – they are their own particular breed with their own stories that deserve so much respect. But I DO have something that deserves recognition, both from those in the medical field and those not, and previvor is certainly way more fun than “unaffected carrier” if I do say so myself! So that’s my “label,” per se, going into all of this – not to be defined by it, but to help redefine it myself… by “Previving and Thriving.” It’s amazing how it’s become commonplace – anyone who knows anything about BRCA mutations seems to know the term! It takes the mystery out of “well… I never had cancer… but… I’m not at ‘normal’ risk either…”
Anyhow, certainly not my most exciting post ever, but one that deserves writing anyway! Up next… the most common question I’ve been asked… how did I come to this decision of prophylactic surgery versus other options. Stay tuned – and have a fabulous week!