PREVIVOR: A person who is not diagnosed with cancer, but has survived the predisposition, or higher risk, of cancer due to a genetic mutation and/or strong family history. After being armed with this information, a previvor can make informed choices prior to a cancer diagnosis.
There it is. That word that has become a part of my very being. The word that describes me so completely, yet it wasn't in my vocabulary a few years ago.
When I first started this crazy, mixed up journey I had gone onto another message board. I won't say the name of it, because it is a very good message board, for the right person. It's more geared towards breast cancer survivors, so needless to say me and my questions about having a PBM were not readily welcome. I had posted a few times and had a warm reception when I was going through testing and biopsies and not knowing the results. However, when it became clear that I was not gettng the dreaded diagnosis, and was leaning towards a PBM I began to get a little bit more negative feedback. At one point I did pose the question as to whether people acknowledged there was a group of people in my situation. Not having breast cancer, but dealing with it nonetheless. I felt like my struggle and sarifice needed to be acknowledged! At which point I got a reply that in no uncertain terms told me I had no right to consider myself in the same boat with breast cancer survivors. The poster also pointed out that I'd perhaps be a better fit at the FORCE message board and then told me "I believe you people are labeled previvors" Someone else recommended the book Previvors (which I'm very thankful that I got!). Needless to say it was my last post on the particular message board.
Since my surgery, people who only casually know me or hear of my situation fall into one of two categories:
1- Oh you had a mastectomy? How long has it been since you've finished chemo? (I tell them I haven't had chemo. Then still not getting it they say---) Well did they catch the cancer in time?? (finally I tell them I didn't have breast cancer, which is why I didn't have chemo) **complete silence** Well good for you! (And then they promptly leave)
OR (and the majority of people)
2- So you had a mastectomy? Did you have breast cancer? No...well were you at higher risk?? Good for you! That's such an amazing decision and I know I'd do the same thing.
Most...really most.. people are very supportive of my decision. Whether or not they'd do it themselves (I've had people tell me there's no way they'd do it themselves) they are very supportive and respectful of my decision.
Even so, I am not a breast cancer survivor. I repeat- I AM NOT A BREAST CANCER SURVIVOR. I do not want people to think I'm one. I don't deserve that title and I have nothing but awe and respect for the breast cancer survivors out there. However, I feel like that my struggle, my sacrifice, my journey DESERVES to be recognized. I may not be a breast cancer survivor, but damn it I've been affected by breast cancer just the same. For life. I sacrificed my breasts to save my life. I've been to hell and back through this whole journey and the real kick in the behind is that I've done it all before I was sick. I was 100% healthy, walked into the hospital and let part of my body be cut off. And anyone who thinks that was easy, or thinks that I did this just to get better boobs (well let's face it that is the silver lining.....) is crazy, stupid, ignorant, or a combination of all of them.
Also, I make jokes. I do. In fact, I don't know a person who has been through a PBM who doesn't. Go through something like this and you get a few privileges...making jokes is one of them.
I'm not stupid, I know there will always be people who disagree with my decision for one reason or another. To them I say...I sincerely hope you never have to be in my shoes and make my decisions. And to cancer survivors I say, I sincerely respect and am in awe of the struggles you've been through. Cancer, of any kind, is a terrible disease and I pray that I see the day that it is eradicated.
I was catching up on blogs tonight and I saw that someone posted about HBOC Week and National Previvor Day. This is the last week of September, before Breast Cancer Awareness kicks off in October. Hmm... previvor BEFORE survivor. Interesting.... pun was intended don't you think? ;)