When I was diagnosed BRCA2+, I signed up for any study or research project that was relevant to my situation. I knew my fate was pretty much sealed, but I wanted to feel like I could at least possibly help other people (like BRCA, this is a trait I most certainly inherited from my father, who constantly goes above and beyond to do things for others). Through many of these studies, I encountered the term “previvor.” This is the term used for people who are BRCA+ who are surviving the wait to be diagnosed with cancer or the period before choosing undergoing prophylactic treatment.
I always found “previvor” to be offensive, and I said this in multiple studies. To say or act as if I were surviving anything, when there are so many out there who are actually battling cancer, felt to me to denigrate the real survivors. So I never referred to myself as a previvor, and in my own research and reading, I’d avoid forums where women discussed previving.
So now I guess I’m technically a survivor, since I was diagnosed with BC and I lived through it. But this feels wrong to me too. I knew I had cancer for about two weeks before I had surgery and within only days of having surgery, learned that all the pathology was clean and non-invasive. I won’t need any treatment. So really all I did was make it through the surgery, and that had a lot less to do with my struggle or will to live than it did with the talents of the anesthesiologist.
I guess I don’t think women really survive breast cancer. I think they survive the treatment. I mean, I won’t have had chemo or radiation, and those are the bad parts; those are the parts that gnaw at your will to live – that’s what makes you a survivor -doubting whether you can get through it but persevering through sheer will. Having cancer at my stage is nothing – I am not sick and I won’t be; I wont have had my will to live tested. So I think it’s insulting to women who have gone through so much more to call myself a survivor of anything.
This is why it’s also been unnerving to me how many people have complimented me on my strength and how impressively I’ve behaved through such remarkable struggle, on how brave I am. I don’t think I’ve done anything! I was planning to have this surgery anyway. The diagnosis just moved up the timeline. I didn’t really have a choice once the DCIS was found.
I suppose I could have gone a slightly easier route- had a lumpectomy with a round or radiation. But it turned out my breast was full of DCIS – they would have had to remove the whole thing most likely anyway. And then I’d still be living with the death-trap of the remaining breast.
So again, I didn’t do anything brave by choosing this route – I did what was the smart thing to do. I guess because I make my decisions on practicality, they don’t feel so brave. They just feel like the obvious thing to do.