I'm not a previvor. As I recall, that word was the topic of a contentious debate. I know I opened my mouth in the conversation. I'm not the shrinking violet type and can someone tell me what the hell that means anyway. I'm not up for my normal google/wiki detour.
Previvors. This year, the most famous previvor stepped forward. I'm hearing the sound of Walter White's voice. Except the words are askew. "Say My Name" is being overshadowed and drowned out by "Don't Say It" ..... If Breaking Bad wasn't part of your life, that last sentence means nothing to you. It's not important although I had no idea what the hell #BreakingBad was except to say I kept seeing it in the tweet stream and subsequently found myself having about ten days to watch 54 episodes so I didn't have to crawl under a rock before the series finale last Sunday.
Streaming Netflix? Fab-U-Lous. I watched it everywhere I waited. iPad, iPhone, Smart TV, laptop... and I was all caught up by Sunday. I'll confess I got carried away when an episode (or three) was streaming to my phone while I was in my car, stuck in traffic. It was more like books on tape. I didn't watch. I just listened.
Where the hell was I?
Previvors. Some have taken exception with that term, some have claimed ownership of the term having been the first to use it and some have it hanging over their heads like the proverbial sword of Damocles. Unfortunately, from all of the research I read, I know that one of the people with that label happens to be my daughter.
Despite the absence of a known BRCA mutation (in me), the history of my family and breast cancer doesn't bode well in the genetics arena. And that's a big problem.
A recently published study, conducted right here on Long Island, determined that most women were unable to accurately assess their risk of developing breast cancer. Most erred on the side of, "I'm at this high risk." I don't know what my daughter thinks. I only know she sucker punched me several months ago when she mentioned that someone told her she could remove her ovaries to help prevent her from developing breast cancer.
She used the P word. I chose to walk away from the conversation. Sometimes, we are just too damn close to a situation to be effective. Besides, I already discussed the screening protocol with my breast surgeon. I think I mumbled, "If you want to discuss this, we will sit down and I'll share what I know." She already knows I know. She accepts that I know. She may think I'm an idiot about everything else because, after all, isn't the way it is with moms and daughters until a certain age is reached? She hasn't reached that age just yet. I'm still an idiot. Except when it comes to breast cancer.
Soon, she will begin the screening process. Sonograms and MRI's and good luck getting the insurance company to approve those tests in a very young woman but I'll cross that bridge when I'm at the base. The breast surgeon has already discussed the dangers of radiation from mammography in young, dense breasts. The risk far outweighs the reward. There will be no mammograms.
Tamoxifen, I do believe, was just officially (or unofficially but strong points were made) recommended as a possible risk reducing medical intervention. I can't see her on tamoxifen, but again, it's still too soon for that conversation so I'll wait on that one, too. That stupid bridge is in the distance but damn, it IS getting closer.
Today, on the day that we educate about the dangers associated with exceptionally high risk women, I realize that part of the collateral damage I am suffering from my own cancer diagnosis, from my mom's cancer diagnoses, from my sisters' diagnoses is a crippling emotion. An awful fear. I hate that her options are still just screening.
Watchful waiting. That is the same exact maze I stepped into when I came of age after I was thrust into the "strong family history" category. She is why I feel it is so important to stand behind the collaboration I wrote about yesterday. I'm sure I raised more than a few eyebrows by supporting an organization I have called out on so many occasions.
It's complicated. And it's stagnant. It's time for a change and with her on one side and my mom on the other, I'm desperate for a shake up.
I suppose, to bottom line the whole thing, it's quite simple. Do whatever you want to me, just leave my kids alone. To that end, I will do whatever is necessary to try to eliminate any potential source of fear. It's just what moms do.
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