Wednesday, October 2, 2013


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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  1. Oh, craptastic, AM. Has your daughter had a BRCA test? Sitting here heaving an enormous, frustrated sigh. And how is your mom? I've been thinking so much of your mom and you, I didn't even twig it until now that you might have a daughter...who would of course be at risk with this family history. Bloody hell.

    In so many ways, I've often thought that the BRCA sword of Damocles is worse than an actual diagnosis. What a thing to have hanging over you if you're a young woman. What a thing to have hanging over you as a mom. The fact that we still don't have better, more accurate, widely available screening tools -- that don't stockpile radiation in our bodies -- makes me nuts.

    Gritting my teeth through this month. Hugs to you, dear one. Kathi

  2. AM - When I was tested for the BRCA gene in 1998 at North Shore Univ. and tested positive for BRCA2 they told me everything I could do to try and prevent the cancer. Because ovarian cancer was so prominent in my family I always had sonograms and the ca-125 test done every year and then a mammogram every year also. The insurance company didn't deny any of my tests then. Fast forward 14 years and I was diagnosed with stage IIIc breast cancer. I never thought of myself as a previvor and like you I don't really like the term. I did everything my doctors told me to do but was unable to prevent myself from having cancer. It is up to you, your daughter and the doctor to figure out what is best for your daughter. I did have a total Hysterectomy and mastectomy to lower my risk but this was done after the cancer.

  3. I hear you. I have a 17 year old daughter and I'm constantly thinking about her future as it relates to breast cancer. I compartmentalize it and hope that by the time she reaches the age to worry (20's, I'm thinking), there will be a cure. I know, I'm ever the optimist, but you've gotta do what you've gotta do, to get through the day. And, Breaking Bad - SO amazing, eh?

  4. You are, as my husband would describe, one impressive "momma tiger" :) There's so much here for you and your daughter to take in, as it is with other women in the same situation. When it comes time to cross that bridge I hope you don't get resistance from the insurance companies. Here in Canada, if there's a significant history of breast cancer in a family I think women can get the screening even without the BRCA gene. Maybe it's the same in the states? ~Catherine

  5. CI an relate to this? Oh yeah. I'm thankful my eldest daughter didn't inherit my mutant BRCA1 gene, but have yet to learn about my baby, who is only 21 and still in college and hasn't been tested yet. I pray she doesn't have it, but am not burying my head in the sand. At this point my questions are more related to when she should be tested. She's still in school, a senior in college. But she's talking about another 5 years for a PhD - do we wait until she's done? And what do we do if she tests positive? Yeah, I'm grateful we live near a major medical facility - one of the best in the country - but that doesn't make all this go away. I know this is tough - we'll do anything to protect our kids - but how do you protect them from this? Please know I'm with you in spirit as you and your daughter go through all this. I may have to come to you for advice in the next couple of years....... Love, Ellen xoxo

    1. I knew I should have reviewed this before I hit "post" - the first sentence should be Can I relate to this?

  6. dear Anne Marie,

    though I have not experienced having to worry about the BRCA issue nor the connection of family history with BC, my heart goes out to you and all the other mothers who carry this sort of anguished anxiety, and also for your daughters. it's all so emotionally complex, especially with mother's built-in protective mechanism that must constantly be in play. please know, dear one, that I will keep you and your daughter close to my heart, hoping the biggest hope I can muster that when the time comes, you will find your way through it. we need some one like that young zack (can't recall his last name) that was so successful in developing a test to detect early pancreatic cancer - I believe it's the younger minds that have been able to focus in on genetic issues and who are driven by pure determination and caring to help medical science move forward in this area. but in the meantime, I am so glad you wrote about this subject in today's post; it's another piece of the picture of 'AWARENESS' that most people haven't a clue about. but now, because you've highlighted it,, both from your perspective and the current perspective of your daughter, many more people will be informed about yet another issue of this bucket of fuckedness called breast cancer.

    much love and light to you,your mom, your sister, your daughter and the other commenters. XOXOXOX

    Karen, TC

  7. As someone who has the "other" mutation (PTEN) I too hate that it's only SCREENINGS for me. Yet, I hear from many of the doctors on my team "PBM PBM PBM PBM PBM" (I'm too tired to type the whole thing out. You get my drift.) There's soooooo much more to my story than ANOTHER FREAKING SURGERY (I already had 2 brain surgeries). AND, while I have no children (very sad point for me, but thankful [?] about it now) and ZERO FAMILY HISTORY of breast or ovarian or really any cancer for that matter....I'm not quite sure what my comment here is. Except.


    Am I going to be a Previvor? Do I WANT to be one? Do I get to be one? Knowing what I know now about Cowden's Syndrome (PTEN Hamartoma Syndrome)? Don't I have ENOUGH TO WORRY About with 2 brain tumors to manage? I don't know. I don't know what to do. I don't know what the right answer for me is.

    Thank you for having a place where I can come to read and nod my head and say, "Yep. I get it."

    Thank you.


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