This article offers another voice as the October sea of pink descends upon us. It addresses the issue of BRCA+ and prophylactic mastectomies. The author posted a link on the YSC (Young Survival Coalition).
There's more to breast cancer than the pinking of the disease!
BethanyA
(EIGHT weeks out from PBM. EIGHTEEN months out from BRCA diagnosis. EIGHT years out from breast cancer!)
Newsflash: Breast Cancer Sucks, and You Can Die From It
http://www.huffingtonpost.com/lauren..._b_126203.html
The Huffington Post
September 17, 2008
Lauren Cahn
"As we wind towards October, the very pinkest month of the year, the month when the media bombards us with breast cancer news, breast cancer survivor stories, breast cancer foot races, breast cancer bracelets, breast cancer blah blah blah, I find myself feeling rather cross.
You see, it's all quite admirable that through Breast Cancer Awareness Month, the media has now made us aware of breast cancer, that anyone can get it, that everyone should be on the lookout for it, that survivors walk (and run 5k races) amongst us. The color we all associate with breast cancer is pink, the same color we associate with those fabulous, sexy females from Sex and the City. We have beauty products brought to us by "Cancer Vixen", that stiletto-wearing hottie who kicked cancer's ass and lived to write eponymously-entitled cartoons about it. We have Christina Applegate announcing to anyone who will listen that her double mastectomy was a success -- "they got it all" -- and therefore it follows that she will not die of breast cancer (nay, she will live into her nineties with her cute, newly-reconstructed boobies).
Don't get me wrong: this is all great.
It means that when I was diagnosed with breast cancer in 2002, people didn't shun me or my family. Indeed, I became a bit of a celebrity in the circles in which I traveled. Everyone wanted a piece of me, it seemed. They called, they wrote, they visited, they sent me handbags, they cooked for my kids. Even my favorite shoe boutique on the Upper East Side got in on the act -- sending me a fabulous flower arrangement when I was in the hospital recovering from my double mastectomy, with a card that told me to come in for some hot new boots as soon as I was able.
More important: it also means that there was enough money in the breast cancer research pot to provide me with the efficacious treatments (including Genentech's Herceptin, a relatively new drug therapy for the specific type of breast cancer known as "her2neu+++", with which I was diagnosed) that undoubtedly saved my life.
However, there is a dark side to all this breast cancer cheer. And I am here to tell you about it. Allow me preface it by saying that it is just my opinion. I am not a doctor, nor am I married to one. And I have certainly never played on on TV.
You ready? Brace yourselves, because what I am about to say is something you don't want to hear. And scarier, it is something that many people no longer seem to realize:
Women are still dying from breast cancer.
Even with early detection. Even with a good attitude. Even with talented surgeons and targeted therapies. If you don't believe me, take a look at the Bulletin Boards on the Young Survival Coalition's web site. Or on the Her2Neu (a strain of breast cancer -- the one that I had) Support Board. Or the iVillage Breast Cancer Support message board.
Maybe a reality check isn't something you want when you're being bombarded with "Breast Cancer Awareness" messages. After all, that would be kind of scary. And so the message that breast cancer remains a major killer of women still gets out there, but it gets out there very quietly. And I mean that literally. For example, in television news coverage of the NYC Komen Race for the Cure, the screen briefly and silently flashed some rather ugly statistics about breast cancer before cutting to a far more lingering shot of the Knicks City Dancers executing pelvic thrusts to loud hip-hop music. They all had really nice boobs, I might add.
But the really nice thing about reality is that it empowers us to make informed and rational decisions. The sexy pink hype that now surrounds breast cancer has misled some of us into thinking that breast cancer is something less than a very ugly, life-threatening illness for which the treatment is brutal, nay, cruel.
A friend of mine recently confided in me that she tested positive for one of the BRCA gene mutations -- just like Christina Applegate. Unlike Christina, she has made it into her late forties without having had a breast cancer diagnosis. I assumed that she would be scheduling a double mastectomy soon, since she told me that her BRCA status means that she has an 85% chance of developing breast cancer during her lifetime. That's a pretty significant likelihood, and one which she could significantly reduce by having her breasts removed.
But I was wrong. At this point, my friend has chosen not to remove her breasts but to undergo an intensive surveillance program whereby every six months she will have a mammogram, an ultrasound or an MRI (or some combination thereof). Her rationale is that a double mastectomy seems "drastic", when she could simply wait to treat the cancer if and when she gets it (which has an 85% certainty of happening).
I was surprised to hear her decision because my own experience as a breast cancer survivor taught me that surveillance is not foolproof, and that early detection does not necessarily eliminate the need for chemotherapy (or the possibility of dying of breast cancer anyway, since chemo is not a guaranteed cure for breast cancer at this point in time).
My breast cancer was "occult", meaning that it was entirely undetectable via mammogram, even after it had been diagnosed. Further, one of my three breast tumors was undetectable by any means until my breast had been removed and dissected by pathologists. That particular tumor -- invisible and unpalpable -- was nearly an inch in size.
But mostly, I was surprised because here she has been given what I consider to be an incredible gift: the chance to avoid ever getting breast cancer, and instead, she is choosing to wait for a diagnosis that is 85% likely to occur. And the thing about waiting for a diagnosis is that you don' t really know how it's going to play out.
In my case, I had caught my breast cancer very very early -- as soon as I could feel it, which was the earliest that it could be caught, since it was in essence, "invisible". Nevertheless, it was already at "Stage 2" with three lymph nodes involved. I was told by my doctor that if I wanted to increase my chances of surviving beyond 65%, I would have to have chemotherapy.
While chemo wasn't the worst thing that could ever have happened to me in my life, it was definitely extremely unpleasant. Far more unpleasant than my double mastectomy. Losing my hair, my eyelashes and my eyebrows, gaining 20 pounds for no apparent reason, not being able to take my children to school because I couldn't get out of bed, spending a week in the hospital because the chemo rendered my immune system incapable of fighting even a stupid eye infection -- were far worse to me than losing my breasts. And if I could have avoided all of that by having my breasts removed in advance -- hell, by having my breasts, a pinky finger and an eyeball removed in advance -- I would have gladly done so.
Let me put it another way: if you never get breast cancer, you never have to have chemo for breast cancer. And chemo truly sucks.
On the other hand, chemo saves lives. Of course if you never get breast cancer, then you don't have to worry about dying from breast cancer.
But if you do get breast cancer, you can die from it.
It's not something that we hear a lot about in this day and age of pink empowerment and stiletto-wearing, ass-kicking cancer survivor cartoons. But it's something that I believe we all need to remember even as we're singing the praises of early detection and cheering on the drug companies that arm us with increasingly effective drug therapies. Because surviving breast cancer is great, but never getting it is even better. And in my opinion, anyone who has the power to choose to reduce her chances of getting breast cancer from 85% to almost nil ought never to be misled by all that rosy-hued cheer into thinking otherwise. "
Marcia
Have to share this article with all of you!!
gift) are giving our loved ones a feeling of empowerment. I truly thank our wonderful ladies and men who put the positive spin on B.C. 
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