Preventative mastectomies under fire
Posted: January 23, 2013 Filed under: breast cancer | Tags: Allyn Rose, Allyn Rose mastectomy, Paget Disease, preventative mastectomy, prophylactic mastectomy, yoga positions 22 CommentsRight before I left for yoga today, I read a blog post that got my blood boiling. Not a good state of mind for walking into yoga, right? The main reason I put myself through yoga is to calm my mind. Getting all riled up right before class doesn’t quite fit the mind-body-spirit calm I’m trying to achieve.
I spent the first part of the class kicking myself for not being able to stop thinking about the post. I spent the second part of the class kicking myself for allowing myself to get so worked up and for feeling as if I need to butt in and right the wrongs that occur on any given day in suburbia. I guess I’m like 50 Cent, who says he’s a writer and a fighter. I don’t fancy myself much of a writer (I just convey what’s in my head onto the computer screen and hit “publish”) but I suppose I am a fighter. I knew I would not put the issue to rest but would blog about it myself. (I’m not including a link to the post that got me so fired up because I don’t want to drive any traffic to that site.)
Fighting is the last thing I want to think about as I enter the darkened yoga room with calming music and tinkling wind chimes, and I sure didn’t want to interrupt my pursuit of a good stretch and a quieted mind. I came up with many reasons why I should leave it alone — when I should have been inhaling and exhaling and seeking that inner peace. I talked myself off the ledge while downward-facing-dogging. I scolded myself for being a rabble-rouser while I planked. I reminded myself that I need not be a crusader of truth and justice as I reclined in pigeon. As the instructor asked us to set our intention for the class, I visualized a blackboard with myself writing “I will not blog angrily” over and over, Bart Simpson style.
It was all for naught. My futile attempt to leave it alone, to let it go was just that — futile. I blame some of it on our yoga instructor. She led me to do it. Indirectly, of course. As we went through the palm pose, she mentioned that the beauty of the palm is that it can bend and sway with changes and things that don’t matter, but for things that are important, the palm can stand firm.
That did it. I’m not much of a bending, swaying palm but more of a stand-firm palm.
The topic of the blog post that got my palm-fronds in a twist? This woman.
nydailynews.com
Allyn Rose, Miss Maryland, who competed in the Miss America contest 10 days ago.
She didn’t win the pageant, so why is some half-baked blogger (the other guy, not me) blogging about Rose? Because Rose is planning to undergo a preventative bilateral mastectomy this summer.
Quick back story: Rose’s mom died from breast cancer at age 50; Rose was just 16. Her grandmother and great aunt also died from breast cancer. She said, “I had to become my own mentor. I had to go pick out my prom dress by myself. I had to go to my high school graduation without my mom. She didn’t see me go off to college or go on my first date or drive a car for the first time.”
Despite the existence of a genetic anomaly in this family that causes women to get — and die from — breast cancer, the other blogger has judged her harshly, saying that she’s buying into a culture of self-mutilation and that popularity and that acclaim are just one surgery away. Even more disturbing is his comment that preventative mastectomies are butchery. See why it was so hard for this palm to bend and sway?
The backlash that is raining down on Rose is harsh, both in the form of the comments on Mr Half-Baked’s blog and comments from medical professionals on the subject.
Sandra Swain, medical director of Washington Cancer Institute in Washington, DC, fears that women who have lost family members to breast cancer could take Rose’s example too literally. “We’re seen a rise in prophylactic mastectomies and a lot of it is not for a medical reason; it is because of fear and anxiety,” she said.
What?? The idea that a medical professional would downplay the role that fear plays in cancer is sick. Guess what, Sandra — cancer is scary. Watching someone you love die from cancer is scary. Wondering if you’re next is scary. I’m going to go out on a limb here and say that every aspect of cancer is scary. Second, the implication that women would choose to undergo a prophylactic mastectomy because Miss Delaware suggests it is ludicrous. Is this the same mentality that drives advertising execs to create campaigns that imply that if a man uses a particular brand of shaving cream, a hot, scantily clad woman will be all over him in his bathroom?
More backlash via a New York Times article published yesterday, in which researchers throw out some numbers on preventative mastectomies: “As many as 15 percent of women with breast cancer — 30,000 a year — opt to have both breasts removed, up from less than 3 percent in the late 1990s.” Is this rise because of hysterical women making rash decisions, as Swain suggests? Or is it based on improved screening that finds breast tumors earlier? Or is it attributed to the fact that despite what Komen wants us to believe, precious little progress has been made in 30 years and that women continue to be diagnosed with and die from a disease that has no cure? The NYT article goes on to say that “it appears that the vast majority of these women [getting preventative mastectomies] have never received genetic testing or counseling and are basing the decision on exaggerated fears about their risk of recurrence.”
The feminist in me is disgusted by the implication that women make such rash decisions. What if a man chose to have a preventative prostatectomy if he had a family history of the disease? Would there be an article in The New York Times about it, with so-called health experts criticizing him and implying that he made a snap decision? I defy these talking heads to find a woman who so breezily agrees to have both her breasts removed in a long surgery with an even longer recovery. Trust me, this decision is made with careful consideration of the gut-wrenching pros and cons.
How about this part of the NYT article: “In addition, doctors say an increasing number of women who have never had a cancer diagnosis are demanding mastectomies based on genetic risk. (Cancer databases don’t track these women, so their numbers are unknown.)”
If cancer databases don’t track these women, how can doctors know that more of them are demanding mastectomies? Is this yet another example of how women in this situation are patronized?
Dr. Isabelle Bedrosian, a surgical oncologist at M.D. Anderson Cancer Center right here in Houston spoke out on this issue, saying “We are confronting almost an epidemic of prophylactic mastectomy. I think the medical community has taken notice. We don’t have data that say oncologically this is a necessity, so why are women making this choice?”
If you believe the NYT article, women are making this choice because they have nothing better to do. Come on, man.
To Dr Bedrosian, I say that until prophylactic mastectomy rates actually do reach epidemic status, perhaps we should focus on the fact that breast cancer is the epidemic here, not the surgery used to get rid of it.
Can we consider for a second that women like Rose, with horror-story caliber genetics, are proactive about their health? Can we entertain the idea that maybe women are willing to sacrifice their breasts in order to avoid a disease that kills nearly 40,000 women a year in this country alone? Can we realize that there are countless women around the globe who’ve watched their mother/sister/aunt/cousin/grandmother die from a relentless disease, who don’t want that same fate to befall them? Where’s the database on women like me, who chose a bilateral mastectomy although cancer was found in just one breast, only to discover post-mastectomy that the other breast was also infected? Had I not opted for a bilateral, the other breast–which contained a cluster of cancerous cells that measured 5 cm in diameter, as well as Paget Disease to boot–would become a ticking time bomb. Who knows, perhaps the cancerous activity in the other breast might not have been discovered until it was late-stage and hard–or impossible–to eradicate. The idea that any woman makes the decision to have a bilateral mastectomy willy-nilly is beyond insulting.
I’m tempted to treat Mr Half-baked blogger to a brief history of my own cancer diagnosis, at age 40, and the bilateral mastectomy I had while my kids were 8 and 10 years old. I would recount how I was unable to lift my arms for a week, and had to have help to wash my face, brush my teeth, change clothes, and feed myself. I would explain that in addition to losing both my breasts, I contracted a nasty infection 3 weeks later that kept me hospitalized for nearly a month — while my 10-year-old son’s baseball team went to the State Championship — and required multiple rounds of IV antibiotics and oral drugs for nearly a year. I would mention that while I’m currently NED, not a day goes by that I don’t worry about recurrence, and that after undergoing reconstruction that was deemed successful, I am still confronted daily by the scars that serve as a blatant reminder of the disease. I would concluded my rant by asking if he still feels qualified to judge a woman for “mutilating” her body.
Namaste, y’all.
The Pink Underbelly 
I wonder if some of those people have house insurance?
I know, right? Excellent point, Bill.
Thanks for being a palm that stand firm and tall–and sharing this story. How dare others intrude on such a brave, private decision. i appreciate your courage and perseverance.
It’s my pleasure, Patti. I’m apparently ill-equipped to let things like this go, thus the babbling posts.
This is obvious BS. Last year, the same douche-wads said self breast exams were not only unnecessary, but actually HARMED women by causing “unnecessary stress when they find something”.
WTF?
The logic astounds me.
Could it be less expensive for insurance companies to pay for treatment for breast cancer than pay for a prophylactic mastectomy? Maybe the “bean counters” have this one figured out and that’s the conclusion.
There has to be some ulterior motive for this stupidity………
WTF indeed, Savvy. It makes no sense tome either. I’m glad you share my outrage!
Namaste indeed. I wonder if the blogger in your crosshairs would so vigorously challenge a facelift? Lipo? Gastric bypass? Not equating them with a mastectomy, just saying there are many truly optional surgical procedures we accept without blinking. None of them carry the promise of avoiding cancer. Also, let’s admit that breasts, while bit without their merits, are not vital, not required, not necessary in any way to living a full and complete life. You don’t even get a parking tag for losing them. So if a reasonable young women decides to have hers removed to avoid dying from cancer like too many women in her family have and all scientific evidence suggests she is likely fated for it as well, I say beautiful.
You’re so wise, Ed, and I always enjoy your take on these issues. And where is my parking tag, anyway??
I am one of “those” women who decided to have a double mastectomy when the cancer was only in one breast. I am qualified to make that decision because this is my body! This beautiful young woman has the same right. Thank you for bringing this issue to the light and the fight.
Meg
Hi Meg! Thanks for weighing in. You’re so right–we’re qualified to make these decisions bc it’s our bodies. Period.
I can see why this got you fumed. It’s frustrating to hear people judge without having experienced that fear, the pain, or the anxiety of cancer. Every individual woman should have right to choose what comes next. Whether it’s mammograms for life, surgery, tamoxifen or whatever. It’s a choice. Why not just offer support. After all, these ‘save the boob’ campaigns are really – bottom line – about saving the women. (Although this fellow seems to have been confused about that.)
And who knows what options will eventually become available. But for now, surgery may be the best answer some women in terms of fear and threat. ~Catherine
Catherine, it seems to come down to the old adage about not judging someone unless you’ve walked a mile in their shoes. Why can’t we expect support instead, as you suggest? One thing I learned about grieving after my mom died was that no one has a right to tell anyone else how to grieve. If you can’t be supportive, I’m not interested in hearing what you have to say. So there!
Here was MY two cents on the Huff Post piece about this….. think I need to go blast them at the NYT… and Namaste back at ya….. I’m pulling an Alicia Keys …. This Girl is on FIRE (literally… no heat in the house and the fire is roaring)….. Anyway.. My “fity-cents”
Bottom line for me. Choices made on evidence based science are important. The choice is no one’s business but the woman making that choice. Also, HUGELY important with breast cancer and I wish I could find a way to see this incorporated into a standard of care: it’s not only about the surgeon. We SHOULD be talking to medical oncologists, radiation oncologists and have our pathology slides read by two different doctors to have the best and most extensive information upon which to base those decisions. (this refers to another commenter in that thread ) smiddl makes an excellent point in her comment…. major props for knowing there are other “players” in the treatment of this disease and for reaching out to have them weigh in so SHE could make a choice that worked for her. Again, no one makes a “wrong choice” or a “bad choice” because we all must live with our choices. The important thing is to make an “informed choice.”
Rock on …..
AnneMarie
“Choices made on evidence based science are important.” Well said. And yes, the decision should include input from the other “players” as well. Perhaps if well-informed bloggers like you continue to shout it from the rooftops, it will become standard. I always enjoy your comments!
This is the issue that will not quit. There was a post criticizing preventative mastectomy on Huffington by a female back in November that I wrote about. The good news is that a male doctor wrote a support piece a few days later on Huffington–he completely understood the fear aspect. This subject rears its ugly head every so often it seems, especially if a celebrity name is attached. Would it be crass of me to point out that there seemed to be less of an outcry when it was Sharon Osbourne–an “older” woman–having the surgery, than when an attractive, young woman “mutilates” her body? Or perhaps that is just my perception of it.
I am on the other side here, in that I opted to keep as much of my breast as possible, rather than have preventative surgery–although I do feel mutilated, given my scar, how much was taken and where. I do worry about cancer returning…but I worry that it could come back not just in my breasts, but my lungs, liver, brain…so short of cutting out all these things, there seems little I can do to calm my fears. Heck, might as well keep my breasts is my attitude, it is only one more spot cancer can lurk!
No, that’s not just your perception — I wondered the same thing about Sharon Osborne. I don’t recall any backlash aimed at her.
i can’t even imagine how infuriating it must be to hear all the criticism of what must have been/is such an emotionally and medically excruciating decision; and how downright hurtful it is. too bad we can’t give that blogger an up close and personal transfusion of the reality of what it feels like to be on the receiving end of having to make that kind of choice. or maybe we can posse up and just cut his balls off – that is, if he has any.
love, XO,
karen, TC
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Aggravating. Let women make their choices without being judged so harshly for it.
This is a good rant, Nancy. I’m with you all the way on it as someone who lost my mom and aunt to breast cancer and then diagnosed myself at 44. I struggle with the options, knowing the statistics, but in the end went with what I could live with everyday without regret and that was a bilateral mastectomy even though the cancer was in just one breast. I don’t know why this choice bothers so many. I don’t see it as self mutilation, but just the way I chose to deal with it. People should butt out. Great post. xoxo
To those who chose preventative mastectomy, pat yourselves on the back, you did the right thing. I struggled in choosing between double mastectomy and lumpectomy/radiation/tamoxifen for a stage 0 ductal carcinoma in one breast. Nobody made this decision easy for me – no book, no research, no doctor and no family member or friend. I chose the lumpectomy/rad/tam and guess what? Now, I have pulmonary fibrosis from the radiation which makes it near impossible to sleep/breath properly at night and I’ve had 3 incidences of vaginal bleeding after menopause for which I had 2 D&Cs. There’s a much bigger story here that the press hasn’t covered! Sick!!
I wrote a response after seeing a misguided article in the NYTimes (http://www.bravebosom.com/2013/01/22/the-latest-craze/). This week, it feels like so much has converged on our community of Young Previvors. Facebook shut down our group on Friday and we’re working to get it back.