Preventative mastectomies under fire

Right 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.