IDLEs

Lately, much has been written about the rush-to-mastectomy decisions adopted by women with DCIS diagnoses. DCIS (ductal carcinoma in situ) is the diagnosis given when abnormal cells reside in the milk ducts. It is precancerous and noninvasive. It is not life-threatening, although it can lead to an increased risk of developing an invasive cancer. While it is unquestionably scary to receive such a diagnosis, some in the medical community are questioning whether a slash-and-burn reaction to DCIS is appropriate. The current standard of care for DCIS is surgery and radiation. A natural reaction for a woman with DCIS is to undergo the most far-reaching form of treatment available. I won’t argue with that, because no one has the right to judge another person’s reaction to or decisions toward a cancer diagnosis. Anyone who tries to should be punched in the brain. Repeatedly.

That said, data don’t lie, and the case being made for a less-aggressive approach to DCIS is gaining ground.  Dr Laura Esserman, a breast surgeon at the University of California, San Francisco, is setting the pace. In a recent New York Times article, Esserman says her goal is “to move the field and do right by our patients.”

Jim Wilson, The New York Times

Jim Wilson, The New York Times

Instead of immediately ordering biopsies for women with unsettling findings on their mammograms, Dr Esserman recommends active surveillance. She favors the “wait and see” approach, speaking out about the myriad ways in which a woman is adversely affected by slash-and-burn treatment for cancers that rarely progress beyond DCIS.

Dr Esserman is bringing to light the fact that mammograms — while valuable — find the slow-growing, non-metastasizing cancers that lead to panic more than they find the most lethal forms of breast cancer. She is lobbying for big changes in the early-detection world and has asked the National Cancer Institute to consider dropping the word “carcinoma” from the DCIS label. Instead, Esserman would like for DCIS to be renamed “indolent lesions of epithelial origin.” IDLE would replace DCIS as the way to describe a stage 0 diagnosis. IDLE is catchy and much friendlier than DCIS, if you ask me.

This woman is turning the breast-cancer world on its head, and I like it. In an era of less face-time with doctors, Dr Esserman spends as much time as needed with each patient, often texting or calling them at home. A big part of her “wait and see” approach to DCIS is asking the patients soul-searching questions and utilizing specific testing to gather further evidence before recommending surgery. She’s pushing for more innovation in clinical trials and for fine-tuning the process of screening for breast cancer.  In cases for which she does recommend surgery, Dr Esserman counsels and frets like a family member, and even sings to her patients as they undergo anesthesia. Personally, I’d much prefer a serenade to a prayer before I go under the knife. I can imagine her patients, smiling and relaxed, as they enter the last blissful sleep they will enjoy for a while to come.

I love Dr Esserman. I don’t know her, but I love her. I love that she’s crashing through long-standing views and taking the road less traveled. I believe she will enact great change in the landscape of breast cancer. I wonder how I would have reacted to my own breast cancer diagnosis if mine had lacked an invasive tumor. If my cancer was simply DCIS, would I have chosen a different path? I don’t know, but I do know how scary my diagnosis was. I know that the scorched-earth treatment plan was right for me. I had watched my mom die from cancer at age 67. My kids were still in grade school when “the C word” was applied to me. I wanted to be as aggressive as possible, so my choice was to go balls-out against cancer. And it’s a good thing I did, because my “non-affected” breast turned out to be riddled with cancer. Nothing showed up, though, on any of the screenings. Nothing. When Dr Esserman mentioned that mammograms don’t find the more lethal forms of breast cancer, I nodded my head knowingly and actively talked myself off the roof rather than allowing myself to think “what if?” What if I had chosen a single lumpectomy or single mastectomy, and that smattering of cancer cells and Paget disease in my “unaffected” breast had continued to evade detection? Would I be sitting here, typing this post? Would I be glancing up from my computer to see this guy outside my window? IMG_4795What if?

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The wrong approach?

In this article for The New York Times, Peggy Orenstein addresses one of the many tricky topics surrounding breast cancer: to remove or not remove the “unaffected” breast?

It’s a tricky topic because the research and prevailing medical consensus are in direct opposition to gut instinct. Research says a bilateral mastectomy in patients with cancer in just one breast has little impact on survivability. Doctors say the odds of surviving low-grade noninvasive breast cancer is the same whether we undergo a lumpectomy or a mastectomy. But our guts often say “lop em both off.”

That’s what my gut told me to do, even after extensive research and number-crunching. My gut instinct leaped immediately to a slash-and-burn tactic. My darling breast surgeon required me to wait at least 3 days before making my decision on the lumpectomy vs mastectomy debate; I complied but my decision was made in the first 10 minutes of grasping my diagnosis. My gut told me to opt for the bilateral mastectomy.

I suppose this puts me in the category of women opting for a CPM, or contralateral prophylactic mastectomy. The experts whom Orenstein spoke to about the CPM debate refer to the increase in women undergoing CPM as “epidemic” and “alarming” and believe it is driven by women not fully understanding the math. Girls have always been bad at math, right? That’s the message I got, growing up in the 1970s in suburban America.

2013 study done by Boston’s famed Dana-Farber clinic revealed that women younger than 40 with no increased genetic risk who had cancer in one breast believed that “within five years, 10 out of 100 of them would develop it in the other; the actual risk is about 2 to 4 percent.”

Upon my diagnosis, I understood the math. It wasn’t easy and it was confusing. It took time and effort, but it was not beyond me (having a math guru in the house helped tremendously, but the point still stands).  I understood that my chances of successfully removing the cancer in my “affected” breast was the same whether it was done via lumpectomy or mastectomy. I understood that my chances of developing the same cancer in the other breast were slim to none, because, as Orenstein says,”cancer doesn’t just leap from breast to breast.” I understood that low-grade noninvasive lazy cancers don’t typically become deadly; it takes a cancer that metastasizes to do that.

I also understood that a bilateral mastectomy is not an easy surgery. Not by a long shot. As Orenstein so colorfully describes it, “breasts don’t just screw off, like jar lids.” Undergoing a mastectomy involves not only losing the breast itself but also (typically) the nipple and areola, as well as the lining of the chest muscles. Factor in the JP drains that are snaked into the traumatized chest, just to add insult to injury. I couldn’t lift my arms for days after my mastectomy and needed help with the simplest things, such as brushing my teeth and applying chapstick. I needed a new, temporary wardrobe of tops that buttoned or zipped up, because lifting my arms over my head to put on or take off a shirt was a no-go for my battered upper body. I needed help — lots of help — which doesn’t jive with my stubborn and independent countenance.

I knew that choosing the harder road of a bilateral mastectomy over the easier, less-invasive lumpectomy did not increase my odds of surviving breast cancer. At least according to the studies. I knew that a mastectomy is much riskier than a lumpectomy. I knew that recovery would be much harder and more time-consuming. Nonetheless, my gut told me to take that more difficult road. My gut was right.

Orenstein spoke to Steven J. Katz, a University of Michigan professor of medicine and health management. He studies medical decision-making, and has found that people tend to react from the gut when confronted with a diagnosis because we are wired to make “fast-flow decisions” that make us want to flee. Understandable to anyone who has been on the other side of the doctor delivering bad news. Upon diagnosis, Orenstein recalls feeling “as if a humongous cockroach had been dropped onto my chest. I could barely contain the urge to bat frantically at my breast screaming, ‘Get it off! Get it off!'” Her version involved a giant cockroach; my version involved a scorched earth.

Dr. Katz says that doctors need to understand how our gut reaction affects our post-diagnosis decision. He speaks of “the power of anticipated regret: how people imagine they’d feel if their illness returned and they had not done ‘everything’ to fight it when they’d had the chance. Patients will go to extremes to restore peace of mind, even undergoing surgery that, paradoxically, won’t change the medical basis for their fear.”

It is a paradox: our intellectual self versus our gut.

Orenstein points out that “it seems almost primal to offer up a healthy breast to fate, as a symbol of our willingness to give all we have to and for our families. It’s hard to imagine, by contrast, that someone with a basal cell carcinoma on one ear would needlessly remove the other one ‘just in case’ or for the sake of symmetry.”

While it may be hard to imagine, there’s no way to predict how one will react to a cancer diagnosis. All the studies and statistics are worthless in the face of the worst-possible scenario, which is facing cancer. I was 40 years old, with 2 kids under the age of 10, when I faced that scenario. Of course I thought of them and the possibility of leaving them motherless and rudderless. Having lost my own sweet mama brought that into even clearer focus. Perhaps my decision to undergo a CPM was based more on emotion than on rational thought. No doubt my gut was driving that bus.

But guess what? My gut is a careful and prescient driver. In steering me toward the more-radical surgery option, my gut saved me. Maybe saved my life, but definitely saved me from undergoing a second mastectomy, one that would most definitely not have been of the CPM variety.

My “unaffected” breast had cancer, too. And Paget disease to boot. Nothing had showed up on any of the myriad tests or scans I’d had before my mastectomy. It was the surgical pathology on the “unaffected” breast that finally revealed those cancers. How long would those cancers have grown, unannounced and unaccounted for, had I not followed my instinct and listened to my gut? I don’t like to think about that.

I’ve learned — the hard way, of course — that I’m one of those medical weirdos whose body does not conform to standard protocols. I’m the kook who gets the weird stuff; to wit, Paget disease accounts for a mere 1 to 4 percent all breast cancers, according to the National Cancer Institute. Ditto the post-mastectomy infection I contracted. Who gets a microbacterium fortitum?? So few people that my infectious disease team — yes, I had a team of ID docs — still wonders where the hell that originated.

We medical weirdos don’t fit into studies or facts or figures. We are the ones who keep their doctors up at night, scratching their heads and wondering what?? what?? what is going on here?? We are the ones for whom the “if it can go wrong, it will” axiom applies. We are the ones who make other people reassess the shittyness of their situation (you’re welcome, by the way).

We are the ones who follow our gut and don’t look back. Is that the wrong approach? Not for me. follow-your-gut

 


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

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.