Breast Cancer, Fear & Informed Choice(s)

pinkwashedAs we were taking a look back at the first 5 years of this blog, maybe you heard a little something about a certain celebrity who had a “preventive” double mastectomy.

How “brave” and “heroic”, folks said of Angelina Jolie’s going public about her decision, which others rushed to validate as “the right medical choice.”

Was it a well informed choice?

During last year’s Pink Ribbon Month, our local paper ran a story about two Modesto sisters who took the same route. Their choice, according to the article, was driven by two key factors: their mother being “a four-time cancer survivor” and finding out that they carried the BRCA1 gene themselves.

“I think watching my mom and knowing her story and then being given this knowledge, it was power,” said [one of the sisters]. “I said if I can block this cancer out, I am going to do it. It just made sense.”

Through decades of “awareness”-building, we have bought into the notion that cancer is something foreign and fearful, an outside invader (rather than a biological response) we must fight with every power we have. We see “early detection” as a worthy goal, even going so far as to equate it with cancer prevention. This trend is wonderfully critiqued in a recent essay by Peggy Orenstein who, herself,

used to believe that a mammogram saved my life. I even wrote that in the pages of this magazine.

* * *

Sixteen years later, my thinking has changed. As study after study revealed the limits of screening — and the dangers of overtreatment — a thought niggled at my consciousness. How much had my mammogram really mattered? Would the outcome have been the same had I bumped into the cancer on my own years later? It’s hard to argue with a good result. After all, I am alive and grateful to be here. But I’ve watched friends whose breast cancers were detected “early” die anyway. I’ve sweated out what blessedly turned out to be false alarms with many others.

In the words of a Reuters headline from last year, though, “in cancer science, many ‘discoveries’ don’t hold up.” The value of “preventive” double mastectomies certainly doesn’t seem to. According to research presented in San Diego last fall at the American Society of Clinical Oncology’s Quality Care Symposium, “Many women with cancer in one breast are choosing to have their healthy breast removed, too.”

The researchers looked at nearly 1,500 women who had been treated for early-stage breast cancer. Of those who chose mastectomy instead of lumpectomy, nearly 20 percent opted to have both breasts removed.

But of those who chose double mastectomy, three-quarters had no medical justification, [study co-author Sarah] Hawley tells Shots.

In fact, many women had a diagnosis of ductal carcinoma in situ or DCIS, considered a so-called stage zero breast cancer — a type many say shouldn’t really be considered cancer at all.

Says breast surgeon Monica Morrow in the same article, “People want absolute certainty. Unfortunately, even having a double mastectomy doesn’t provide certainty that breast cancer will not recur. So it’s a false sense of security.”

Another study, cited by Orenstein, found that most women who opted for “preventive” mastectomy weren’t even genetically predisposed to cancer. Its lead author “speculated they were basing their decisions not on medical advice but on an exaggerated sense of their risk.”

It’s not just “awareness” campaigns and the like that fuel our misapprehension of risk. Sometimes, physicians feed into it, too. This is shown in a powerful essay by a physician who tested positive for a marker of breast cancer and is opting not to go the surgical route. It’s well worth quoting at length:

[My breast surgeon]…tells me that my chances of developing cancer are 80 percent and that if she were in my shoes she would “just have them both removed.” I question her about her statistics and say that I thought my odds were much lower. She acknowledges that her numbers might be off but that surgery is still highly recommended. Her offhand manner suggests something deeply unserious—like a manicure.

I’m not ready for another operation. I was scared to do the first procedure and had canceled it twice. Although I used to be a vociferous advocate for aggressive medical interventions, my perspective changed radically when I began working as a house-call physician. My patients are too debilitated to go to the doctor’s office—and many were disabled by botched surgeries. I support them through the amputations, the infections, the intractable pain, the memory loss.

Most physicians don’t see these patients. When I had an office-based practice, I never saw the one-in-eight surgical patients who end up back in the hospital in 30 days. I didn’t see the problems with hospital-acquired infections. I didn’t know that clinician texting in the operating room is rampant or that medical administration errors are, according to the Emergency Care Research Institute, “among the most common errors in healthcare.”

With these not-so-uncommon problems, our current cavalier attitude about surgery is troubling. I’m concerned about my surgeon’s flippancy and I suggest alternatives: “There’s growing data that this is a lifestyle disease. You know the Women’s Health Initiative shows exercise can greatly decrease risk.”

“I don’t know. That may be true,” she shrugs. “If we don’t do surgery, then we’ll just do mammograms every six months.” When I object, saying that LCIS doesn’t show up on mammogram, she responds, “I know. It doesn’t make sense to me either.” It becomes evident that we don’t know how to deal with my condition. The medical system does not tolerate ambiguity well, so breast amputation has become the answer. When I point out that surgery has risks, she minimizes my concerns, since she’s “never had a problem.”

It’s hard to see how any patient’s choice could be truly informed in such circumstances.

Image by Topeka & Shawness County Public Library, via Flickr

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