Author Archive

Medical Errors and Breast Cancer

A headline in today’s New York Times got my attention: Medical Errors May Cause Over 250,000 Deaths a Year. I didn’t die from my breast cancer surgeon’s medical error, but I did get a firsthand look at how these errors are glossed over by hospitals and insurance companies alike.

Short version: In March 2009, my breast cancer surgeon gave me a double mastectomy but missed the cancerous lump. I discovered the error a week after my surgery when the surgeon removed my drains and, reflexively, my fingers flew to the spot on my body where the lump had been and — gulp — it was still there. (Here is the blog post.)

My lump had been close to the skin, high on the breast. Six o’clock. The lump’s location meant I wasn’t a candidate for a lumpectomy. So, I chose a double mastectomy without reconstruction. Six weeks after my initial diagnosis, I had no breasts but the pea-sized lump of breast cancer still sat brazenly on my chest.

And so began my crash course in how to advocate for yourself in the surgeon’s office. In short, I refused to leave until the surgeon acknowledged his mistake, took accountability for it, apologized and scheduled a do-over mastectomy. (This is a big part of my memoir FLAT…and is way too long to detail here but suffice it to say it was a horrifying and traumatic experience.)

Two months later I got a lesson in how insurance companies deal with medical errors. Paperwork arrived in the mail showing my surgeon billed my health insurance company his full fee for the do-over mastectomy. I called the company to tell them they should deny the charge. After all, it was the surgeon’s mistake. Why should he profit from it? The insurance rep told me it wasn’t his job to parse what was or wasn’t a mistake. If the billing made sense, they paid it. And, just like that, my mistake was recast as a recision. In the records, my breast surgeon simply “went back for more tissue.” No one mentioned it again.

I was a health journalist. I interviewed three surgeons for the job. I chose the one with the most experience and the best credentials. I did everything I could possibly do, except control for human error. The NYT article reports that if medical errors were considered a disease it would be the third leading cause of death in the US behind heart disease and cancer. Whoa.

No one expects health care practitioners to be perfect but 250,000 deaths a year? We can do better.

The Futility of Pinktober

Every year, during Pinktober, I worry that we’ve lost sight of the reality of breast cancer. This year I have a writer crush on S. Lochlainn Jain, an associate professor at UC Santa Cruz and author of Malignant: How Cancer Becomes Us. In a few well-chosen statistics, Jain shows the heartbreak of breast cancer and the futility of our obsession with “the cure.”

“The numbers really are staggering. Just to take an example of one cancer: 200,000 new diagnoses and 41,000 annual deaths of breast cancer each year in the United States, a million or more American women living with it who have no idea they are ill. More than 6,000 women under the age of 49 dead of the disease each year — more than the number of AIDS-related deaths at the height of the crisis, and twice that of the annual deaths of polio at the height of that crisis. And yet the response has not been to reconsider the costs of our economic and environmental decisions but to concentrate of that elusive thing: the Cure. The promise of the curable disease, the triumphant figure of the survivor, and the rhetoric of hope all serve as part of the rhetorical work of maintaining a belief in the preciousness of each individual life. The bad faith, though, reveals itself in contradictions: the statistics built from drug trials on the one hand point out how far we are from a cure and on the other harbor the possibility that cure is possible. And yet, as researchers such as Robert Proctor argue, very little basic research on cancer is being done. One might reasonably conclude that the rhetoric of hope for a cure papers-over the actuality that after all these years, for many cancers chemotherapy treatments have improved very little, and they have improved survival rates only marginally, if at all.

This excerpt appears as a footnote in Jain’s essay “Living in Prognosis: Toward an Elegiac Politics,”

Double Mastectomy Decision: My essay in Slate

After my double mastectomy, I published an essay on Slate in response to Peggy Orenstein’s breast cancer op-ed that ran in the New York Times last week. You may recognize a few sentences from my last blog entry. That’s because this topic has been rolling around in my head for a few weeks. Journalists and medical experts who second-guess breast cancer patients’ treatment decisions are a thorn in my side. I’m a fan of medical evidence and a good doctor-patient conversation. But the tone of some of these recent articles is paternalistic and sexist.

Peggy points out that researchers have used the word “epidemic” to refer to  the number of women choosing to remove their healthy breast along with the cancerous one. Really? I’m sorry but Typhoid was an epidemic. The 1918 flu was an epidemic. AIDS was (and in many places continues to be) an epidemic. Women making gut-wrenching decisions about how they want their post-cancer bodies to look is not an epidemic — it’s a choice.

I welcome the conversation about why rates are increasing so dramatically, especially among young women diagnosed with the disease, but let’s do so with respect for the people involved and the complexity of the decision.

Why a Double Mastectomy? It’s Complicated

Last week a new study with an inflammatory headline went viral: “Double mastectomy ‘not necessary’ for most women.” The study, from the University of Michigan Comprehensive Cancer Center, found that 70 percent of women who had a double mastectomy following a breast cancer diagnosis did so despite a very low risk of facing cancer in the healthy breast.

What troubles me about this genre of breast cancer research is the finger-wagging tone. Full disclosure, I had a double mastectomy without reconstruction in 2009. I was 38. I knew the risk of cancer appearing in my other breast was relatively low, but I made the decision that was right for me. In choosing a double mastectomy, I was in the minority. Only 8 percent of breast cancer patients opt for double mastectomy. That means, 92 percent of us choose something else. So why does that 8 percent drive researchers to distraction?

I picture breast cancer researchers in their labs, their clinics, their meetings, scratching their heads and asking themselves, “why do these crazy ladies lop off their breasts? They obviously don’t have the facts. They are making an emotional decision based on fear and anxiety.” And, for some women, that might be true. They might not know that (for most) a diagnosis of breast cancer in one breast does not increase the likelihood of breast cancer recurring in the other breast. They might decide out of pure fear. But I’m guessing the real reasons why 8 percent of breast cancer patients choose a double mastectomy are much more nuanced.

My decision to have a double mastectomy was complicated. A big factor for me was not wanting to have one breast. It might sound silly to some but I didn’t want a singleton. I wanted to be able to wake up, pull on a t-shirt, and walk the dog. That didn’t feel like too much to ask. I didn’t want to have to wear a prosthesis just to feel “even.” Reconstruction, which solves this problem for a lot of women, was not a good option for me. Another factor in my decision was that my remaining breast no longer felt sexy. I feared it would become a lonesome reminder of a terrible time in my life. Plus, I wasn’t planning on having children or breastfeeding.

For me, a double mastectomy made a lot of sense. But my reasons were all very personal and, therefore, difficult to measure in a research setting. I’m guessing other members of the double-mastectomy club have equally complex reasons for making the decision we did. Why must researchers continue to spend good money trying to figure out why we weren’t more swayed by data? Got research money to spend? Spend it on saving women’s lives not second guessing our decisions.

 

Avon’s Charity Walk of Shame

Corporate-sponsored charity walks do a disservice to many women. Look what just arrived in my mailbox…a pinkalicious mailer from Avon guilting women into walking on my behalf. “Will you walk? Or will you walk away?” Brilliant way to push our collective guilt/shame button. Thanks Avon!

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Thanks too for perpetuating misinformation about breast cancer for your company’s benefit. That’s awesome! Surely your savvy marketing team knows that the 1 in 8 stat is misleading. If your mission is to educate women about breast health, why perpetuate bad information? Breast Cancer Action considers the 1-in-8 stat one of the Top 10 Breast Cancer Myths. Here’s what BCA says:

“This much-quoted statistic is an individual’s cumulative risk over an 85-year lifetime. It does not mean that at any given point, 1 of every 8 women has breast cancer. Rather, it means that if all women lived to be 85, one in eight would develop the disease sometime during her life.”

Shame on you Avon for using this misleading statistic to scare women into contributing to your cause.