breast cancer

A Happy Pink Story: The World Wants What It Wants

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In his essay “On Homecomings” for The Atlantic Ta-Nehisi Coates wrote was about his deep longing to move back to his old Brooklyn neighborhood and how his plans were thwarted by celebrity-chasers. About the mining of his privacy for a gossip rag, he wrote: “If the world wants a ‘writer moves to Brooklyn Brownstone,’ story, it’s going to have one no matter your thoughts.”

On the eve of Pinktober, this sentence struck me hard because I’ve had a similar experience with breast cancer.

The world likes a breast cancer survivor with good-as-new breasts, but that is not my story.

I chose not to reconstruct because I didn’t want to sacrifice a back muscle to create what the plastic surgeon referred to as “a breast-shaped mound.” Now, seven years later, I’m not arguing against reconstruction. I believe women need to be fully empowered to make any and all choices about their bodies. But a fully informed choice is predicated on having all the options.

A lot of women take comfort in the happy pink story “no matter your thoughts.” But I can’t help but wonder how many women don’t yearn for a story with an alternative ending. In the weeks after my breast cancer diagnosis, I saw four surgeons and not a one mentioned going flat was an option for me. Going flat isn’t every woman’s choice but it needs to be on the menu.

Like fairytales reimagined with strong girls who don’t need to be saved by a prince, I’m hoping my story about a breast cancer survivor who didn’t need to re-create her breasts to feel whole again, to feel like a woman again, will be a refreshing update to a stale ending.

3 Steps Before You Walk

Cause marketing is a $2 billion dollar business. That’s a lot of moola. Before you sign on to a charity walk it’s important to know whether your donation will pay for extra balloons at the finish line or something more meaningful.

“When you sponsor someone for a charity walk, you’re really writing three checks — one for the charity, one for the event-management company, and one for the benefits the walker receives, the T-shirt, the massages, and the meals,” said a spokesperson from the American Institute of Philanthropy, a charity watchdog group. “If it’s a very costly event, but you’re happy because you got some great perks, that’s fine. But, if you want to help the cause, you should find out how much will be left over.”

Last month Breast Cancer Action published 4 questions to ask before you walk for breast cancer.

Here are 3 more steps you can take to find out where your donation will go.

Rate of Growth of Cause Marketing from CauseGood

Rate of Growth of Cause Marketing from CauseGood

  1. Find out how much of your contribution will benefit the charity directly. According to the Better Business Bureau’s Wise Giving Alliance, “at least 50 percent should be spent on programs and activities directly related to the organization’s purposes.”
  2. Ask yourself if the charity’s goals are clear? What tangible results have they achieved in the past year, the more specifics the better. Is the charity’s mission specific, like providing wigs to women receiving chemotherapy, or vague, such as eradicating breast cancer.
  3. Ask how successful is the charity in meeting its goals? If a charity spokesperson can’t tell you what they’ve done to forward the cause lately, choose a charity that can.

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.