breast cancer

Numbness and Reconstruction

Last week the NYT ran another feature by Roni Caryn Rabin: After Mastectomies, an Unexpected Blow: Numb New Breasts. Roni is one of the few mainstream journalists asking tough questions about breast cancer realities. Last fall, she penned a thought-provoking piece about folks who go flat post-breast cancer. Now, her first follow-up is a well considered examination of a common problem – numbness after reconstruction.

from the NYT

Background: According to the NYT, since 2000 the number of women undergoing breast reconstruction after breast cancer is up 35 percent. In 2015, 106,000 women had reconstruction. Many breast cancer patients report their surgeons did not make it clear that their new breasts would feel numb.

As one can imagine, numbness can be physically and emotionally disorienting for many women. Roni quotes women who’ve injured themselves and not realized it, women who can no longer feel the touch of their children and lovers, and women who feel like they were misinformed when their surgeons told them their breasts would “feel” natural.

Then she digs deeper into that key word: FEEL

Roni spoke to surgeons who explain that when they use the word “feel” in pre-surgery conversations – “as in your new breast will feel natural” – what they mean is that the reconstructed breast(s) will feel natural to other people (aka: men). They aren’t talking about how the breast will feel to the woman herself.*

Doctor-patient convos still centered on what “feels” good to men

Many women don’t realize until after reconstructive surgery that their new breasts will feel numb forever. Some women do regain partial sensation in reconstructed breasts but full sensation is extremely rare due to nerve damage.

My issue is not with numbness. (And, full disclosure, my flat chest has full sensation.) And, as an aside, I’d be curious to know know if flat-chested women are more likely to regain sensation than women who reconstruct.

My point is that plastic surgeons are framing the conversation in terms of what will feel best for men.* And that’s eff-ed up. As I’ve been saying for ages, breast cancer patients can’t make well-informed decisions without accurate and unbiased information. Language that privileges a man’s experience of a woman’s body over her own is biased (to put it mildly).

A woman’s decision to reconstruct is a big one. All reconstructive options require multiple surgeries (even so-called simple implants need to be replaced every 7 to 10 years). Breast reconstructive procedures have unusually high rates of complications, including infection, implant rejection, and lasting pain.

I’m guessing most women would weigh the reconstruction decision differently if they knew in advance their new breasts would feel numb, if their surgeons were able to reframe the conversation around what the new breasts might feel like to the woman herself, not to the man in her life.*

Only when women have complete, accurate, and unbiased information can they make a decision about reconstruction with a clear-eyed expectation about what it will feel like to live in their post-surgical body. Because they are the ones who will be feeling it 24/7 for the rest of their lives.

*In my world, lots of cis-ladies and non-gender-conforming folks touch breasts, but, in the mainstream medical world, the only folks thought to touch women’s breasts are cis-, het-men. 

What’s Missing from the Mastectomy Conversation?

screen-shot-2016-10-28-at-10-48-20-am

 

For Pinktober Self Magazine featured photos from AnaOno Intimates, a company that makes lingerie for women who’ve had “breast cancer-related surgeries.” When the article came across my Facebook feed I clicked because, YES, of course I want to celebrate a company making bras and undies for breast cancer survivors!

But when the first gorgeous, gauzy photo of a woman popped up on my screen my heart sank. Her lovely lingerie-covered breasts looked nothing like my post-mastectomy body. I slowly began to scroll through the five portraits. “Please, please,” I muttered, “please just let one of these women be flat.”

Nope. Each of the five women in the article had a pair of full, lovely, curvy breasts.

Surely, I am not the only breast cancer survivor who is hungry for representations of women proud of their misshapen bodies. Nearly 40 percent of women in the United States who undergo mastectomy for breast cancer choose not to reconstruct, according to a study published in February 2014 in the Journal of Clinical Oncology. That’s 4 in 10 women. Other studies suggest the number is even greater. So where are these women? Are they in the self-congratulatory pages of Self Magazine? No.

Can we please stop rubber stamping homogenous femininity onto the bodies of breast cancer survivors?

The failure to portray a full spectrum of survivorship, in my mind, is not AnaOno’s because the company does have a picture of a flat-chested model on its site. The failure belongs to the magazine. Once more, a major women’s magazine narrowed its vision to see (and show) only women who chose full-on reconstruction. I’m a magazine journalist, I get it. Visibility is good. But I just have one request: can we PLEASE broaden the spectrum of what we make visible?

Gene Tests & Chemotherapy’s “Gray Zone”

Human breast tumor.

Human breast tumor.

I’ll hazard a guess that all cancer patients would skip chemotherapy if they could. The hazy hours in the infusion suite, the body-numbing fatigue, the brain fog, the baldness. And that’s just the short-term effects. Chemo’s toxic legacy can lead to permanent nerve damage, heart failure, and even other cancers, such as leukemia.

So I was heartened to see this week’s headline in the New York Times “Gene Tests Identify Breast Cancer Patients Who Can Skip Chemotherapy, Study Says.”  The reporter, Denise Grady, told of a new study validating the usefulness of genomic tests, gene tests that measure markers of tumor activity and aggressiveness. “The so-called genomic test measures the activity of genes that control the growth and spread of cancer, and can identify women with a low risk of recurrence and therefore little to gain from chemo.”

But my optimism quickly faded. These weren’t new tests. Or a new breakthrough. Instead this was research done on existing genomic tests, the ones that doctors have been using for the past decade. The same type of test performed on both of my breast cancer tumors. While I applaud the much-needed research, I wish the headline felt more apropos.

I was diagnosed with breast cancer twice. First in 2009 at age 38 and again in 2010 at age 39. Because I was under 40, my insurance company covered genomic testing. (I was lucky.) Like the majority of breast cancer patients, my tumor was hormone sensitive and her2 negative, making me an excellent candidate for the tests. My doctors assured me the results of this high-tech gene test would clarify treatment decisions, especially in relation to chemotherapy. Do I or don’t I steep my body in a toxic chemical brew?

For two weeks, I pinned my hopes on this test. How could I not? The results could be a “get-out-of-jail-free card.” One test could save me months of suffering and god only knows what kind of long-term ill effects. Even if the test showed an aggressive tumor at least it would clarify my treatment plan. “Full attack!” Was easier to swallow than a wishy-washy “you may benefit, but you may not.”

My greatest fear, next to death, was making an ill-informed treatment decision I’d come to regret. I clung to my doctor’s promise that the genomic test would mitigate that risk.

And so, when my oncologist gave me the results, I didn’t know how to process his proclamation that my tumor was in the “gray area.” My cancer was neither the most aggressive nor the most innocuous. It was neither the straight-A student nor the drop out. My tumor was a solid C+. If my tumor woke up and decided to apply itself, it could kill me. But chances were good it might nod off in the back of the class.

I got this middle-of-the-road result not once but twice. The first time I skipped the chemo. The second time I signed on with equal parts gusto and terror. But, even with the gene tests, my decision came down to a coin toss.

Am I hopeful that these tests will save tens of thousands of women the pain and suffering that is chemo? Yes. More information is always better than less. Do I think a newspaper headline, even an article, can capture the emotional and scientific complexities of chemo’s risk/benefit analysis? No. With all things, even fancy genetic tests, your milage may vary and mistakes will be made.

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,”

Mammography’s Failings: Rage Against the Machine

I was dismayed but not surprised by the recent news of mammography’s failings. As most of you know, per the NYT “one of the largest and most meticulous studies of mammography ever done…added powerful new doubts about the value of the screening test [mammography] for women of any age.”

But what shocked my socks off was the headline appearing in the same paper less than a week later “A Fresh Case for Breast Self-Exams.” The upbeat article highlighted what the writer called the study’s “nugget of hope,” which was that physical breast exams may be “as good as or better than regular mammograms.”

I hear the ’80s calling. They want their breast cancer screening method back.

Previous studies indicate breast self-exams are no better than mammography when it comes to stemming the tide of breast cancer deaths. I covered the topic for Time in 2008. The Cochrane Collaboration (an international organization that evaluates medical research) had just reviewed studies of breast self-exam that involved nearly 400,000 women. Their conclusion? Breast self-checks had no benefit. 

So, before we roll back the clock, before we go back to touching our breasts out of fear, before we give women deja vu, I’d like to hit the pause button.

Can we all please take a collective moment of silence to mourn the failed promise of mammography?

Regardless of whether you choose to believe in mammography (like Amy Robach over at ABC) or you are a dubious science reporter twice screwed by breast cancer (like me), last week’s news was a devastating blow.

Then I’d like to break the silence with a giant primal scream. Because when I think of the tens of billions of dollars spent chasing the “early detection myth,” I can’t help but think of how those billions might have made a difference for the hundreds of thousands of women who are no longer with us. And that makes me hoppin’ mad.

So. Please take a moment of silence and then follow it up with a big scream.