Choosing Not to Reconstruct

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?

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.

 

Going Flat: The Choice No One Talks About

Why does no one talk about going flat?

I watched the Angelina Jolie breast cancer coverage the same way I watch scary movies — with my eyes covered. As I peeked at the news through fanned fingers, I was pleasantly surprised at how everyone handled themselves. (I’ll save my thoughts on the portrayal of “celebrity madonna figure cuts off breasts for the children of the world” for another day.)

My critique is twofold: One is that the discussion glossed over the pain, complication rates, and loss of sensation across the entire chest (not just the nipples) that reconstructive surgery entails. Two is that there is a far less complicated way to move past a double mastectomy that no one ever talks about: going flat.

Of course, Jolie’s livelihood relies, in part, on her breasts. So I can’t imagine that was an option for her, but it is an option for other women who are considering double mastectomy.

The “save the rack” mentality shared by so many in the breast cancer community can make it difficult for women to see a way forward that doesn’t involve reconstruction. In the weeks following my breast cancer diagnosis in 2009, I saw five surgeons. Each one approached me with the assumption that I wanted a new breast at any cost. (More on that in Part 2.)

As a science writer who specializes in women’s health issues, I’ve written extensively about breast cancer. As a patient, I saw how easy it was to go down the road to reconstruction. But I can also tell you that road is paved with the good intentions of doctors and pockmarked with huge piles of shit, most likely left by all those ponies and unicorns prancing around inside the minds of plastic surgeons and women alike.

As I yearned for balanced coverage, I was excited to see last week’s article in The New York Times “No Easy Choices on Breast Reconstruction.” The paragraph below tiptoes as close to the truth as any I’ve seen in mainstream media:

Even with the best plastic surgeon, breast reconstruction carries the risks of infection, bleeding, anesthesia complications, scarring and persistent pain in the back and shoulder. Implants can rupture or leak, and may need to be replaced. If tissue is transplanted to the breast from other parts of the body, there will be additional incisions that need to heal. If muscle is removed, long-term weakness may result.

This paragraph echoes what I’ve been told by dozens of breast cancer surgeons and patients alike. I also experienced the imbalance firsthand. None of the plastic surgeons I consulted said anything about complications, pain, and the possibility of muscle weakness. No one asked if I had a history of back pain (I do) or fused vertebrae (I do) both of which may increase odds of complications, like chronic muscle pain and reduced mobility. The public hears a lot about successful reconstructions, like Jolie’s, but we rarely hear the stories of women who are disfigured and debilitated by reconstruction.

Recently, I was assigned a feature about breast reconstruction for the digital magazine VIV. In that piece, I strove to reflect something more akin to reality. The final magazine feature included most of the following facts and figures:

  • The majority of women—55 percent—don’t reconstruct at all; they choose to either to wear a prosthetic or go without.
  • Women who have immediate (versus delayed) reconstruction are 2.7 times more likely to have a major complication, like tissue death, and are less satisfied with the final result.
  • Among women who choose implants, 30 percent will have complications, such as a hardening of the tissue around the implant (called capsular contraction) in the first year. Within four years that number may exceed 50 percent.
  • The Food and Drug Administration advises women with silicone-filled implants to get an MRI every two years to check for leaks. Not all insurance companies pay for the follow-up scans, which can easily cost a thousand dollars or more.
  • Tissue transfers are extensive surgeries with long, arduous recoveries. They require up to 9 hours in the operating room and up to a week in the hospital, including a day or two in intensive care to monitor blood flow to the new breast.
  • Tissue transfer studies are rare, but in one well-designed trial, 36 percent of women who underwent the most common tissue transfer surgery (called a TRAM flap) had a major complication.
  • A study published in 2010 in the journal Annals of Plastic Surgery found that many women who had tissue transfers felt ill-prepared for the loss of muscle strength, numbness, and extent of scarring.

And, call it personal bias, but I found it reassuring that long-term studies show that 5 and 10 years out, women who had a mastectomy without reconstruction were thrilled with their decision.

I’m glad that Jolie is inspiring women to get tested. The public needs to see smart women empower themselves to get information and act on it. I just wish women had a greater variety of role models to choose from in this realm. Women who chose less-invasive options and are living happily without boobs.