reconstruction

Flat and Proud

I have zero tolerance for hiding. I came out to my father when I was 22. His response? “This can be our secret.”

Don’t worry — he and I have worked through it (hi dad!) — but his first reaction was to ask me to hide myself (to buy into my shame) to spare himself and others the discomfort of seeing my true self.

Fifteen years later, I was diagnosed with breast cancer, and I heard a hint of my father’s voice in the words of the plastic surgeon. He offered to reconstruct my breast by carving out a slab of my back muscle, wrapping it around my front, and tucking it over an implant, like a steak over a tennis ball. (Called a latissimus dorsi flap, the surgery is one of the most common reconstructive options after breast cancer.)

“Isn’t that back muscle doing something?” I asked.

“You’ll look normal in clothes,” he shrugged. “That’s all most women want.”

Really? Is that really ALL most women want?

(more…)

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. 

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.

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.

Breasts: More than meets the eye

My most recent post touched on some hot-button issues, so I’m going to take a moment to clarify. I didn’t mean to open fire on a woman’s right to choose reconstruction. What I am incensed about is a society that narrowly defines not only what choices women have, but also what choices women can envision for themselves. I take offense not at the choices women are offered within the structure but with the structure itself. I’m no feminist scholar (some of my best friends are and maybe they will chime in), but I think this touches on one of the core fractures between liberal and radical feminism.*  

More specific to my experience with breast cancer, I take umbrage with the fact that I consulted four surgeons—two breast cancer specialists, a general surgeon, and a plastic surgeon—and not one of them mentioned going flatchested as a viable “choice.” Instead, my “choices” were laid out like so many confections on a silver platter. Each and every item on the menu involved saving the tatas, and, as a good breast cancer patient, my job was to choose the one that looked the sweetest and not ask questions, especially regarding, say, pain, recovery times, or (god forbid) complication rates.

When I made my “non-choice,” I was treated more like a stubborn child who refused to eat her veggies than a well-informed woman who made a thoughtful decision about her health care. In refusing to play along, I felt dismissed as an anomaly. And I’m guessing I was.

Last month, in a short email exchange on the increasing number of women who choose reconstruction, Marisa Weiss, MD, founder of BreastCancer.org and a leading breast oncologist, wrote, “Most women whose surgeons bring it [reconstruction] up will pursue it.” For me, this observation begs a more complicated question–not about choice but about framing. How are the surgeons bringing up the topic of reconstruction? Or even of lumpectomy versus mastectomy? How do their own biases weigh into the discussion? Physicians are only human. They can’t possibly divorce their own loaded feelings about breasts from conversation with their patients. Or can they?

A couple of years ago, I posed similar questions regarding surgeon bias to Dale Collins, MD, director of the Comprehensive Breast Oncology Program at Dartmouth Medical School. Collins is a plastic surgeon who specializes in breast reconstruction. “The reality is that doctors push and pull in both directions, and they will typically pull patients in the direction of their bias every time,” she says. Then she added, “And a lot of surgeons are men, and men presume that women don’t want to part with their breasts.”

Whoops, now I’ve gone and gotten all down-with-the-patriarchy on y’all. And didn’t you just know it was coming? After all, I am a man-hating lesbian separatist. But, seriously, this circles back to my point about questioning the structure, not a woman’s right to choose her own chest. I don’t want to take away a woman’s breast implants or deride her desire to replace the breasts she lost to cancer. (God knows I miss mine every day.)  I just want to see the choice to go “flat-and-fancy-free”  right next to the choice to get triple-layer tatas with fake nipples on top on breast surgeon’s dessert menus. Because if a woman truly felt that she wouldn’t be seen as “less than” for being breast-free, I can’t help but wonder if more breast cancer chicks wouldn’t gravitate toward the flat side.

 

 

*Special thanks to my sweetie for helping me to think this stuff through during our many long walks together. You are amazing in every way.