no reconstruction

One Woman’s Story Can Change the World

Two weeks ago my investigative feature about surgeons violating breast cancer patients’ requests to go flat went up on Cosmopolitan.com. In the days following, my social media channels were inundated with #MeToo testimonies from breast cancer survivors as well as messages from readers and supporters who had no idea that women’s bodies were being abused and disrespected in this way. I have been buoyed by supportive messages, tweets, and posts. Thank you!!!

The highlight was an email I received yesterday from Dr. Patricia Clark, a nationally recognized breast surgeon in Arizona who was quoted in the piece. (For context: Dr. Clark travels the country teaching surgeons how to make women truly flat after mastectomy. She is my new hero.)

Dr. Clark gave me permission to share the email she wrote me:

Hi Catherine,

I thought you’d like to know…I was speaking at an international advanced oncoplastic surgery course over the weekend and your article was put up on the screen by the surgeon doing the opening introductory speech emphasizing respect for patient choice. It was presented and referenced several times during the conference with the photo of the patient [Kim] holding the sign demanding surgeon accountability…

My heart skipped a beat when I read her note. I was in my (parked) car. Rain pounded on the roof. A chill crept through my body as water soaked through my jeans, wet from dashing to my car through a downpour (the last gasp of Hurricane Florence as it moved through Massachusetts).

In my 20+ years as a women’s health journalist, I’d never felt more gratified than I did in that chilled, rain-soaked moment. I thought of Kim Bowles, the brave, badass woman who refused to go quietly. Of the hours she and I spent on the phone, trying to get the story right. Of the power of the media to shine a light of truth on women’s stories.

To amplify women’s voices so they were heard by a room full of international surgeons capable of affecting change on a global scale. To imagine even a single doctor who may feel compelled to listen closely, to attune to a woman’s voice, hear her autonomy, and respect her choice, made all I’ve been through as both a patient and a women’s magazine journalist worth it.

Thank you to those who trusted me with your stories: Kim Bowles, Becky Fitz, BethAnne King and so many more who shared their painful truths with me but, due to space limitations, weren’t named in the story. You are also my heroes.

Yesterday, Kim Bowles and I sat down for a joint interview about the Cosmo story and about my new memoir, FLAT. We spoke to the smart and engaging Megan Harris, the producer/director for The Confluence, 90.5 WESA, an NPR station in Pittsburgh, PA. (The interview was recorded, and I will post a link when it goes live.)

In the meantime, stay tuned for more news from me and Kim as we have some exciting things in the works!

The Beauty of Going Flat

Ten  years ago, when I bucked four surgeons’ advice and decided NOT to reconstruct, I didn’t know a single other cis-gendered breast cancer patient my age who’d made that choice. I couldn’t help wondering “What was wrong with me?” that I craved simplicity rather than reconstruction. To feel the softness of a well-worn tee shirt against my skin? To use my back muscles to support my spine rather than to buffer an implant? To be set free from extra surgeries and screenings?

Nothing was wrong with me.

Today, I’m in the company of thousands of women who are reclaiming their bodies and their lives from cancer. Emily Hopper, 32, is a force of nature. She is a breast cancer advocate, an artist, and a mother.

“Not having breasts gives me a sense of freedom I never knew I wanted. In some ways it feels like a new level of womanhood,” Emily Hopper. 

Emily is the owner-creator of EMPOWERHAUS, an online business whose mission is to embolden and inspire women, breast cancer patients, and supporters of all stripes. We met in an online community for “flatties” and became fast friends because she is wicked smart, hilarious, and ass-kicking.

Recently, we talked about living our best flat life for The Daily Beast. Take a peek and let me know what you think. And keep an eye on Emily cause this chick is going places!

 

The Decision to Go Flat

Recently, Florence Williams interviewed me for her Audible original series podcast Breasts UnboundFlorence Williams is a science writer extraordinaire and author of several award-winning books including Breasts: A Natural and Unnatural History (W.W. Norton 2012).

Click here to listen. My segment is 22 minutes into the podcast. I know not everybody’s got that kinda time, so I’ll see about getting a transcript. But, in the meantime, here are a few of my talking points.

  • My hope in writing FLAT was (is) to expand the conversation around options post-breast-cancer diagnosis. When I was diagnosed in 2009, I was pressed against cultural norms and assumptions of the importance of breasts and other people’s ideas about “what makes a woman.”
  • The predominant (and patriarchal) assumption is that breasts are paramount to a woman’s sexuality. Therefore, folks go straight from the breast cancer surgeon’s office to the plastic surgery consult without question. Patients are rarely encouraged to think about what they want for themselves versus for their partners and/or so they can pass in public as a woman untouched by cancer.
  • I applaud folks having the choice to reconstruct and the fact that health insurance companies are required to pay for reconstruction post-cancer. But breast cancer patients can’t make a fully informed choice unless they know their options. For example, I saw four different surgeons. Each described various reconstructive scenarios. Going flat was never mentioned.
  • Also never mentioned by the four surgeons were the risks of reconstruction, such as the high rates of complications and infections. Even under the best circumstances, most implants must be replaced every 8 to 10 years. A breast cancer patient who chooses implants as part of her reconstruction consigns herself to a lifetime of maintenance. This is no small thing.
  • Almost 40 percent of women in the United States who undergo mastectomy for breast cancer do NOT reconstruct, according to a 2014 study published in the Journal of Clinical Oncology. That’s 4 in 10 women. Other studies suggest the number is even greater. Yet, when we see representations of breast cancer survivors in the media they ALWAYS have breasts. Where are the 40 percent? Why are they invisible?

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.