Four years ago, I had a double mastectomy.

 

We don’t get to choose breast size. We don’t get to choose whether they are symmetrical or perky. We don’t get to choose whether breast-feeding will be easy or nearly impossible. We don’t get to choose whether cancer pops up in one or both of them

When faced with the cancer diagnosis – suddenly – I had some choices

Mind blowing

Was I happy about being faced with those choices? No – absolutely not. A cancer diagnosis is terrifying. But now, four years later, I’m darn happy with my chest – much happier than I ever was about my breasts

I had always wished for a flatter chest. One of my first vivid memories of feeling breastful was being looked up and down by my father and told I was going to be a regular Dolly Parton… with a gleam in his eyes, a huge grin, and a laugh. I think I was like eleven – maybe twelve

Ew. OK? Just EW. Big breasts are just not something that a parent should say – WOWZERS and imply that they’re something about which I should be proud. As if they or I chose the size of my breasts. … As if big breasts somehow made me worthwhile….

I remember thinking that these breasts were inconvenient and annoying. I remember thinking – what? They are going to get BIGGER???? And yes – yes, they did get bigger. I had many negative experiences with unwelcome comments (Jeez – I’m just trying to give you a compliment, he’d say) and stares and touches and pinches and grabs and more.

So often, as a teenager, I felt somehow controlled by my breasts. People stared at them. People touched them without my consent. My straight boyfriends (the best ones were the gay ones, truth be told) wanted to get their hands on them. My birth mother would tell me when I was unacceptably nipply. She would admonish me if there weren’t enough material between those nipples and the world. She only permitted me underwire bras, telling me that they were the only acceptable way to control my breasts. Because breasts needed to be controlled. Controlling my breasts extended to controlling me.

Today I have no breasts. In 2011, I received the news that I had triple negative breast cancer. Right at that first appointment with the breast surgeon, I felt confident in saying that I wanted a double mastectomy. His support of that decision never wavered. He asked me whether I would like to explore reconstructive plastic surgery etc… When I said no, he accepted that answer and simply moved forward with treatment planning.

Lucky for me, I had chemo before I had surgery. This was a major positive because I had time to think and rethink the surgical plan. Never once did I waver from the decision for a double mastectomy without reconstruction. My surgeon checked in with me a handful of times, with respect not challenge. I’m grateful for his approach, as he never demanded that I reconsider or seek permission from my spouse or make an appointment with a therapist (those things happen to breast cancer patients all the time).

In fact, most forgo breast reconstruction (Morrow et al., 2014). MOST. More than 50%. We have astonishingly poor access to data that could really help breast cancer patients make decisions around surgical treatment plans and breast reconstruction.

What data would I like to see? What data would help patients make informed decisions?

The data collected should be more informative. For example, the data should reflect the gender identity of the breast cancer patient – not just the sex assigned at birth. These are hard surveys to design, I am sure.

I think a database that could provide statistics regarding what surgical treatment plan people selected would be tremendously useful. While discussing options with a surgeon or sitting at home agonizing over single or double mastectomy…  Kind of like that cancer survival calculator. You enter things like your racial identity, gender identity, sex assigned at birth, fitness, weight, height, cancer details, and then you get a report describing how many people were similar to you, which options they selected, and an assessment of the outcome. That would be amazing.

 

Yes – longitudinal data – that would be AMAZING. Ask people to update their entries 2 and 5 years later, with ratings of how happy they are with their surgical outcome and what kinds of complications they’ve encountered. I know several athletes desperately unhappy with the consequences of implants or reconstructive surgeries involving moving tissues from one area to another. What fraction of athletes are happy or unhappy with reconstruction? What fraction of people feel their range of motion is compromised as a function of the surgical approach…. I don’t know the answers to those questions, but having information like that could help future patients make more informed decisions. Information like that could also lead to improved reconstruction techniques.

 

Every person is different, but I feel like the more I learn about the consequences of breast reconstruction, the more grateful I am that I don’t have reconstructed breasts. As I hear about the multiple surgeries often required to get a symmetrical result or to even handle complications that arise or to handle implant degradation over time, I am grateful that a flat result was the one I wanted most.

 

This new landscape of my chest is different. There’s a numb patch on the right side, near the sentinel node biopsy location. My chest doesn’t fill out shirts the way I sometimes wish it would. I mean, there are some shirts – t-shirts even – that simply look funny on me now. It feels a little awkward at times. Sometimes I feel people trying to figure me out. Sometimes people ask me rude questions about my body. They will ask – did you have – voice drops to a whisper – BREAST CANCER? Sometimes people express jealousy for my flatness – especially athletes – or pity for my flatness. Many claim they would go flat if faced with a breast cancer diagnosis or they would never go flat if faced with a cancer diagnosis.

So, how do I reclaim that landscape? Tattoos. I’ve spent quite a lot of time at the tattoo shop, working closely with an artist whose artwork I adore and who I trust to reclaim this chest of mine. With each new addition, I feel my chest becoming more and more me again. My full torso tree is currently in progress, and a photo shall be posted after my next appointment!

PS – four years after treatment, and I am still NED – that’s no evidence for disease – a lovely lovely acronym!

Reference: Access to Breast Reconstruction After Mastectomy and Patient Perspectives on Reconstruction Decision Making; Monica Morrow, MD; Yun Li, PhD; Amy K. Alderman, MD; Reshma Jagsi, MD, DPhil; Ann S. Hamilton, PhD; John J. Graff, PhD; Sarah T. Hawley, PhD; Steven J. Katz, MD, MPH; JAMA Surg. 2014;149(10):1015-1021. doi:10.1001/jamasurg.2014.548.

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About rleepenn

I'm a mom and a chemistry professor, and I love to ride bikes! On July 29th, 2011, I received the news that I have breast cancer. This is my blog....
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