For Patients Facing Mastectomy, Expectations vs. Reality
Women have historically faced an uphill battle to have our bodily autonomy respected, and those of us facing mastectomy for breast cancer can feel particularly vulnerable. Our lives have just careened sideways with our diagnosis, and we can experience severe physical challenges while making complex breast cancer treatment decisions. The fact is that the importance of advocating for yourself rises along with the hardships you must endure.
Some patients, in particular those who choose to forgo breast reconstruction, may be faced with a surgeon who either devalues their decision or doesn’t fully understand it.
My Story of Flat Denial
When I was 35 years old, I was diagnosed with aggressive breast cancer stage IIIa after finding a lump while breastfeeding. I decided on a double mastectomy with no reconstruction. And I hired a plastic surgeon to do a “smooth flat” closure.
I wanted to be “one and done.” I had no interest in breast reconstruction options, and I knew the risks involved with multiple surgeries. All I wanted was to get back to my normal life caring for my children, ages 3 and 1 at the time.
I had two lengthy consults with a plastic surgeon, and I understood that he agreed to make me flat. But as I was lying on the operating table, I heard him say, “I’ll just leave a little extra in case you change your mind.”
When I awoke, it was immediately clear excess tissue had been left behind. The entire inframammary fold and the wraparound tissue remained under my arms.
I was devastated.
It took me over a year to be able to put a name to what had happened to me. I finally settled on what I term “flat denial”: when a surgeon’s actions deny their patient a flat mastectomy result, whether through misalignment of expectations, lack of training or intentional disregard. As I searched for understanding, I learned that I was not alone.
This led me to found my patient advocacy organization, Not Putting on a Shirt. Our mission is to advocate for satisfactory cosmetic outcomes – as agreed upon by the mastectomy patient and surgeon(s) – for those who choose to go flat. We inform and support patients, demand increased accountability for medical professionals and institutions and collaborate with patients and their surgeons to establish resources and protocols that will make a difference.
We believe that a woman knows her body, mind, heart and circumstances better than anyone else – and that the reconstruction decision belongs to the individual.
How to Ensure Your Decision to Go Flat is Respected
Communicate your decision and your expectations to your current surgeon. Pay close attention and evaluate their response. Do they seem to accept and respect your decision to go flat? Or do they try to talk you out of it or make statements about hedging your bets “in case you change your mind”? If there’s pushback, it may be time to consider a new surgeon.
If they seem unsure if they can make you flat in a single surgery, ask them if they’d consider bringing on a plastic surgeon. Plastic surgeons are specially trained to create aesthetically pleasing results. Be very specific in your discussion so there is no room for miscommunication.
Questions to Ask Your Surgeon(s)
- Have they performed flat mastectomy closures for previous patients? Ask to see photos of their work. If they are inexperienced, you may want to find another surgeon.
- Will your surgeon(s) be able to complete the job in one surgery, or is it likely that you will face additional surgery?
- If you are large breasted or significantly overweight, how will your surgeon address these challenges?
- Should you expect concavity, and how will this be addressed?
- How will they avoid “dog ears”? These are areas of protruding excess tissue at the lateral end of the main incision (under the arm).
- A single incision may be insufficient to create a flat contour. Plastic surgeons commonly rely on y-shaped incisions for this reason. What type of incision will your surgeon use, and why?
- How will they account for gravity? Will they mark you up in a sitting position either before or during the surgery?
Guidelines for Documenting Your Decision
Make sure that your decision to go flat is documented in your medical record. We recommend the following steps:
- Bring a support person to your surgical consults – ex. spouse, partner, family member, or friend.
- Provide your surgeon with pictures that represent your desired flat results and ask they be included in your medical record for reference prior to surgery.
- Have your surgeon confirm your wishes in writing. Write up a summary of what was discussed in consult and email it to your surgeon. Ask that they respond confirming that this is correct. This will alert you both to any misalignment in expectations.
- Ask if your surgical consent form can specify “flat.”
- Trust your intuition. If at any point, you suspect that your surgeon may not produce your desired result, find a new surgeon.
It isn’t easy to advocate for yourself when you are dealing with cancer treatment, but it’s worth it. This is your body, and you deserve to have your reconstruction decision respected.
Kim Bowles is a scientist, science instructor, mother of two and founder of Not Putting on a Shirt, an advocacy organization working to ensure that women who forgo breast reconstruction have results they can live with following mastectomy. Kim has been featured in Cosmopolitan magazine and on the Today Show. She is also a founding Board Member at Flat Closure NOW, an education and advocacy group dedicated to #puttingflatonthemenu.