I am a two-time breast cancer survivor. My first diagnosis I had left chest radiation that left me with tethered tissue that affected my range of motion and ability to sleep on my left side. Because of this, DIEP flap was the only safe breast reconstruction option for me. Had I had implants along with an expander placed first, I ran a very high risk of infection and further breakdown of the tissue due to the radiation. This is my letter to CMS preserving women’s right to choose DIEP flap.
Instead, my highly skilled micro-surgeon removed a great deal of the scar tissue that resulted from the radiation and replaced it with new, soft tissue from the DIEP flap he performed on me twelve years after my first diagnosis. I now lay comfortably on my left side. Additionally, my range of motion is greatly improved.
Patient Stories to CMS
I am but one story. After my DIEP flap I opened a nonprofit to educate people about all options for breast reconstruction after mastectomy. I know and hear frequently in the breast cancer community I serve, that DIEP flap is the only and safe surgery they can choose for several medical reasons. On my private Facebook group, I asked patients the question, “Why was or is DIEP flap the best option for you?”
I am not able to share all of them because of the number of women who generously shared their story. So, I have selected a few. Consider these their letter to CMS preserving their right to choose DIEP flap.
- For me it was the only option. I had 13 rounds of chemo and 33 rounds of radiation for stage 3 inflammatory breast cancer. Doctors could not use my radiated skin. I am so grateful they could use the skin from my stomach to make me a new breast.
- After three failed attempts at breast reconstruction using implants, I am elated to have the DIEP flap procedure as an option. Over twelve years, I had already had to replace my implants three times due to capsular contracture, which resulted in many months of pain, lost sleep, limited range of motion, and nerve damage. While I am only five days out from my DIEP procedure, my teen daughter is already amazed at how different my breasts feel. She was a toddler when I went through treatment and my initial implant reconstruction has always known that hugs from Mom felt different than hugs from Grandma or friends’ parents. When I gave her a gentle hug this afternoon, she commented that the hard rocks were finally gone from my chest. Even without radiated tissue, my body never accepted or healed correctly around breast implants.
- After my double mastectomy, I lost one of my tissue expanders to infection/complications. Then my oncotype score indicated I would need chemotherapy and radiation. When radiation increased the chances for complications and capsular contracture, it became clear that expanders to implants was not the ideal choice for my body. I am young and reconstruction surgery is important to me. I choose DIEP flap and will need it in 2024. I greatly need CMS to reconsider!
Women’s Right to Choose DIEP Flap Breast Reconstruction
These are mothers, working women, who are currently paying for their insurance. Why then, would the most advanced and for many the ONLY option, for breast reconstruction, be taken away because of the elimination of the S-codes covering an exceptional, advanced, and highly successful life-changing surgery for those affected by breast cancer?
I serve a global population of over 11.8 thousand people of all walks of life, ages, demographics, and stages of breast cancer. I deeply regret that in the U.S. we potentially face taking this breast surgery option away from people who are paying for insurance.
My Request to CMS Regarding DIEP Flap Coverage
I want to speak directly to CMS members. I hope you are never in our shoes and must make the decision so many of us made to reconstruct a body part lost to this disease. We feel fortunate that we live in an era of advancement in surgical options. This surgery for many, like me, was life changing. This is why I am writing a letter to CMS preserving women’s right to choose DIEP flap.
Consider strongly the “WHY” of your decision. In the end, will you be at peace knowing you made the decision that is best for breast cancer patients? I want to believe you will.
I ask on behalf of the breast cancer community I so proudly serve for CMS to reconsider your decision to eliminate the S-codes. Preserve full patient access through insurance to cover DIEP flap and other autologous, muscle-preserving reconstruction. Allow U.S. microsurgeons to bill insurance for these more complex procedures that require additional training for them to serve us, their patients.
This is an access to care and healthcare issue and is in large part affecting women. Let’s not let that happen and give us the right to choose. I submit my letter to CMS.
Respectfully yours,
Terri Coutee
Founder/Director
DiepCFoundation.org
Well said, dear friend. Well said!
Lisa, coming from you this is a HUGE compliment. I am honored you read the letter to CMS. It will be important to keep the momentum going to preserve insurance coverage and access to care for DIEP flap breast reconstruction for all those who follow us. Thank you kindly, my friend, for your lovely comment. ~ Terri