As Breast Cancer October comes to a close, we want to share the story of an amazing woman who is impacting the lives of breast cancer patients daily through advocacy and her first-hand experience with reconstruction following mastectomy. Meet Terri Coutee, a daughter, sister, wife, two-time breast cancer survivor as well as the founder and director of the non-profit, DiepCFoundation. To learn how Terri is using resilience and compassion to help educate and support patients with their surgical options, read on.
We read that you beat breast cancer not only once, but twice! Can you please share your experiences around the disease?
Getting a breast cancer diagnosis in a phone call or sitting in the office of your healthcare provider is something no one wants to experience. But, I did twice. Each time had its unique challenges and difficulties. Neither time was easy. The first time I found the lump myself. The second time was through an annual mammogram. My first diagnosis was in my left breast. The second diagnosis was a recurrence in my left breast and a new primary in my right breast.
How was having breast cancer different the second time around in comparison to the first?
The first time I was diagnosed, I had two lumpectomies to achieve clear margins. I then endured eighteen weeks of grueling chemotherapy. I ended up in the hospital, lost my hair, my color, and a lot of my strength. I have always been a very active person, but it was difficult to even carry the laundry basket from one room to the next. I followed chemotherapy with six weeks of daily radiation and five years of Tamoxifen.
The second time I was diagnosed, twelve years later, I had to have a double mastectomy. It was devastating but my breast surgeon gave me hope! She told me I could reconstruct my breasts using my own tissue with a procedure called DIEP flap breast reconstruction. I personally did not want implants or anything foreign in my body, and that is why I chose to use my own tissue. While I was recovering from my double mastectomy and waiting on lab results, I began to fervently research the best microsurgeon I could find to perform my breast reconstruction.
How did you make your decisions around treatment and surgery? How do you feel about your decisions now?
I have zero regrets about my decision to have DIEP flap breast reconstruction. However, it took homework on my part. I researched curriculum vitae, qualifications, and success rates of plastic surgeons who performed DIEP flap procedures. I realized I may have to travel to get the best results. I found what I felt was my “just right” surgeon. I spoke to women who had gone to this practice and asked them about the process and how they felt about their own results.
Can you explain your experience around DIEP flap reconstruction? Did you get a second opinion before going through with this procedure?
Immediate DIEP flap is recommended if possible. It reduces scarring and allows a woman to wake up with breasts. In my case, I could not do that and had delayed breast reconstruction. I suffered from the psycho-social devastation of breast lost during the seven months I was waiting to have my DIEP flap. I felt very uncomfortable appearing in public wearing my prosthetic breasts. However, I want women to know, I found a highly successful microsurgeon. I did my homework and because of that, my results are beyond my expectations. I felt I was in the hands of an artist and love my new breasts!
How did having breast reconstruction change you?
Breast reconstruction changed me in ways I could have never predicted. Just a few short weeks after my breast reconstruction, I began writing a blog about my experience. I connected on social media and built my platform, DiepCJourney.com. I opened a closed Facebook page that now has over 2,200 members supporting women and men going through breast reconstruction.
What would you say to a woman recently diagnosed with breast cancer? What suggestions or advice would you offer around treatment and surgery?
The advice I have for women recently diagnosed with breast cancer is, don’t be afraid to ask for help or find a support group that will provide positive support. The other piece of advice I want to emphasize is this: If you are faced with a mastectomy, ask to have a well-qualified, board certified plastic surgeon as part of your health care team. You may or may not want breast reconstruction, but how will you know if you don’t have the conversation?
What is the inspiration behind your DiepCFoundation? How did it come to fruition?
The inspiration and mission of the nonprofit, DiepCFoundation.org, started in 2016, is to provide education and resources to empower women and men with information to make an informed decision about options for breast reconstruction after mastectomy. We provide educational YouTube videos at DiepC Foundation to assist viewers with information about breast reconstruction. When I found out through research that less than 25% of women and men are given their options for breast reconstruction, I felt it was time to make a change. That is when I opened the foundation.
Do you have any upcoming events or projects you would like to share with us?
I am writing this at a time when I am transitioning in a move to the state of Washington. I am beyond excited about the current connections I have there with the endless possibilities for educating more women and men about their reconstructive options. I will settle into our new office space this November and start planning for all of our upcoming Foundation events in 2019. We are very excited!
Are there opportunities for our community to contribute and engage in DiepCFoundation? If so, how?
If anyone is interested in the education DiepCFoundation provides, I am happy to arrange a public speaking engagement or an event that will provide breast reconstruction information to an organization. We are always looking for those who wish to donate to the Foundation since donations are tax deductible and our needs are growing as the Foundation expands its outreach.
If you or someone you know is considering a mastectomy or has undergone the procedure, you can join the DiepCFoundation’s private Facebook Group here – a closed group where one can discuss all options for breast reconstruction with other patients and have the advantage of speaking with experts in the field.