When a woman or man diagnosed with breast cancer must remove their breast tissue, 23 percent of them aren’t told about their breast reconstructive options.
Terri Coutee, founder of DiepCfoundation.org, won’t accept that statistic.
Coutee is a two-time survivor of breast cancer who turned her diagnosis, double mastectomy and breast reconstruction journey into a positive experience. Through her foundation, she helps thousands of people globally through education on breast reconstruction.
She remembers the day she walked into her mastectomy surgery, “I didn’t even have breast reconstruction on my mind. It wasn’t even on my radar.”
Coutee said she was lucky to have that talk, as she found out when her blog about her journey went viral.
“I can’t tell you how many women and how many men have said, ‘I had no idea you could use your own tissue’ or ‘Nobody told me I could do reconstruction of any kind,’” Coutee said.
Her foundation, she said, “fills that gap where there’s people that aren’t being told.”
Coutee underwent a procedure called DIEP Flap breast reconstruction, where her foundation gets its name. In this procedure, the breasts are reconstructed by using the patient’s own tissue. Coutee said she “was absolutely amazed” when the surgeon told her she could use her own tissue for her breast reconstruction.
“I am a bit of a purist, so I didn’t want anything foreign in my body,” Coutee said. “Everything else she said just kind of faded into a different conversation about any other type of reconstruction.”
The DIEP Flap procedure is considered to be the gold standard in breast reconstruction, and after diligent research, Coutee found a surgeon to perform her surgery
“For seven months I lived without my breasts and it was psychologically devastating for me,” Coutee said. “But seven months later, in December of 2014, I had DIEP flap surgery in San Antonio, Texas. The microsurgeon that I went to is nothing short of an artist and a skilled surgeon.”
After she returned from Texas, she began blogging about her experience, and it went viral. She received requests to guest blog and speak about her experience in front of audiences. At the urging of her son, she created the DiepCFoundation.org.
The foundation mainly connects to people online through social media. On the Facebook page, Coutee includes plastic surgeons and board certified physicians to give the site credibility.
“Every day I try to push out some evidence-based article that has been peer reviewed, that is a medical article,” Coutee said. “I don’t have a Facebook page that’s just chit-chat, whining, complaining, I don’t allow it. I put up front [that] it’s a positive support group.”
However, Coutee didn’t know how to run a nonprofit organization. At the time, she was working towards her Master’s degree in teacher leadership after being a teacher. That’s when she heard about SCORE.
SCORE is a national program that connects mentors to people who need advice on how to run businesses free of charge. Since it began in 1964, it has 11,000 volunteers around the country.
The Tucson chapter, which serves all of Southern Arizona, partnered with the Pima County Public Library to bring that mentorship to people in a space with many resources including databases, staff well versed in conducting research, and a wide variety of business books and magazines.
“We have long been committed as an institution to adult and family literacy, but also deeply dedicated to economic and workforce development,” said Holly Schaffer, the community relations manager for the library.
This partnership was viewed by those involved as a way to make a bigger impact on the Tucson community.
“We’re not the only ones out there doing this work, so why not work collaboratively with other organizations and put our resources together?” Schaffer said. “If we as a library are helping people to unlock their potential in their careers in their schoolwork, then undoubtedly it benefits our local economy and community as a whole.”
Coutee began meeting with SCORE mentor Nancy Hessney, who took over from Coutee’s original mentor who helped her set up the basics of a non-profit.
Hessney helped Coutee better understand running a non-profit and helped her set up a sustainable business model to make sure her work could continue. Hessney explained that some people get so wrapped up in the mission of their foundation that they forget the basics from a business perspective. But one reason Coutee is successful is because she follows through.
“I think her passion and her purpose is very evident,” Hessney said. “She is a quick learner and a great listener. And she implements. She follows through. That’s one key think that I see. It’s sometimes like ‘I don’t know if I want to do all this paperwork, I just want to focus on my passions,’ but she has a nice balance. I know how meaningful her work has been to many others.”
Through SCORE, Coutee not only learned how to manage her foundation, but also gained more visibility by them putting her story out there. For her dedication, Coutee was also named the SCORE Success Story of the Month for October.
Since launching DiepCFoundation last year, Coutee has educated 1,300 men and women worldwide on her private Facebook page, and more through her other platforms. Coutee has also traveled around the country to speak at conventions, connect to the survivor and patient community and reach out to surgeons.
“It brings tears to your eyes when you think about what these people have been through and where they are, and the community that [Coutee] has built for them to me is just so inspiring,” Hessney said. “I just have an enormous amount of respect for her. She really is fulfilling a gap that we have in the breast cancer community and I don’t think we really knew it.”
To learn more about the foundation, visit diepcfoundation.org/.
Rocky Baier is a University of Arizona journalism student and Tucson Local Media intern.