Terri Coutee transformed her personal experience with breast cancer into a mission to educate and support thousands of patients worldwide through the DiepC Foundation.

Terri Coutee, Founder and Director of the DiepC Foundation

When Terri Coutee received her first breast cancer diagnosis in January 2002, she went through grueling weeks of surgery, chemotherapy, and radiation. Unbeknownst to her, the fight was not over. Twelve years later, in 2014, cancer returned. The second diagnosis hit just as hard, bringing with it the life-altering decision to undergo a double mastectomy.

“It was devastating,” Terri recalls, “but at the same time, it offered a glimmer of hope.” That hope came in the form of her breast surgeon, who patiently walked her through all her reconstruction options. Her surgeon offered the gold-standard procedure that uses a woman’s own tissue, the DIEP flap breast reconstruction. The surgery was life-changing. The care and thorough education she received from her plastic reconstructive surgeon ignited a spark, one that would grow into the DiepCFoundation, a nonprofit dedicated to helping people navigate their reconstruction journey after breast cancer. Today, with over 20,000 members across her online channels, Terri has become a voice for patients navigating some of the most challenging decisions in cancer care.

Challenges Faced by Breast Cancer Survivors

Thanks to effective treatment options, the number of breast cancer survivors is increasing. But with this positive development comes new challenges. Terri noted, “One of the biggest challenges I see breast cancer survivors face is body image after treatment and surgery. That’s where my Foundation steps in. We offer a private online support group where women can connect, hear other women’s lived stories, and know their feelings are valid. We also provide resources and ideas for embracing your body after surgery, whether through clothing choices, affirmations, or simply recognizing that your body is strong, as it carried you through treatment and recovery.” Ultimately, she aims to help survivors find ways to feel comfortable and confident in their own skin.

Breaking Down Breast Cancer Myths and Misconceptions

One of the most powerful aspects of Terri's advocacy work lies in addressing the myths that can overwhelm newly diagnosed patients. "Time and not going through breast cancer treatment alone," she emphasizes as the two most important misconceptions she wants patients to understand.

"You can take time to assess what treatment and surgery you think will be best for you," Terri explains. "For many, a breast cancer diagnosis feels urgent, like you need to treat the cancer right now. To be clear, there are those types of breast cancer where a more urgent decision is necessary. But often this is not the case."

Even more important is the isolation that often accompanies a breast cancer diagnosis. "Breast cancer does not have to be an isolating disease or event in your life," Terri shared. "Finding support through community is not only valuable, but helps patients feel supported and more in control."

She encourages patients to ask questions, find credible resources, and assess their personal values and support systems before making life-changing decisions.

Championing Shared Decision-Making in Breast Cancer Care

As co-lead of the shared decision-making expert group with Dr. Minas Chrysopoulo for the World Health Innovation Summit (WHIS), Terri has become a passionate advocate for a healthcare model that puts patients at the center of their care decisions.

"Shared decision making places the patient's preferences and values at the center of the decision-making process, rather than having a surgeon or healthcare professional tell them what they think is best," she explains. "Multiple studies throughout various medical fields have shown that shared decision making improves patient outcomes and satisfaction. And truly, it is the most ethical way to practice patient-physician care."

Bringing Cutting-Edge Information to Patients and Championing Breast Cancer Care Equity

Terri's advocacy extends beyond individual patient support to systemic change. In 2023, she represented the DiepC Foundation at a Centers for Medicare & Medicaid Services (CMS) hearing when the S-codes for autologous breast reconstruction were going to “ cause a massive lack of access for breast reconstruction surgery."

"It was a monumental accomplishment achieved because of the efforts of many. We're very proud to have played a part in that," she reflects on this crucial advocacy win.

Similarly, on the education front, through her annual DiepC Foundation Breast Symposium, Terri ensures patients have access to the latest developments in breast cancer care. A recent symposium highlights included discussions on sensate breast reconstruction, a technique that can preserve or restore breast sensation after mastectomy.

"There are many women, and men, because men get breast cancer too, who are just not aware that you can not only preserve sensation at the time of mastectomy, but if that sensation is lost through mastectomy, you can also reconstruct nerves to restore that sensation," Terri explains.

A Message of Hope and Empowerment

At the heart of Terri's work lies a simple but powerful message: "At the end of the day, patients want answers, not drama." Through the DiepC Foundation, she has created a space where patients can find both the emotional support they need and the evidence-based information required to make informed decisions about their care.

Her journey from patient to advocate demonstrates how personal experience, when harnessed for systematic change, can positively impact thousands of lives. For newly diagnosed patients feeling overwhelmed by decisions and isolated by their diagnosis, Terri's story offers both hope and practical guidance. To encapsulate her frequent responses to patients, Terri said, “You have time to make good decisions, you don’t have to go through this alone, and your voice matters in your care”.

To learn more about the DiepC Foundation's resources, visit www.diepcfoundation.org or check out their YouTube and podcast channels. The foundation's private Facebook group provides ongoing support and information for patients and caregivers affected by breast cancer.