Consumer Involvement
The diagnosis of ovarian cancer is devastating. Treatments are limited, and the 5-year survival rate is only 45 percent, so less than half of women who are diagnosed with ovarian cancer will live to see another 5 years. Ovarian Cancer Research Program (OCRP) Peer Reviewers, Debra Frick and Lori Clemens, are remarkable women who prove that ovarian cancer is survivable and offer hope to ovarian cancer patients.
Debra Frick is an 11-year ovarian cancer survivor. She remembers her first reaction to the diagnosis: “It becomes all consuming. You develop fear of surgery, fear of pain, fear of side effects of chemotherapy, and fear of dying.” She was able to use her fears to motivate her to survive. When Deb was first diagnosed with ovarian cancer, she took the time to research available treatments, her motivation to survive contributed to her willingness to travel 6 hours to get the aggressive treatment she was determined to have. Luckily she found a closer gynecology-oncologist willing to help with the aggressive treatments Deb requested. Deb is now enjoying her retirement and loves the beach, crafts, and gardening.
Lori Clemens is a 16-year ovarian cancer survivor. She was 48 years old when diagnosed and a single mother to a 14-year-old son. She attributes her survival to her doctor, who recognized the symptoms of ovarian cancer and took immediate action. These symptoms often go unnoticed. Living post-disease has been wonderful. Her son is in his final year of his medical residency, and she spends her retirement playing volleyball, tending to her 30 rosebushes, and taking care of her 93-year-old spunky mother.
Deb and Lori both beat the odds with ovarian cancer and have now turned to help other ovarian cancer patients become long-term survivors too. Their goal is to educate the public about ovarian cancer and support those affected by the disease. They are each involved in a number of advocacy groups. Deb supports the Michigan Ovarian Cancer Alliance’s Tie Michigan Teal campaign and facilitates an ovarian cancer support group. Lori works with the Ovarian Cancer Research Alliance, the Tucson Chapter of the National Ovarian Cancer Coalition, and the Accelerating Anticancer Agent Development and Validation Workshop, which is a unique forum designed to increase the availability of cancer treatments for patients. Both women participate in Survivors Teaching Students. Through this program, they tell medical and healthcare students their stories of diagnosis, treatment, and recount any signs or symptoms leading up to their diagnosis, as well as their personal feelings during this time. Their hope is that such stories will be remembered when future doctors and nurses are caring for patients with ovarian cancer.
Both women also participate as Peer Reviewers for the OCRP. The involvement of consumers is a hallmark of the OCRP; ovarian cancer survivors and advocates, together with scientists and clinicians, work to identify high-impact, innovative research that will lead to the elimination of ovarian cancer. Ovarian cancer survivors provide their unique perspectives on the human dimension of the disease to support research that reflects their community’s concerns. Deb and Lori have had positive experiences with the OCRP. Deb recalls that she was “in awe of the work being done for ovarian cancer, as well as the wonderful physicians, scientists, and biostatisticians. I learned so much and really enjoyed participating. It is so reassuring that survivors’ opinions count and are heard.” Lori explains that she “enjoys the consumer advocate program and loves how the survivors are respected. I definitely feel like an important part of the team.”
The success of the OCRP can be attributed to the synergistic efforts of many talented and dedicated individuals. Deb and Lori are two of those individuals who offer invaluable experience to the program’s review panels. These women, and survivors like them, may provide the key to long-term survival. By listening to their opinions and stories, the OCRP hopes to help other ovarian cancer patients have a higher quality of life during treatment and post-disease and to ultimately help them become long-term survivors like Deb and Lori.
Debra Frick
Lori Clemens
Last updated Thursday, December 5, 2024