Consumer Involvement
Most ovarian cancers develop after menopause. The peak incidence of ovarian cancer is between 60 to 65 years of age, but it also occurs in much younger premenopausal women. Renata Lutz and Ilana Feuchter are examples of young ovarian cancer survivors. They share their stories in the hopes that it may help others and bring attention to the needs of ovarian cancer survivors, such as earlier detection and treatment options, and the importance of survivorship and quality of life issues.
Renata was diagnosed with ovarian granulosa cell tumor at 30 years old. It was identified during surgery for a vascularized cyst and resulted in a unilateral salpingo oophorectomy (removal of an ovary and a fallopian tube). She also faced a recurrence of ovarian cancer 4 years later. Her diagnosis with ovarian cancer impacted her personal and professional life, and she faced depression over the uncertainty of whether she could ever raise a family. Renata persevered and today has a family complete with two small boys. Together, the family enjoys the beach and the outdoors. When Renata was diagnosed with recurrence, she found support from the Ovarian Cancer Alliance of San Diego (OCAofSD). She explains that, “the OCAofSD is a sisterhood that plays an important role in supporting the women that are diagnosed with the disease. The OCAofSD has an important presence in the region, and their work in advocating for women’s health has raised awareness on the signs and symptoms of ovarian cancer.” Soon after her treatment she began volunteering in the organization; she participated in their first ovarian cancer walk (Teal Steps) and co-chaired the event the following year.
Renata Lutz and family
Ilana was 45 years old when she was diagnosed with ovarian cancer. Her mother had ovarian cancer and a BRCA1 mutation, which prompted her to get tested. Ilana found out she also had the mutation and decided to have a salpingo oophrectomy to reduce the likelihood for having both ovarian and breast cancer. During the procedure, her doctor discovered stage 2 cancer. Of the experience, Ilana explains that, “While I wish that I never had cancer, the experience has allowed me to better distinguish what matters to me and who matters to me. I say these are the “gifts” of having cancer. Additionally, I have met so many other amazing survivors who bring joy to my life.” Now a survivor, Ilana loves to spend time with her family, travel, play tennis, and read. Like Renata, Ilana also turned to patient advocacy for help during her journey and is now helping others with the disease. Ilana wanted to continue to help others with their diagnoses and took a position with the National Ovarian Cancer Coalition, which allows her to support women across the nation. She also empowers others by speaking on behalf of cancer survivors at different events.
Ilana Feuchter and family
Both women described their experiences with the Ovarian Cancer Research Program (OCRP) as empowering. Renata participated in the OCRP Peer Review in fiscal year (FY) 17 and FY19, she noted that, “Being part of the review process allows us, survivors, to give input in what we believe would be life-changing for the people facing ovarian cancer. There is a deep level of gratitude and appreciation by the OCRP towards the consumer advocate community.” Ilana has participated in the OCRP Peer Review in FY18 and FY 19, she describes the experience as: “…an incredibly empowering experience. With daughters who might be at risk for ovarian cancer, it is important that I know what is happening in the field to create an early diagnostic tool, better treatment options, and a cure! Sitting on the panel brings me hope for the future.”
Survivors are an integral part of the OCRP funding process. Their stories make it clear that, while ovarian cancer treatment options are vital, survivorship and quality of life are also important topics for young survivors. The OCRP recognizes this and has included survivorship and quality of life issues in the program’s goals. One key message the ovarian cancer survivors offer is hope. Ilana stresses, “Never lose hope! There are people out there in the world who will one day discover an early diagnostic tool, better treatment, and a cure.”
Last updated Tuesday, November 12, 2024