New Life After Cancer
Truly patient-centered cancer care means seeing the whole person. For some, that includes prioritizing fertility preservation.
Liz Kapeel was 25 and living in San Diego when she was diagnosed with cervical cancer. Within a month, her treatment plan came together —a mix of radiation and chemotherapy. Now, years later, she knows something vital was missing: a discussion about fertility preservation.
“They told me that, essentially, I would be sterile afterward and treatment would send me into early menopause; I wouldn’t be able to have children,” Kapeel says. “And that was really the end of that conversation. They didn’t give me any options.”
S. Gail Eckhardt, M.D.
Director, Livestrong Cancer Institutes
Chair, Department of Oncology, Dell Medical School
Kapeel now shares her experience as a founding member of the Young Adult Advisory Board at the Livestrong Cancer Institutes of Dell Medical School at The University of Texas at Austin, where she hopes to help shape the future of cancer care. Oncofertility is one example of the wraparound services that are part of the institutes’ CaLM Model: a patient-centered approach to prevention and treatment. CaLM is shorthand for “Cancer Life Reimagined,” the institutes’ vision.
“So often, patients are shuttled from specialist to specialist, and treatment focuses solely on getting rid of the cancer while ignoring all other aspects of a person’s full life,” says S. Gail Eckhardt, M.D., director of the Livestrong Cancer Institutes and chair of the Department of Oncology at Dell Med. “We developed the CaLM Model as an answer to that — making sure that patients’ bodies, minds and souls are cared for holistically while they live with cancer.”
Listening to the Right Voices
Key to CaLM’s success is integrating the voices of those most affected by cancer: patients and families themselves. Under the leadership of the Livestrong Cancer Institutes’ Rebekkah Schear, associate director of patient experience, and Robin Richardson, assistant director of care delivery transformation and community engagement, the Young Adult Advisory Board meets once a month to discuss how cancer care might better fit that specific population.
Anmol Desai, who joined the board in 2020, lends her perspective alongside Kapeel and others. The experience she shares is, at times, a uniquely positive one: “When I went for my first appointment with my oncologist and was diagnosed, fertility was pretty much the first thing that my oncologist brought up after discussing my treatment plan,” Desai says.
More commonly, though, board members share stories like Kapeel’s.
“I couldn’t believe how many of our young adult advisors, when they talked about their experience, said, ‘No one told me this was going to impact my fertility; I didn’t have a choice; I wasn’t educated on this,’” Richardson says. “It’s a wake-up call, and the board members are key to helping us build this care model with as much empathy as possible.”
Sarah Felderhoff serves as the advanced practice provider of oncofertility at UT Health Austin, the clinical practice of Dell Med, where the CaLM Model is applied to cancer care. Day to day, she meets with medical oncologists and patients to discuss how a treatment plan may impact a given person’s fertility. Treatments range from egg and embryo freezing to sperm preservation.
“Oncofertility basically bridges the gap of oncology and reproductive medicine,” Felderhoff says. “Our goal is to preserve patient fertility prior to them starting any treatment, so that as they move on into survivorship and post-cancer life, they’re able to build a family on their own terms.”
Felderhoff also meets regularly with the young adult board, getting feedback on their experiences and how they’d like to see fertility addressed in an ideal treatment scenario. In that way, the board has a day-to-day impact on how Felderhoff works.
“Young adults can be something of an underserved population for cancer — they’re somewhere in between pediatric and older patients, and their needs are unique,” Schear says. “Oncofertility is one of the biggest examples of that. They want to get through treatment, but they also want options afterward.”
Hope for the Future
Back in the early days of her diagnosis, Kapeel ultimately transferred hospitals, and her new oncologist immediately brought up fertility preservation. Though Kapeel declined preservation options in the interest of starting treatment right away, she found that the simple act of the conversation gave her hope for the future.
Advanced Practice Provider, Oncofertility, Department of Women’s Health
Dell Medical School
Felderhoff says this comes up often with her patients at the Livestrong Cancer Institutes.
“I think just offering fertility preservation gives patients hope,” Felderhoff says. “It gives them the opportunity to look past cancer.”