Family, Self-Advocacy Are Critical For Young Patients With Cancer

During a cancer journey that has lasted half of her life, Camille Wahl has learned about the power of patient advocacy.

Wahl, now 21, received a diagnosis of osteosarcoma — a rare cancer which starts in the bones — in 2013, when she was 10 years old. An Irish step dancer from the age of 3, Wahl noticed a bump on her shin one day after class, which had been preceded by some pain in the area.

“I was a little bit worried and thought I should probably tell my parents about this, so from there I got an x-ray, which led to an MRI and a bone biopsy, and that biopsy showed that I had high-grade osteosarcoma,” said Wahl, who lives in Massachusetts. “It took up about three-fourths of my tibia bone in my right leg and by the time it was found, it was also spread to both my lungs, so I was metastatic at diagnosis.”

Treatment with chemotherapy, surgery and radiation has followed over the years, but Wahl’s disease has continued to return. In March, she experienced her ninth relapse.

But throughout it all, Wahl has had a steadfast ally and advocate in her mom, Colleen, with a background as a research coordinator at Boston Medical Center.

“From day one after my diagnosis, once the shock wore off and everything, she was immediately looking into second opinions, research, clinical trials in osteosarcoma,” Wahl said of her mother. “And actually, six months into my initial treatment, we traveled to Memorial Sloan Kettering Cancer Center [in New York City] for a second opinion. And that was all driven by her research. That wasn't a recommendation of my oncologist, that was all from her.”

Colleen, on her daughter’s behalf, sent scans to an osteosarcoma expert at the Cleveland Clinic and searched out clinical trials — “Practically every single clinical trial that I've been on hasn't been a suggestion of my oncologist, it’s always my mom who has brought it up,” Wahl said — and petitioned the FDA for compassionate use of mifamurtide, a drug approved in Europe for the treatment of bone cancer.

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“Once I turned 18, all of that responsibility fell on me,” Wahl said. “Given my complex history at that point, I had been in treatment for eight years when I turned 18, it was like a huge transition to kind of take over that role from my mom, and I don't think I've taken over at all, she is still a huge player in helping me advocate for myself. But I think it just took a lot of practice.

“And now I know how to write a good email to my oncologist. I know how to ask appropriate questions and not be afraid to ask those questions because I think sometimes the younger me would be afraid to ask like, ‘OK, what are the long-term side effects from this? Is this really going to work? What is my future going to look like?’ and really advocate for what I want, which is mostly like quality of life, allowing me to go to school and live life like a normal 21-year-old.”

Wahl advocates for herself and her fellow patients as president of the junior advisory board of the pediatric osteosarcoma nonprofit organization MIB Agents, for whom she co-hosts the podcast “osTEAo: Spilling the Tea on Osteosarcoma” and was part of a contingent of board members that recently traveled to Washington, D.C. to advocate in appearances at the White House and on Capitol Hill.

“MIB stands for make it better,” Wahl said, “so they make it better for the osteosarcoma community, patients, family survivors, bereaved families, as well as researchers, doctors, just everyone in the community through programs research and education.”

Wahl had advice for patients potentially overwhelmed by the prospect of taking charge of their own care and advocating for themselves once they turn 18.

“Just because you're 18 and an adult doesn't mean you need to kick your parents to the wayside, I would definitely still involve your parents,” she said. “I know my mom has really been a huge advocate for me, even after turning 18. And she's still very much involved.

“And there are some points, like during my chemo, I would sleep 18 hours a day, there was no way I could advocate for myself and put into words ‘I need more nausea medication’ or ‘Why is my blood pressure low?’ and ‘Why is why is this lab value off?’ So, I think it's still important to involve your parents if you can.”

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