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Cancer survivors often find themselves keeping track of specialist appointments, MRI or CT tests, other medical screenings, bloodwork and additional treatments years after their initial disease was cured or went into remission.
It sometimes feels like a full-time job, said Talley, who has been working at an animation studio in Portland, Oregon.
“People talked about cancer survivorship like, ‘Oh, you’re done. You survived.’ And like, ‘Everything’s good now, you’ve done it,’” she said. “And really, the most work is after.”
Constantly being on the lookout for a long list of potential late-term effects from her prior cancer treatments can be overwhelming, Talley said.
“Sometimes you feel like, is this just the cut and paste list that they give to everyone or am I specifically at a high risk for these types of things? Like, do I actually need to be worried about that?” she said.
Navigating the years and decades after surviving cancer can come with burdens and challenges that extend beyond the medical aspects, Mostoufi-Moab said. These challenges can impact mental health, lifestyle, financial stability, social life and more.
“I think it can really be a challenge for a young adult survivor of childhood cancer to feel like they are having the same adulthood experience as their peers,” said Mostoufi-Moab.
The first time Henry Korneffel realized that he was different than his peers was when he was a child and getting treatment for juvenile myelomonocytic leukemia, a rare form of the disease.
“It was probably kindergarten, first grade, and I had to have a feeding tube all the time, and I remember I’d have to skip school sometimes to get it changed,” he said.
Korneffel and his family lived in Colorado, but his parents brought him to CHOP for treatment, which included chemotherapy, full-body radiation, a bone marrow transplant and a partial splenectomy over the course of several years.
The treatment plan cured his leukemia, but it later caused delayed growth and hormone development as Korneffel aged, and he needed to take medication to help.
When he was 18, Korneffel was again diagnosed with cancer. This time, it was a tumor in his right thigh that was successfully treated with chemotherapy and surgery, but that left him with some swelling and nerve damage to this day.
Now 24 years old, Korneffel lives and works in Los Angeles. He hopes cancer treatment is behind him, but he knows that all his past treatments still put him at a higher risk of future health complications.
“I don’t think that dread really ever goes away,” he said. “But you need to find things in life that really bring you joy. I’m lucky I’ve had such an incredible time finding new friends, being in a new city and having a medical system behind me that is so supportive.”
For Talley, she said surrounding herself with family and friends, staying present and not stressing too much about what’s ahead helps her manage the daily challenges of surviving cancer each time.
“I like to kind of know what’s coming up, but sometimes you don’t know that and you just have to take what you can get,” Talley said. “You have to let go of that kind of control, because you don’t have it. That’s something I am definitely working on.”