What Are Late Effects? The Cost of Childhood Cancer Treatment
I was treated for childhood cancer in the late 1970s. It took thirty years for anyone to tell me what the treatment had left behind. This is the version I wish someone had handed me — for survivors, for the people who love them, and for the clinicians who see them.
What “late effects” means
Late effects are health problems caused by cancer treatment that show up after treatment ends. Months later. Years. Decades. Chemotherapy, radiation, and surgery save children’s lives — and they do their work on bodies still under construction. A heart. A thyroid. A nervous system. All of it still being built while the treatment does what it does.
The cancer ends. The treatment, it turns out, doesn’t.
Why you didn’t know
Not carelessness. Arithmetic. Before the 1960s, children didn’t survive cancer. Through the 1970s, the job was survival, full stop. What the cure would cost at forty was a question that needed forty-year-old survivors to answer it. There weren’t any. Today, more than 85 percent of children diagnosed with cancer survive five years or more, and the survivors of my era are the first generation old enough to show medicine what the aftermath looks like.
Every cohort is its own country
Treatment is always changing. The protocols of the 1970s are not the protocols of the 1990s are not today’s. Each generation of survivors carries the late effects of its own era — the specific drugs, doses, and radiation techniques of the years they were treated. My cohort’s risks don’t map onto someone treated in 1995. Neither of ours predicts what today’s children will carry; their doses are lower, their protocols gentler, and their late effects are tracked from the start.
This is why the screening guidelines are keyed to what you actually received, not to “childhood cancer” in general. It’s also why everything you read about survivors — this post included — has to be filtered through when and how you were treated.
The numbers
They’re blunt. The St. Jude Lifetime Cohort Study brings adult survivors back and examines them head to toe. Ninety-eight percent have at least one chronic health condition. By age 45, 80 percent have a condition that is serious, disabling, or life-threatening.
The usual suspects
Late effects depend on which treatments you had, at what doses, at what age. The common ones: heart damage from certain chemotherapy drugs and chest radiation, lung scarring, thyroid and hormone disorders, hearing loss, infertility, neuropathy and nerve pain, chronic pain and fatigue, trouble with memory and concentration, and second cancers in radiated areas. And the ones without lab values: anxiety, depression, post-traumatic stress. Those can sit quietly for decades.
“It’s probably anxiety”
Here is the part survivors know and few doctors do. Your records are in a basement somewhere, if they exist. Mine were twelve boxes of paper files. Your adult doctors have never been trained on pediatric protocols from decades ago. Your symptoms — fatigue, pain, a racing heart — look like a hundred ordinary things. So the story gets simplified. You’re anxious. You’re deconditioned. You’re a worrier.
Some survivors hear it for decades. I did. The symptoms had a cause the whole time. It took a survivorship clinic to connect them — and being believed, it turns out, is where getting better starts.
What you can do
- Get your treatment summary. Which drugs, at what cumulative doses, and where the radiation fields were. A survivorship program can help reconstruct it from old records.
- Read the Children’s Oncology Group Long-Term Follow-Up Guidelines at survivorshipguidelines.org — screening recommendations keyed to your specific treatments. Bring them to your doctor.
- Ask for a survivorship clinic. Many children’s hospitals and cancer centers now run programs for adult survivors of childhood cancer. You don’t have to be a current patient to be seen.
- Take yourself seriously. If your body has been telling you something for years, it is allowed to be right.
- Keep asking. The best advice I ever got came from a doctor in my survivorship clinic: if you have questions, keep asking. Find different doctors, and keep asking until you feel — in your mind and body — that what they say resonates. And once you find that doctor, cling to them. And keep asking.
I wrote a memoir about the rest of it — what the cure cost, and what healing actually asked. All These Fish comes out September 1.
Sources
Children’s Oncology Group — Long-Term Follow-Up Guidelines: survivorshipguidelines.org
Hudson et al., JAMA (2013) — clinical ascertainment of health outcomes among adults treated for childhood cancer (St. Jude Lifetime Cohort): pmc.ncbi.nlm.nih.gov/articles/PMC3771083
Bhakta et al., The Lancet (2017) — the cumulative burden of surviving childhood cancer: sciencedirect.com/science/article/abs/pii/S0140673617316100
Nature Cancer (2024) — accelerated biological aging and frailty in adult survivors of childhood cancer: nature.com/articles/s43018-024-00745-w
JAMA Network Open (2023) — modifiable health conditions and late mortality in survivors of childhood cancer: jamanetwork.com/journals/jamanetworkopen/fullarticle/2801238
National Cancer Institute — Childhood Cancer Survivor Study overview: cancer.gov/types/childhood-cancers/ccss