Childhood cancer survivors urged to get follow-up as adults
Ashton Pilkey (right) had a brain tumour removed 10 years ago when he was 13 years old. Affected by the radiation he was given at the time, he now goes for regular check-ups with Dr. Derek Prevost at Surrey Memorial Hospital.
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Ashton Pilkey was 13 when his mom Lori noticed some differences in him.
Her son was speaking slower than usual, but she thought he might be trying to mask the fact his voice was changing. He also seemed a little depressed, but again, Lori surmised it could be a reaction to the break-up of her marriage.
Still, the concerned mom brought the teen to the doctor, who did some basic neurological tests, like touching finger to nose or walking along a line on the floor. Ashton failed miserably.
He was immediately referred for a CT scan that showed a tumour in his cerebellum.
The mass, recalls Lori, was about the size of an egg, or as Ashton wryly comments, "Bigger than you would want."
Within three days, Ashton had an eight-hour surgery, removing 99.9 per cent of the tumour.
A month-and-a-half of radiation every day followed and then chemotherapy treatment for the next 42 weeks.
Though Ashton's life was saved, he, like almost all brain tumour patients, suffered a degree of brain damage. Age and dose determine the spectrum of damage in patients, but for Ashton, it meant learning to speak again and the 23-year-old has ongoing challenges with balance, coordination and fatigue.
Ashton, says pediatric oncologist Dr. Derek Prevost, is a good example of the need for follow-up for young adults who survived childhood cancer.
The Surrey Memorial Hospital specialist has been quarterbacking Ashton's care, ensuring he's connected with the services he requires, like being referred to an endocrinologist to deal with a hormone imbalance resulting from damage to his pituitary gland during the treatment of his brain tumour a decade ago.
But while Ashton is "recognized" as having long-term complications stemming from his cancer and treatment as a child, says Prevost, many young cancer survivors are not.
For example, he explains, almost every chemotherapy drug used can cause leukemia. That risk may only be between 0.5 and one per cent, but exists nonetheless.
"This is explained to families up front," Prevost says, "but it's what's saving their child's life at the time. The complications of not getting it are far worse."
Another chemotherapy used to treat Hodgkin's disease, commonly in the chest, leaves female survivors with a 40 per cent chance of getting breast cancer when they're older. But again, survivors may not be aware of or remember such statistics.
"I feel obligated to look after those patients because I've cured the disease, but I've also incurred the complications," says Prevost, who helped establish the regional pediatric oncology clinic in Surrey.
There is currently no coordinated system in B.C. to follow child cancer patients into adulthood. Ontario is the only province with an after care program that provides cancer survivors long-term follow-up, including regular contact with caregivers and early detection of effects from treatment.
Ideally, Dr. Prevost would like to see a partnership clinic in the Fraser Health Authority with a pediatric oncologist being the "knowledge spreader" and an internist treating and/or referring adults to the required specialists.
Until that happens, however, because privacy laws prohibit doctors from contacting former patients, he urges cancer survivors visit their family doctor and share their full health history, including any therapies or medications that were given.
It's estimated there are approximately 3,000 adults in B.C. who had cancer as children, meaning at least 1,000 are in the Fraser Health region.
"Patients out there have to know there's some degree of risk – albeit small," Prevost says.
sreynolds@surreyleader.com
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