A long-term relationship: Cancer monitoring and checkups go on for a lifetime

Survivors of childhood cancer have access to the Upstate Survivor Wellness Program team, which will track their health for the rest of their lives. Team members, seated from left, are Jody Sima, MD, program director; Tanesha Keene, scheduler; and nurse practitioner Brooke Fraser. Standing from left are nurse Robin Monteleone, program manager; Melanie Comito, MD, chief of pediatric hematology/oncology; and clinical social worker Stephanie Barry. (photos by Robert Mescavage)

BY JIM HOWE

A diagnosis of cancer can focus the patient’s attention on short-term concerns, such as getting through a round of tests and treatment while coping with daily life.

It isn’t until much later that patients enter into a long-term stage of cancer care: survivorship.

Survivorship involves what can be a lifelong relationship between people who get cancer and the specialists who will monitor their health and progress.

“There are a lot of definitions of survivors. We say someone is a survivor from the moment of diagnosis, no matter how long you survive,” says Jody Sima, MD, the pediatric oncologist, or childhood cancer specialist, who directs the Survivor Wellness Program at the Upstate Cancer Center. In years past, childhood cancer survivors were monitored under the KNOT program, which stood for Kids No longer On Treatment.

Sima sees more than 200 cancer survivors annually, in addition to her regular work dealing with young patients currently getting treatment.

Survivors typically get a physical and blood tests, in addition to a talk with Sima on how they are doing. Further tests might be ordered for patients who need long-term monitoring regarding the possible effects of certain drugs or radiation. Sima will send the results to the patient’s primary doctor and help the patients to understand their particular health issues and to take possession of their care as they move from parent supervision into adulthood.

(Click here for a podcast/radio interview where Jody Sima, MD, talks about surviving childhood cancer and what that means as the patients grow older. Joining her in the discussion is a parent whose daughter survived cancer in infancy.)

Patients are encouraged to call with questions or concerns, and Robin Monteleone, a nurse who is program coordinator for survivorship, will see that they get the information they need.

Survivorship involves a lot of “amped-up primary care,” Sima says. Her biggest intervention in most cases is a push to get regular exercise, which is linked to better outcomes.

Some past treatments for childhood cancer were harsh and can cause health problems later in life. Those patients might be monitored for things like fertility, blood pressure or heart problems. Different generations of survivors are watched for conditions related to treatments that were current when they were children. “It might take years to see long-term effects,” Sima says.

Because survivorship includes adults, Sima will be dealing with issues that don’t usually crop up with her pediatric patients, such as sexuality.  She has undergone training in survivorship and regularly deals with adults who had cancer as children. Survivors who first get cancer in adulthood are generally monitored by the providers of adult cancer care.

“The goal is to help them live their lives, to know where they are, and to be a resource that knows the patient and the treatments,” she says.

‘Hope for all survivors’

Jody Sima, MD, is director of the Upstate survivor wellness program.

Sima, who oversees survivors of childhood cancer, describes survivorship as a journey, with a wide range of how people experience the disease, its treatment and its aftermath. She offers these thoughts on surviving cancer:

• “Some of my survivors grow despite it.  Some grow because of it. And others really suffer. It depends on physical functioning, or if there are long-term effects like chronic pain. It helps to have a job or to do volunteer work or other things that are meaningful in the world.”
• “In survivorship, a lot of it is dealing with the bad effects of treatment, what can go wrong, so sometimes it’s easy to lose sight of what can go right, and it’s nice to have an opportunity to celebrate the good.”
• (Regarding her patient Dan Kosick, whose survivorship story can be read here) “It was a very hard experience to go through as a young teen, a lot to bounce back from. He’s such a lovely guy in a bright spot. His whole life is about giving back: social worker, coach, on the board of Make-A-Wish … it’s what you hope for all your survivors.”