Endocrine Late Effects After Cancer Treatment: Raine’s Story
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“It was just something that happened.” That’s how Raine, 23, describes her 8-year-old self’s reaction to being diagnosed with acute lymphoblastic leukemia. “When you’re a kid and you’re diagnosed with cancer, you don’t think about the big picture or ‘why me?’” Even though Raine successfully beat the leukemia, that experience as a child has had long-term effects on her health, including a second cancer diagnosis and other health problems involving her damaged endocrine system. These problems have been caused not by the leukemia itself but by the treatment for the leukemia.
When she was 8 and didn’t know any better, being a cancer patient seemed “almost normal,” says Raine, except for one thing. “I remember people staring at me when I was bald,” she says. “When you’re a kid, adults and kids think it’s OK to stare at you. It was hard.”
She was treated at Children's Hospital of Philadelphia (CHOP) with chemotherapy and then a bone marrow transplant. Her younger brother John was her donor — which, at the time, she was definitely not happy about. “When we were little we didn’t get along. He was my annoying little brother, so I was like, ‘I don’t want his bone marrow!’” she says with a laugh.
To prepare for the bone marrow transplant, Raine received full-body radiation. The radiation kills the cells in her bone marrow in preparation for the new cells from her donor. But it can also result in long-term complications.
Various cancer treatments such as chemotherapy, radiation and immunotherapy can all lead to complications years down the line, called “late effects.” The problems can be physical or psychological. In particular, approximately 50% of patients have at least one long-term complication with their endocrine system, often involving growth, puberty, thyroid function or the onset of diabetes mellitus. For these patients, CHOP has a dedicated clinic called the Endocrine Late Effects after Cancer Therapy (ELECT) Program, staffed by pediatric endocrinologists and led by a dual-certified pediatric oncologist/endocrinologist with expertise in the late effects due to cancer treatment.
For a decade, Raine was monitored by her team at CHOP, at first every few months, then yearly. She was highly careful of her health. But she first experienced endocrine late effects when she was diagnosed with ovarian failure and needed to take hormones to initiate puberty and menstruation.
Then when she was a college freshman, she was diagnosed with thyroid cancer. “Even though I knew it wasn’t as serious as what I had to go through as a kid, it was scary to hear that word again,” she says.
Treatment began with the surgical removal of her thyroid. Then, after following a low-iodine diet for a several weeks to starve her body of the mineral, she underwent radioactive iodine treatment, which destroys any remaining thyroid tissue as well as any microscopic areas of thyroid cancer that can’t be removed during surgery. The treatment simply consisted of taking a pill with radioactive iodine, making her mildly radioactive as it did its work.
“I had to be quarantined for two weeks,” Raine recalls. “At first I was like, ‘This is great! I can hang out and watch movies for two weeks.’ After about three hours, I was so sick of it.” She didn’t have any physical symptoms. “It was just an inconvenience, because I like to always be active or working on something.”
Today, Raine is a graduate of Drexel University with a major in filmmaking, and she hopes to find work in children’s television. During her college years, she took several particularly meaningful classes. One covered the basics of cancer for non-science majors, which helped her fully understand “all the words that were tossed around me as a kid.” Another brought together her life as a student with her past life as a patient: For a course called Drexel Story Medicine, she helped write and perform original plays twice a week for the kids at CHOP, first as a student and then as a leader. These shows are broadcast live on CHOP’s closed-circuit television network, Galaxy 51. “It was amazing,” she says of the course. “It’s what I want to do, and it took place in the hospital where I spent so much time.”