Staying Alert to Late Effects

When Haley, 33, a childhood cancer survivor, tells a new health care provider about her medical history, sometimes she detects a “deer in the headlights” type of reaction.

The reason? Childhood cancer is very rare. So uncommon that many providers have never taken care of a childhood cancer survivor. They often are not aware of the long-term effects of cancer treatments.

“They’re sometimes overwhelmed and unsure on how to move forward,” Haley said.

As a result, it’s always important to become your own health care advocate and try to ensure your provider gets the information he or she needs before making decisions. Haley has found herself in that role many times.

She takes her survivorship care plan with her to medical appointments. It gives specifics about her treatment history, health risks, and a recommended time schedule for screening and other tests. She knows her medical needs and can communicate them to health care providers.

“It’s important to advocate for yourself,” Haley said. “No one else has had your experience. Nobody knows your history like you do.”

Haley was diagnosed with chronic myeloid leukemia, a rare cancer in children, in 1996 when she was 11. A hematopoietic cell transplant (also called a bone marrow or stem cell transplant) cured her disease. But the total body radiation treatments and chemotherapy she received as part of her transplant have caused many late effects. Late effects are side effects that appear after patients have completed therapy.

Dealing with late effects of childhood cancer treatment

Several years later when she was a sophomore in high school, Haley noticed a strange painful sensation inside her ear when she was using headphones in her Spanish listening lab. Then she noticed a lump behind her ear.

A biopsy revealed a diagnosis of mucoepidermoid carcinoma of the parotid gland, one of the salivary glands. The tumor was removed by surgery followed by 8 weeks of radiation therapy.

After college, Haley developed a benign tumor in her spine that was surgically removed.

Haley also has had several skin cancers. When she noticed changes in her skin she brought them to the attention of her dermatologists. They didn’t think her skin lesions were cancerous because of her young age. But Haley insisted they undergo a biopsy.

“I said I had total body irradiation. It’s a new lesion and looks irregular. To be safe everyone agreed to have it removed. They did and it was cancer,” Haley said. “It’s important to really advocate for yourself. This is my history. It is unique, which can result in a unique treatment plan.”

Haley has also experienced other late effects. She has scarring on her lungs that has caused shortness of breath. She has low bone mineral density.

Not being able to have children was Haley’s main concern. Infertility can be a late effect of treatment. Haley started hormone replacement therapy at 13, so she would have menstrual cycles. She was later told she had a condition called premature ovarian failure, which meant she would be infertile and unable to become pregnant.

After Haley married her husband, Paul, she began fertility treatments, but they weren’t successful. However, their daughter, Hazel, was born in 2016. Then in 2018, they had their son, Isaac. “I couldn’t believe it,” Haley said “It was literally a miracle.”

A graduate of the University of Oklahoma, Haley is now a physician assistant. She stays on top of her health and advises other survivors to do the same.

Taking care of unique health care needs

It’s important to keep up with appointments and follow-up visits, Haley said. She sees her primary care physician and physician assistant once a year for a general check-up and routine lab work. She visits her dermatologist and pulmonologist every 6 months and her obstetrician/ gynecologist once a year.

She also sees an ophthalmologist once a year due to having small cataracts in her eyes. Even at her young age, Haley has already had 2 mammograms as part of her care at St. Jude Children’s Research Hospital’s long-term follow-up clinic.

She walks and takes Zumba class for exercise. She takes calcium supplements and does weight-bearing exercises to build bone strength.

She also volunteers her time to raise money for St. Jude. “I enjoy helping raise awareness and advocating for the hospital that helped save my life and the amazing work they are doing to save the lives of children around the world.”

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