Survivors of childhood cancers become lifelong watchdogs of health

Published: Wednesday, Sept. 3 2014 6:05 p.m. MDT

Julie Reynolds at home Wednesday, Sept. 3, 2014, in Provo. Julie survived childhood cancer.

Scott G Winterton, Deseret News

SALT LAKE CITY — It was an experimental treatment, but because of it, Julie Reynolds survived childhood cancer.

"It has definitely made me see life with the cup half-full," she said. "I don't take every single day for granted. I'm a little more cautious with life."

Reynolds, now 33, was diagnosed with Hodgkin's lymphoma at 15 and despite the miraculous treatment, she still deals with several long-term effects resulting from intense chemotherapy.

While cancer remains the second-leading cause of death in children ages 5 to 14, death rates for all pediatric and adolescent cancers have declined 50 percent from 1975 to 2010, according to a new report from the American Cancer Society.

More children are pushing through the heavy doses of chemotherapy and having hope of a better quality of life. These days, according to the report, approximately one in 530 adults between the ages of 20 and 39 is a childhood cancer survivor.

And with more survivors, more people have to be aware of the potential for long-term health issues, as cancer treatment can wear down a body and lead to problems later in life.

Dr. Zeinab Afify, a pediatric oncology specialist at Primary Children's Hospital, said patients are made aware of the long-term potential of side effects or other issues that can result from their cancer treatment. That potential, she said, is dependent upon many factors, including the type of therapy they receive and the type of cancer being addressed.

"We basically weigh the benefits," Afify said. "Since the cancer is fatal, we have to take some risk."

The doctor recommends childhood cancer survivors adopt a healthy lifestyle, including maintaining a healthy weight and not smoking, following up with a physician every year and being aware that issues may arise, but when they do, take care of them quickly.

The American Cancer Society points out that kids treated for brain tumors (a leading cancer in children) are more likely to experience seizures, weakness in the arms and legs, blindness, hearing loss and neurocognitive deficits later in life, although it doesn't always happen.

Other common side effects of cancer treatment include ongoing issues with low red and white blood cell and platelet counts, gastrointestinal problems and various pain, the report states.

And like Reynolds, some never regain the strength or ability levels they had before diagnosis.

"I was pretty active before I was diagnosed. I danced. I was in marching band and we were competitive," she said. "After the diagnosis, I couldn't do any of that any more. It took a portion of my childhood away."

Reynolds, of Provo, said that in addition to bouts of survivor's guilt, she has recurrent low levels of potassium and magnesium, which lead to painful leg cramps. Months spent receiving dose after dose of chemotherapy left her listless and unable to move as a young teen. That stiffness has lingered, causing back pain and related migraines on occasion.

"My energy level has never been the same," she said, adding that her immune system is similarly compromised — a result of the cancer and harsh treatment schedule used to kill it.

But she does her best to be healthy, including a healthy diet and regular exercise. Reynolds grew up in Washington and keeps in contact with her doctors there, as well as doctors managing her condition in Utah.

Because cancer treatment as a child might not always show up on a medical records request as an adult, it is important to keep those records current, Reynolds said. She has run into issues trying to get doctors to take her seriously, but she's grateful for all that medicine has done for her.

"It's hard. It's the battle of your life, but it's worth it," she said. "Don't give up."

With its recent report, the American Cancer Society is emphasizing the importance of continuity of care, but for all aspects of a patient's life.

"For all these children and their families, treating the pain, symptoms and stress of cancer is as important as treating the disease," said Rebecca Kirch, director of quality of life and survivorship for the American Cancer Society. She said more support should be in place for kids "addressing the psychological, emotional and physical stresses related to treating cancer, focusing on the quality of life for the child and family to help them find their way."

The national organization is working to ensure that "whole person" care is available and is seen as an important part of treatment.

Email: wleonard@deseretnews.com

Twitter: wendyleonards

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