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Managing life after childhood cancer

OHSU Doernbecher clinic provides comprehensive care, support to help pediatric cancer survivors live their best lives
woman sitting on a hospital gurney, talking to doctor in doctor's office
Katherine Breithaupt, (left) who beat acute lymphoblastic leukemia as a child, utlilizes the services at the Doernbecher Cancer Survivorship Clinic. “Survivorship is a very important and exciting milestone that should be celebrated,” said Sue Lindemulder, M.D., (right) associate professor of pediatrics (hematology and oncology) at OHSU Doernbecher. (OHSU/Kristyna Wentz-Graff)

Amid brightly colored walls adorned with child-friendly artwork and inspirational sayings, Katherine Breithaupt waves to a group of familiar-faced nurses as she enters the pediatric hematology/oncology clinic at OHSU Doernbecher Children’s Hospital.

Although she beat acute lymphoblastic leukemia - a type of blood and bone marrow cancer -  more than two decades ago, Breithaupt, now 30, is here for a routine check-up.

Thanks to advances in medical diagnostics and treatment, more than 80 percent of children and adolescents diagnosed with cancer will one day reach remission.

“Survivorship is a very important and exciting milestone that should be celebrated,” said Sue Lindemulder, M.D., associate professor of pediatrics (hematology and oncology) at OHSU Doernbecher. “But unfortunately, being cancer-free doesn’t mean the end of a medical journey. For the majority of patients, it is often the start of a brand-new chapter of health care that could last a lifetime.”

nurse squatting next to a child who is receiving treatment for leukemia
Nurse Patsy Rash (left) with Breithaupt at the OHSU Doernbecher Children's Hospital hematology/oncology clinic, Jan. 1992. (Photo courtesy of Katherine Breithaupt)

While chemotherapy and radiation therapy are highly effective in treating many forms of cancer, Lindemulder says they can also be toxic to the body, causing long-term health impacts such as heart disease, infertility, dental issues or bone and joint problems.

Further, patients who battle cancer during childhood or adolescence often miss out on many common social experiences such as school, sports and gatherings with friends. This can cause feelings of isolation and may lead to developmental delays or emotional health challenges later in life.

To help cancer survivors navigate and manage the potential for ongoing health needs, Lindemulder and a collaborative team of health care providers, nurses, social workers, educational specialists, neuropsychologists, dentists and dietitians operate the Doernbecher Cancer Survivorship Clinic.

In addition to evidence-based insight about health impacts due to cancer treatment, the team provides information about mental health and educational issues ranging from re-entry into the public-school system following treatment, to obtaining insurance coverage or employment.

“We develop a personalized health care roadmap for everyone that visits our clinic based on their unique cancer experience and exposure to treatment. It includes recommendations for health screenings and check-ups, as well as risk for some of those longer-term health and social impacts,” says Lindemulder, who serves as the clinic’s director. “The goal is to empower both the patient, and their primary care provider, to feel confident about long-term wellness outcomes.”

This is why, as an adult, Breithaupt is still glad to visit the children’s hospital.

“I wanted to know what I could do to take care of myself going forward,” says Breithaupt, who visits the clinic every four years. “Because I have a personalized plan, I know what to look for and what questions to ask. While I may still have a long road ahead of me, my health is less of a mystery and I’m able to live my best possible life, cancer-free.”

The Doernbecher Cancer Survivorship Clinic sees patients every Friday at OHSU Doernbecher Children’s Hospital in Portland, Oregon, and one Monday per month in Salem, Oregon.



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