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Childhood Cancer Survivors Turn to Primary Care as Adults


Adults who have survived childhood cancer are at high risk for serious illness but typically are not followed by an adult oncologist. You may be the first to see suspicious signs. Would you know how to proceed?

Results of a new survey published in the Annals of Internal Medicine, found that most general practitioners and family physicians are uncomfortable treating adult survivors of childhood cancers. In fact, only 12% said they were “somewhat familiar” with guidelines for monitoring these patients. That doesn’t augur well since most childhood cancer survivors are not followed by oncologists. And, as treatment for childhood cancers continues to improve, primary care practitioners will see increasing numbers of adult survivors.

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Lisa Diller, MD, chief medical officer of the Dana-Farber/Boston Children's Cancer and Blood Disorders Center, and founder and director of the David B. Perini Jr. Quality of Life Clinic, was recently interviewed by Medscape Medical News on the survey results. She offered the following tips to help guide family practitioners, internists, and other primary care physicians who may see adult childhood cancer survivors.


♦ Obtain a treatment summary from the patient or contact the appropriate pediatric treatment center

♦ Summary provides what drugs the patient received and what dosage, whether they’ve had radiation and where, and any surgeries 

♦ An adult oncologist may be able to reconstruct a summary if neither the patient nor the treatment center can provide it 

♦ Refer to the Children's Oncology Group guidelines for monitoring survivors of pediatric cancers

♦ Guidelines list cancer treatments that have been common for several decades, associated risks, screening recommendations


♦ From the 1970s to the 1990s between 66% and 75% of children received radiotherapy which is associated with significant morbidity

Chest radiation  

♦ Chest radiation raises risk for pulmonary fibrosis, heart valve disease, early coronary artery disease

♦ Women should have earlier mammography screening with the inclusion of breast MRI

♦ Smoking greatly increases cancer risk in those who have had chest radiation

Brain and neck radiation  

♦ Brain radiation can lead to neuroendocrine disruption and is linked to learning issues, impaired vocational success, and poor organizational skills

♦ Neck radiation increases the risk for thyroid failure and adults should be screened for hypothyroidism

Radiation below the belt

♦ Pelvic radiation increases the odds of ovarian failure and pregnancy complications 

♦ Previous abdominal radiation should trigger early screening for colon cancer

Chemotherapy-late-stage effects 

♦ Anthracyclines (eg, doxorubicin) received in childhood should prompt cardiac screening

♦ Beta-blockers and/or ACE inhibitors should be prescribed if patients show early signs of asymptomatic left ventricular dysfunction

♦ Men treated with alkylating agents are at risk for low sperm count; should have semen analysis when ready to become fathers

♦ Ovaries of women who received alkylating agents may have limited reserve

♦ Refer to a fertility specialist after 6 months of unsuccessful attempts to conceive (vs typical 12 months)

♦ Women also may experience early menopause


♦ Risk for metabolic syndrome is double in cancer survivors who do not follow guidelines for healthy diet and exercise

♦ Overweight and obesity stress hearts weakened by chemotherapy  

♦ Cigarette smoking increases risk for coronary artery disease from high cholesterol and plaque

"I envision the development of a subspecialty," says Dr Diller, "either of doctors or nurse practitioners, who deal with cancer patients outside the care of an oncologist and who are trained in survivorship, know a lot about treatment, and know about supportive, palliative, and nutritional care in survivors.”

Until then, primary care will most likely be the first place an adult survivor presents and practitoners should be prepared to take the next appropriate step.

Please tell us about any experience you have had with adult survivors of childhood cancer. What did you learn? What advice would you offer to colleagues?

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