Cancer in a child, adolescent or young adult is relatively rare. But the world of a pediatric oncologist like myself, is different – I see kids and young adults with cancer every day. I see them through their initial diagnosis and months or years of treatment. But when the cancer directed therapy is done, my job is not over. I see them for years after the end of their treatment. In fact, when my patients and their parents start asking me about when they can stop coming to the oncologist, I tell them that they are part of our family for life. Why?

The treatment for childhood cancer varies based on the cancer type, but may include surgery, radiation therapy, and chemotherapy. For many types of childhood cancers, we have excellent cure rates. However, these often come at a price. At least 50% of survivors of childhood cancer will deal with some type of long term side effect as a result of their treatment. We call these “late effects.” The damage done by treatment might not rear its ugly head until 1, 5, 10, 20 years after the treatment is finished.

What types of side effects are we talking about? A wide variety; including damage to the heart, lungs, kidneys, and liver. Risks to these organs are carefully watched and balanced throughout treatment, but sometimes the damage in unavoidable, or doesn’t show up until later. Some patients will have hearing loss or learning difficulties. Others will experience loss of limb, or infertility. Some cancer treatments actually put patients at risk for developing second cancers years later.

This all sounds very grim, and it should be taken seriously, but there is good news on the flip side. Oncologists and scientists know more about these late effects than we ever have before and are actively seeking ways to minimize side effects while continuing to increase cure rates. And the focus in oncology is no longer just on achieving cure, but on taking care of the whole patient – mind, body, and spirit. There are also more and more support groups for survivors, including groups focused specifically on the health and well-being of survivors of childhood cancers, and adolescents and young adults with cancers. These groups, along with the oncologists, can be a great source of information and social support.

What would I say is the most important thing to remember? Find a healthcare provider who knows what you need as a survivor! Not everyone is familiar with the treatments that you’ve gone through, and is aware of what you need to stay healthy as a survivor. So ask questions of your physician, don’t be afraid to voice your concerns, and make sure you are getting the specialized care you need. Then get out, live your life, and thrive in spite of a cancer diagnosis!

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