Cancer survivor Gwen Ihm, right, is hugged by her sister, Elizabeth

More is needed for childhood cancer survivors

As Childhood Cancer Awareness Month closes, we celebrate those who have beaten the disease. But for most, an arduous path lies ahead.

John Locke’s Law of Unintended Consequences dates back to the 1600s. Often cited, the law says that actions always have effects that are unanticipated or unintended.

Locke’s law couldn’t be truer for childhood cancer survivors today.

Survivorship is a significant milestone that has accelerated since the 1970s, when the cure rate was 50-60 percent. Today, four out of five children diagnosed with cancer will be cured.

This is good news for extending life away from the disease, but treatments — predominantly chemotherapy, radiation and surgery— have unintentionally caused a multitude of issues as survivors age.

Studies show that over two-thirds of childhood cancer survivors are living with chronic conditions and even life-threatening illness. As of 2010, there were 380,000 survivors living in the US, and projections call for a half-million survivors by 2020. The math adds up to a public health concern.

What chronic conditions do childhood cancer survivors face?

Childhood cancer survivors endure low-bone density, memory loss and cognitive changes, cataracts and other conditions — issues related to aging but decades earlier. They are susceptible to cardiovascular disease and second cancers, as well as neurological damage.

The bigger question is what can we do?

As we near a half-million survivors, it is critical to address these conditions at an earlier age. Cancer genomics can play a role in knowing why this is happening and how.

Also, harnessing new approaches rather than using the traditional chemotherapy and radiation can improve outcomes now, and later. Novel cancer treatments like CAR T-cell therapy (where engineered cells attack cancer cells in the body) can be promising alternatives.

This would address the chronic conditions for newly diagnosed patients. The remaining half-million survivors also need assistance. We should take the following approach:

  1. Develop programs dedicated to caring for childhood cancer survivors: Providers need to offer the appropriate services and predict what life is going to be like for this population. Follow their history and screen them appropriately. Psychosocial support is also necessary and very important to disease prevention and health promotion.
  2. Educate and train professionals: Physicians can serve as a resource for other medical professionals so they understand these challenges. Without education, they won’t be able to properly treat childhood cancer survivors.
  3. Conduct research: We need to better understand the ongoing risks. We need to know the underlying physiology happening in the body.

National screening guidelines were a big step forward in treating childhood cancer. There is more we can do, as it is often said: cure is extremely important, but in terms of childhood cancer, cure is not enough.

Jonathan Fish, MD, is a pediatric hematologist/oncologist at Cohen Children’s Medical Center and an associate professor of pediatrics at the Donald and Barbara Zucker School of Medicine at Hofstra/Northwell. He founded the Cohen Children’s Survivors Facing Forward program and hosts Northwell Health’s Les Nelkin Pediatric Cancer Survivor’s Day each year.

Cohen Children's pediatric hematology/oncology team treats all forms of cancer.