Kim Painter, USA TODAY
Updated 10:39 a.m. EST Feb. 15, 2019
When Susan Leigh finished treatment for Hodgkin lymphoma back in 1972, she says, “no one knew what was going to happen.”
Certainly, no one knew that the Arizona woman would develop three more cancers and heart damage, all likely linked to the aggressive radiation and chemotherapy treatments that helped save her life.
Those treatments were new at the time. When Leigh finished them, apparently cancer-free, she was a pioneer.
“I remember saying to my radiation doctor, what do I do now?" recalls Leigh, 71, a retired cancer nurse. "What do I do to keep this from coming back and to recover?
"He said he really didn’t know. He said maybe I could try taking a good multivitamin pill.”
Four decades later, doctors know much more. They know that some cancer survivors are at increased risk for other cancers later, and for problems ranging from brittle bones to heart failure.
They also know more about how to help patients head off or manage those risks.
But few patients are getting that help – even 13 years after the influential Institute of Medicine warned that many survivors were “lost in transition,” and weren't getting adequate follow-up care.
“The number of cancer survivors continues to grow, yet high-quality, coordinated survivorship care is still infrequent,” experts from the National Academies of Sciences, Engineering, and Medicine said in a recent follow-up report (the nonprofit includes the former Institute of Medicine).
“Strides have been made, but there’s also been an acceleration in the demand,” says Neeraj Arora, associate director for science at the nonprofit Patient-Centered Outcomes Research Institute.
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