Many cancer survivors face a “now what?” moment at the end of treatment. What are the long-term side effects? How often should follow-up tests be done? What can be expected on the way to recovery? Unfortunately, when it comes to post-treatment care, the needs of many survivors are not recognized or addressed, Cancer Today reports. 

Currently, there are an estimated 15.5 million cancer survivors in the United States, and studies show that less than half of cancer patients treated at top U.S. cancer centers receive a survivorship care plan. What’s more, clinical trials evaluating post-treatment care plans show that many of these programs do not actually improve the quality of patients’ lives. And, as many patients well know, cancer experts say not all primary care physicians are prepared to treat the long-term side effects of cancer and its therapies.

These revelations aren’t new. In 2005, researchers at the Institute of Medicine published a 506-page paper overviewing the problem and made several recommendations to help health care providers, researchers and insurers keep survivors from falling through the cracks.

Experts suggested, for example, providing a post-care roadmap for people transitioning from patient to survivor, thoroughly explaining the potential short- and long-term effects of cancer therapy and providing a comprehensive schedule of tests needed to look for recurrence. However, 13 years later, many doctors say plenty of cancer patients remain adrift.

What are the problems many cancer survivors face post-treatment? Many cancer survivors have to redo all their childhood vaccinations, for example. Others are unsure of when—or unaware that—they need to come in for follow-up testing. Others must contend with long-term side effects like recurring pain, depression, insomnia, fatigue as well as other illnesses and are unsure where to turn for help.

Hospitals can encounter several barriers when trying to implement survivorship plans. For starters, sorting through a patient’s medical records in order to make them a specially tailored roadmap is extremely labor-intensive. Other impediments include an overtaxed medical system, a shortage of primary care physicians trained in oncology and a growing wave of cancer survivors to keep pace with—a dark side to the much higher efficacy of next-generation treatments.

“Survivorship care plans are really only a vehicle for trying to frame care that the patient needs,” said Lawrence N. Shulman, an oncologist at the Abramson Cancer Center at the University of Pennsylvania and the chair of the American College of Surgeons Commission on Cancer. “The thing that I keep coming back to in my own mind is if you do this long enough and you talk to enough survivors, it’s clear that this is still an area where we are falling short.”

To learn more about managing your life as a cancer survivor, click here.