doctor instructing patient in office

When a patient’s active cancer treatment ends, this doesn’t mean the cancer journey is over. As survivors transition out of active treatment, they – and their primary care providers – need to carefully monitor their health.

For example, cancer survivors may face recurrence and are more likely to develop other cancers, meaning they need to be vigilant about getting appropriate screening tests. Many survivors also develop health problems related to their cancer treatment, such as heart issues or infertility, that don’t show up until later – known as late effects .

Ensuring survivors are getting the long-term follow-up care they need is becoming increasingly important as this population is growing and living longer. To provide a better quality of life for these patients, several organizations in recent years have put together guidelines for their care.

An expert panel discussed these guidelines and ways to make them more effective at the 7th Biennial Cancer Survivorship Research Conference, convened June 18-20 by the American Cancer Society, National Cancer Institute, LIVESTRONG Foundation, and Centers for Disease Control and Prevention.

The panelists, including leadership from LIVESTRONG, the National Cancer Institute, and the American Cancer Society, expressed enthusiasm about the increasing amount of guidance available for cancer survivors’ health care, but pointed out that many patients and doctors remain unaware of these resources.

Julia Rowland, Ph.D., director of the office of survivorship at the National Cancer Institute, provided insights into the cancer survivor guidelines landscape:

  • The American Society of Clinical Oncologists (ASCO) Survivorship Guidelines: These are guidelines for specific types of problems – or symptoms – cancer survivors may have, such as fatigue and depression. Rowland said ASCO “did not want to reinvent the wheel, but looked instead at what is out there that they can endorse.”
  • The National Comprehensive Cancer Network Clinical Practice Guidelines in Oncology for Survivorship: Released in March of 2013, these guidelines cover eight areas – anxiety and depression, cognitive function, exercise, fatigue, immunizations and infections, pain, sexual function, and sleep disorders . They are geared toward physicians and include a sample assessment tool.
  • LIVESTRONG Essential Elements of Survivorship Care: Based on the consensus recommendations from a 2011 meeting of 150 key cancer survivor experts, LIVESTRONG compiled a prioritized list of 20 “essential elements of survivorship care.” The most important of these are what the group called “tier 1” elements. At the top of that list is a survivorship care plan – a “psychosocial care plan and treatment summary.” One meeting participant referred to the essential elements as “a bill of rights for cancer survivorship.”
  • The American Cancer Society’s Prostate Cancer Survivorship Care Guidelines: These guidelines are the newest on the scene, published June 2014, and the first in what the Society intends to be a series of cancer-type-specific guidelines. All of the guidelines in the series are going to be geared to primary care doctors and provide recommendations for diet and exercise, cancer screening tests, managing side effects, and coordinating care.


A major hurdle is getting information about the issues survivors face into the hands of primary care doctors. Awareness is one problem. American Cancer Society Chief Cancer Control Officer Richard Wender, M.D., noted that many primary care physicians are actually not aware that symptoms, such as fatigue, are common among survivors.

But, even for those doctors who are aware, most still don’t feel knowledgeable enough on the topic. “A big challenge is many providers know they should be doing these things, but it isn’t something they have been schooled in and they don’t know how to give expert consultations,” said Mary McCabe, R.N., director of the cancer survivorship initiative at the Memorial Sloan Kettering Cancer Center.

Doctors, though, desire more information, according to Wender. “Practitioners are hungry to really get greater insight and guidance into their role in helping cancer survivors live their highest quality life and address some of these symptoms.”

The panelists also said that patients too need to be armed with as much information about their follow-up care as possible. “All of these guidelines are going to be translated for patients and families because they [the authoring organizations] recognize these need to be in the hands of both parties,” Rowland said.

More broadly, the panelists expressed the need for a more integrated, patient-centered approach to cancer survivorship care – which should also include insurance companies. Panelist Patricia Ganz, M.D., director of the patients and survivors program at the UCLA Jonsson Comprehensive Cancer Center, said that survivors’ treatment summaries and care plans can be a communication vehicle for providers, patients, and insurers. Doctors, Ganz noted, can send the patient’s care plan, along with a set of survivorship guidelines to support what is outlined in the plan, to an insurance company to get their care approved.

Ultimately, the panelists concluded that these guidelines and care plans are on a path to creating a common language and approach to survivorship care, but greater adoption and more consistent use is needed.