Developing a Survivorship Care Plan

Many patients are overwhelmed when they learn they have cancer, and studies show it's difficult for them to absorb information about their diagnosis. Then, as they focus on getting through treatment, they might not think to ask their health care teams about life beyond cancer.

The time after initial treatment ends has become recognized as its own, distinct phase of the cancer experience, and those who study cancer survivors have suggested a strategy for the ongoing clinical care of cancer survivors. At the heart of this strategy is a survivorship care plan (SCP), a document that includes details not only about the patient’s diagnosis and treatment, but also essential information needed for long-term follow-up care.

The SCP should officially switch a patient to a general physician who will provide primary care and routine disease screenings. Designed for discussion at the end of treatment, the SCP should include summaries of key diagnostic and staging results, treatments and dosages received and the potential late effects of those treatments. It should prompt discussion about recurrent and new cancers; genetic implications; possible long-term and late effects; explanations of legal rights affecting employment and insurance; recommendations for nutrition, exercise, lifestyle changes and rehabilitation; and referrals for psychological and support assessments.

WHO’S IN CHARGE?

With today’s complicated health care system, ever-changing insurance coverage and multiple specialists, it’s hard to keep up with medical history and long-term follow-up appointments, not to mention the standard medical needs associated with aging. More oncologists are connecting with patients’ primary care physicians after treatment because they will be assuming the survivor’s care after a set period of follow-up by the oncologist.

But many primary care doctors are not fully versed in the follow-up requirements for patients whose medical histories include cancer. Therefore, patients should be prepared to inform their primary care doctors about their unique needs or find physicians willing to collaborate with their oncologists to better understand those needs.

WHERE AND WHEN TO BEGIN?

It’s never too soon to start gathering the information that will become part of the SCP. A number of organizations offer plans that can be accessed online.

• The Abramson Cancer Center of the University of Pennsylvania (oncolink.org/oncopilot)
• American Society of Clinical Oncology (cancer. net/survivorship/follow-care-after- cancer-treatment/asco-cancer-treatment-and-survivorship-care-plans)
• LIVESTRONG (tinyurl.com/j6rrllm)

Many SCPs are designed for use by health care professionals, but some are templates that can be adapted by patients.

At appointments with health care providers, patients should ask for relevant information or explanations of anything they do not clearly understand about their diagnosis and treatment. They might have to ask for copies of pathology reports and treatment drugs and dosages. They should ask health care personnel to translate medical terminology into understandable language.

After the SCP is completed, patients might want to make copies and have them available for other health care providers and family members.

As time progresses, patients should ask for updates to their SCPs at follow-up oncology appointments. A patient should be specific about any facts that are needed to complete the SCP, and question members of the health care team about decisions today that could have lingering effects long into the future. In addition, patients should:

• Be sure their family members understand any genetic implications cancer has for their lives.
• Ask if new information should be added, especially concerning late effects of drugs or radiation that were part of treatment and any associated tests or surveillance measures that are needed.
• Ask if any new information is available that could change plans for surveillance or prevention of cancer recurrence.