What Is a Survivorship Care Plan?

A survivorship care plan has two halves, and NCI keeps them separate for a reason.

The first half is the treatment summary. That is a written record of what was done. The second half is the follow-up care plan. That is a summary of treatment, plus recommendations for care after treatment ends. NCI states that both together are what is called a survivorship care plan.

The plan may also cover other needs. Those can be emotional, social, or financial. NCI puts it this way. The plan holds all the details a person and their doctor should discuss, so regular care continues after treatment ends.

The instruction is not optional in NCI's language. All cancer survivors should have follow-up care. And once treatment ends, a person should receive a follow-up cancer care plan. It comes from the oncologist, or someone on the treatment team.

This is the part worth checking line by line. A gap here becomes a gap in every future medical visit. NCI lists the types of health information the summary should contain.

• The date of diagnosis.
• The type of cancer.
• Pathology reports describing the type and stage in detail.
• Places and dates of each treatment. That means details of all surgeries. It means the sites and total amounts of radiation therapy. And it means the names and doses of chemotherapy and all other drugs.
• Key lab reports, X-ray reports, CT scans, and MRI reports.
• A list of signs and symptoms to watch for, and possible long-term effects of treatment.
• Contact information for all health professionals involved in treatment.
• Any problems that occurred during or after treatment.
• Any supportive care received during treatment. That covers medicines for depression or anxiety, emotional support, and nutritional supplements.

Notice the two items in bold above. Total radiation dose and cumulative chemotherapy doses are specific numbers. They are what sets late-effect risk years later. A summary might say "radiation to the chest" with no dose. Or "anthracycline chemotherapy" with no cumulative total. Neither can answer the questions a cardiologist or a new oncologist will ask in a decade.

NCI's advice on storage is deliberately low-tech. Keep the treatment summary somewhere safe, in case it is needed years later. Many people keep it in a binder or folder with their medical records. That way key facts stay together. If a primary care doctor keeps electronic records, find out how to reach them when needed.

Every schedule is individual. NCI says how often someone returns depends on three things. The type of cancer. The treatment received. And overall health, including possible treatment-related problems.

But there is a general pattern, and it comes with figures. Most people return for follow-up appointments every 3 to 4 months during the first 2 to 3 years after treatment. After that, it is once or twice a year. Visits may include a physical exam, blood tests, and other tests or procedures. Which tests, and how often, rests on what the doctor judges best when writing the plan.

This is the least discussed and most practical part.

After treatment, follow-up cancer care can come from three places. The oncologist who gave the treatment. A provider who specializes in survivor follow-up. Or a primary care doctor. NCI is clear on one point. Routine primary care should continue alongside cancer follow-up, not instead of it.

Then comes the warning. NCI says to ask each doctor to share notes with the others. It adds something blunter. Once a person picks which doctor to see, it may fall to them, or a loved one, to make sure the doctors actually talk. NCI gives its reason. Some research has shown that treatments or tests ordered by one doctor are sometimes not shared with the other.

The specific ask is small, and worth making out loud. Request that both doctors send clinic visit notes to each other. NCI admits this creates an extra step for the patient. It says the step matters anyway.

NCI provides a list, and it is broader than most people expect. Any new symptom, pain, or concern that will not go away belongs on it. So do these.

• Physical problems that interfere with daily life. Fatigue. Problems with bladder, bowel, or sexual function. Trouble concentrating, or memory changes. Trouble sleeping. Weight gain or loss.
• Any new medicines, vitamins, herbs, or supplements.
• Changes in the family medical history.
• Emotional problems, including anxiety, excessive worrying, or depression.

That third item is easy to overlook. A relative's new cancer diagnosis can change genetic testing advice for a survivor. That is why family history belongs on a follow-up agenda, not only at diagnosis.

NCI also offers a reassurance worth repeating. A new symptom does not necessarily mean the cancer has come back. It notes that it is normal to fear every ache and pain. These may just be problems a doctor can easily address. At the same time, NCI says to watch for health changes between scheduled visits, and to report problems right away. The doctor can then decide whether they relate to the cancer, the treatment, or something else.

Some cancer treatments cause problems that do not appear for months or years. NCI calls these late effects. It states that they are specific to certain types of treatment, and to the dose received.

That single sentence explains the whole design of a treatment summary. Which late effects to watch for cannot be worked out without knowing which treatment, and how much. NCI says the doctor should discuss late effects as part of the follow-up conversation. It adds that early medical attention can reduce the problems they cause.

When a follow-up care plan is handed over, NCI states that answers to these questions should be provided:

• How long will it take to feel more like myself?
• Which doctors should I see for follow-up care, and how often?
• What symptoms should I watch out for?
• What tests do I need after treatment is over, and how often?
• What long-term health issues might result from my treatment?
• What is the chance the cancer will return?
• What records do I need to keep about my treatment?
• What can I do to be as healthy as possible?
• Can you suggest a support group?

NCI suggests writing these down beforehand, and taking notes or recording the conversation to refer back to.

Some cancer centers and hospitals run programs built for long-term follow-up care. NCI notes that many NCI-Designated Cancer Centers offer one. So do many large community treatment centers.

For published guidance, NCI points to several sources. The American Society of Clinical Oncology provides care plans and follow-up guidelines for survivors. The Children's Oncology Group is an NCI-supported clinical trials group. It offers long-term follow-up guidelines for survivors of childhood, adolescent, and young adult cancers. It also publishes fact sheets called Health Links. The OncoLife Survivorship Care Plan came from Livestrong and the University of Pennsylvania. It builds a personalized plan from information entered online, and has a companion version for childhood cancer survivors. NCCN publishes patient guidelines on survivorship topics, including healthy lifestyle and late effects.

NCI adds one caveat about all of them. They can help structure a conversation with a doctor. They are not meant to replace that doctor's knowledge or judgment.

Related pages: follow-up care after cancer treatment covers the appointments themselves, late-effects-of-cancer-treatment covers what the dose records are for, and survivorship covers the wider territory.

• NCI — Follow-Up Medical Care