What to Expect at a Survivorship Visit

During treatment, appointments are about the treatment. A survivorship visit is about everything treatment left behind, and about the years ahead.

The National Cancer Institute (NCI) defines follow-up care simply as "seeing a health care provider for regular medical check-ups once you're done with treatment." What those checkups cover is broader than people expect. NCI says visits may include "bloodwork, as well as other tests and procedures that look for changes in your health or any problems that may occur due to your cancer treatment," and that they address "physical and emotional problems that may occur months or years after treatment ends."

Knowing the agenda in advance is the difference between leaving with answers and leaving with only a date.

NCI's national standards for survivorship care set out what these programs should do. Use them as a checklist for your own appointment.

Surveillance and screening. You should be "assessed for their risk of recurrence or new cancers, including family history and genetic testing," and given recommendations and referrals for watching for both.

Long-term and late effects. You should be "assessed at multiple points in their follow-up care for physical effects during and following cancer treatment, including monitoring for late effects and chronic conditions."

Psychosocial care. You should be "assessed at multiple points in their follow-up care for emotional and psychological effects of cancer and its treatment and provided with treatment and/or referrals."

Health promotion. You should be "assessed for lifestyle behaviors and provided with recommended strategies for management and appropriate referrals."

Care coordination. You should be "engaged in the care planning process including discussion of shared goals of care" and coordination with other providers and services.

If your visit touches only the first area, you have had a recurrence check rather than a survivorship visit. It is reasonable to ask for the rest.

Ask for two written things: a summary of what was done to you, and a plan for what happens next. NCI says your oncologist should provide "a summary of your treatment, along with recommendations for your cancer care after treatment ends."

NCI lists what belongs in the record:

• "the date you were diagnosed"
• "the type of cancer you had"
• "pathology report(s) that describe the type and stage of cancer in detail"
• "the sites and total amounts of radiation therapy"
• "the names and doses of chemotherapy and all other drugs"

Those last two matter more than they look. Late effects are tied to specific drugs and radiation doses. A cardiologist in fifteen years cannot judge your heart risk from "she had chemo." They can from a drug name and a dose.

Keep a copy yourself. Do not rely on one hospital's system holding it forever.

NCI gives a general pattern: "survivors usually return to the doctor every 3 to 4 months during the first 2 to 3 years after treatment, and once or twice a year after that."

Your own schedule depends on the cancer type, the treatment you had, and your health. Visits become less frequent as time passes. That is intended, not neglect. If the widening gap makes you anxious, say so, and ask what would bring you back sooner.

NCI defines late effects as problems that "may not show up for months or years after treatment" and notes they are "specific to certain types of treatments and the dose received."

The examples NCI gives are concrete:

• Fatigue that persists after treatment ends.
• Memory and concentration problems, "sometimes called 'chemobrain.'"
• Nerve damage causing "tingling, burning, weakness, or numbness."
• Lymphedema, "a swelling of a part of the body caused by the buildup of lymph fluids."

Ask which late effects apply to your treatment specifically. NCI's advice is that doctors should discuss "which late effects to watch for," which means you should leave with a short personal list, not a general leaflet.

Many people arrive expecting scans and are unsettled when there are none. Tests at follow-up visits are chosen for your cancer type and treatment. More testing is not automatically better.

So ask directly: which tests are part of my follow-up plan, which are not, and why? Ask what a rising number would mean, and what symptom would make you order a test sooner.

The same applies to screening for entirely new cancers, which is separate from watching for the old one returning. Ask whether your regular screenings, and any extra ones your treatment history calls for, are on someone's list.

Not everyone stays with an oncologist forever. NCI notes that some survivors get follow-up care from family doctors instead, depending on where they live and their insurance.

That transition is where things get dropped. Ask three things: who is responsible for what, who orders which tests, and who gets copied on results.

NCI's most portable piece of advice is this: "always tell any new doctors you see about your history of cancer." Carry the treatment summary to appointments that have nothing to do with cancer. A new symptom reads differently in someone with your history.

NCI says to report "any symptoms, pain, or concerns that are new or that won't go away" rather than saving them for the next appointment.

Two practical habits help. Keep a running note of symptoms with dates, because a three-week cough is a different thing from a three-day one and you will not remember which it was. And ask at every visit who to call between visits, since that number often changes once you leave active treatment.

• Your treatment summary and survivorship care plan, if you have them.
• A current list of all medicines, vitamins, and supplements.
• A list of every symptom since the last visit, with dates.
• Names and contact details for your primary care doctor and any other specialists.
• Your family history of cancer, updated. It affects genetic risk assessment.
• Questions written down, in priority order.

• What exactly am I being watched for, and how would it be detected?
• Which late effects should I expect from my specific treatment and doses?
• What tests am I due, on what schedule, and which am I not having?
• Which routine cancer screenings do I still need, and do I need any earlier than usual?
• Is my family history worth a genetics referral?
• Who is in charge of my follow-up now, and what does my primary care doctor handle?
• What symptoms should make me call rather than wait?
• Can I have my treatment summary in writing today?

• National Cancer Institute — Follow-Up Medical Care.
• National Cancer Institute — Facing Forward: Life After Cancer Treatment.
• National Cancer Institute — National Standards for Cancer Survivorship Care.

Helpful next pages include What Happens When Cancer Treatment Ends?, Follow-Up Care After Cancer Treatment, What Follow-Up Care Watches For After Cancer, Childhood Cancer Late Effects: Questions for Follow-Up, Balance and Fall Prevention After Cancer Treatment, What to Expect Before Starting Radiation.