Questions to Ask at the End of Treatment

The last infusion gets a bell. The visit after it usually gets 15 minutes, and it is the one that has to carry the next ten years.

NCI describes the transition bluntly. Survivors often feel relief mixed with anxiety and sadness, and many feel a little lost, not knowing what to do next. One survivor quoted by NCI compared it to entering another world. That is a normal reaction to losing a weekly schedule that someone else was managing.

Go into that visit with a written list. Here is what belongs on it.

This is the single most valuable document you will leave with, and NCI is specific about what it should contain:

• Date of diagnosis and the cancer type
• Pathology findings
• Dates of each treatment
• Details of all surgeries
• The sites and total amounts of radiation therapy
• The names and doses of chemotherapy
• Signs and symptoms to watch for
• Possible long-term effects of your treatment
• Contact information for your health care team

Radiation dose and site, and chemotherapy drug names and doses, are the items future doctors will need most. A cardiologist seeing you in 2038 cannot assess your heart risk without knowing whether you received an anthracycline and how much chest radiation you had. Keep the summary in a binder or folder, not only in a patient portal you may lose access to.

NCI describes a common pattern: visits every 3 to 4 months for the first 2 to 3 years after treatment, then once or twice a year after that. Visits usually include a physical exam, bloodwork, and tests chosen for your cancer type and treatment history.

Ask for the specifics rather than the pattern. Which scans, at what intervals, and for how many years? Which blood tests, and what would an abnormal result trigger? When does the schedule step down, and what has to be true for that to happen?

This question only works if it is specific. NCI organizes late effects by body system, and each one traces back to a particular treatment.

• Heart. Certain cancer drugs and radiation to the chest can cause heart problems that do not appear until years later, including congestive heart failure and coronary artery disease.
• Ears. Cisplatin, high doses of carboplatin, and high-dose radiation to the brain can cause ringing in the ears or hearing loss.
• Bones. Chemotherapy, steroids, hormonal therapy, and radiation can thin bone. Radiation-related bone loss happens only in the treated area.
• Endocrine. Treatment can damage the thyroid, ovaries, and testes, causing infertility, early menopause, and thyroid disorders.
• Brain. Some chemotherapy drugs and radiation to the brain can cause memory loss, trouble concentrating, slow processing, difficulty with math, and personality changes.
• Lungs. Chemotherapy and chest radiation can produce shortness of breath and cough years afterward.
• Eyes. Chemotherapy, hormone therapy, immunotherapy, and steroids can raise cataract risk.
• Joints. Radiation, some chemotherapy drugs, and steroids can create scar tissue that limits movement.
• Mouth. Radiation to the head and neck causes dry mouth, cavities, and loss of bone in the jaw.

Take your treatment list and go down this list with your oncologist. Cross off what does not apply to you. What remains is your personal monitoring plan.

Several follow-ups belong to other specialists, and nobody will book them for you.

• Audiology. NCI advises at least one visit with an audiologist after finishing treatment if you received the drugs above.
• Dentistry. After head and neck radiation, NCI describes having teeth checked every 1 to 2 months for at least 6 months.
• Ophthalmology. Routine eye visits if you are at risk for cataracts.
• Bone density testing. Part of regular check-ups when bone loss is a risk.

Ask this before flu season arrives. CDC states that live attenuated vaccines should not be given for at least 3 months after immunosuppressive therapy ends. That covers MMR, varicella, the nasal-spray flu vaccine, and others. Get the restart date in writing, and ask whether any vaccines you received during treatment need to be repeated.

NCI puts this responsibility somewhere uncomfortable. It says it may be up to you or a loved one to make sure each doctor communicates with the others about your care.

So make the request concrete. Ask that your oncologist and your primary care provider send each other clinic visit notes. Ask which office orders your surveillance scans, and which one reviews them. Ask for a named phone number for questions that come up between visits.

NCI's general rule for survivors is to report new symptoms that last longer than a few weeks. Beyond that, ask for a list tailored to your cancer, since a recurrence pattern differs by disease.

Ask specifically about second primary cancers. NCI notes that treatment can sometimes cause a new cancer many years later, that this does not happen often, and that the response is lifelong check-ups rather than alarm.

NCI calls fear of recurrence the most common fear survivors have, and names scanxiety, the anxiety that builds before imaging. It also notes that the fear often lessens over time.

Practical options NCI lists: keeping a symptom diary, counseling or therapy, in-person or online support groups, peer support with other survivors, exercise, meditation, nutrition help, and spiritual resources. Ask which of these your cancer center offers directly, since programs attached to your center usually cost less and require no new referral.

Bring the eight questions above on paper. Ask for the treatment summary first, because it is the document everything else hangs on, and because it takes the longest to produce.

• https://www.cancer.gov/about-cancer/coping/survivorship/follow-up-care
• https://www.cancer.gov/about-cancer/coping/survivorship/late-effects
• https://www.cancer.gov/about-cancer/coping/survivorship/new-normal
• https://www.cdc.gov/vaccines/hcp/imz-best-practices/altered-immunocompetence.html