Medical Care after Cancer Treatment
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Completing cancer treatment is a major milestone and reason for celebration. It's also a time to start thinking about follow-up care. Knowing what to expect after cancer treatment can help you and your family make plans, lifestyle changes and important decisions.
Many survivors report that getting involved in decisions about follow-up care helped them regain some of the control they felt they lost during cancer treatment. Research has shown that people who feel more in control function better than those who do not. Being an active partner with your physician and getting help from other members of your health care team is the first step.
What is follow-up care exactly?
Follow-up care means seeing a doctor for regular medical checkups. Your care will depend on the type of cancer and type of treatment you had, along with your overall health. It is usually different for each person who has been treated for cancer.
In general, survivors usually return to the doctor every three to four months during the first two to three years after treatment, and once or twice a year after that. At these visits, your doctor will look for side effects from treatment and check to see if your cancer has returned or spread to another part of your body. He or she will also review your medical history, give you a physical exam and possibly run follow-up tests such as blood tests, MRI or CT scans.
During your first follow-up visit, make sure to talk with your doctor about your follow-up schedule. Besides visits to the doctor and medical tests, your care might also include services such as occupational or vocational therapy, pain management, physical therapy and support groups.
Medical records and follow-up care
When you complete your cancer treatment, ask your oncologist for a written summary about it. In the summary, he or she can suggest what aspects of your health need to be followed. Then share this summary with any new doctors you see, especially your primary care doctor, as you discuss your follow-up care plan.
Many people keep their medical records in a binder or folder and refer to them as they see new doctors. This keeps key facts about your cancer treatment in the same place. Other kinds of health information you should keep include:
- The date you were diagnosed
- The type of cancer you were treated for
- Pathology report(s) that describe the type and stage of cancer
- Places and dates of specific treatment
- Details of all surgeries
- Sites and total amounts of radiation therapy
- Names and doses of chemotherapy and all other drugs
- Key lab reports, X-ray reports, CT scans and MRI reports
- List of signs to watch for and possible long-term effects of treatment
- Contact information for all health professionals involved in your treatment and follow-up care
- Any problems that occurred during or after treatment
- Information about supportive care you received (such as special medicines, emotional support, and nutritional supplements)
Which doctor to see now? How often?
You'll need to decide which doctor will provide your follow-up cancer care and who you'll see for other medical care. For follow-up cancer care, this may be the same doctor who provided your cancer treatment. For regular medical care, you may decide to see your main provider, such as a family doctor. For specific concerns, you may want to see a specialist. This is a topic you can discuss with your doctors, and they can help you decide how to make transitions in care.
Depending on where you live, it may make more sense to get follow-up cancer care from your family doctor, rather than your oncologist. It's important to note that some insurance plans pay for follow-up care only with certain doctors and for a set number of visits.
In coming up with your schedule, you may want to check your health insurance plan to see what follow-up care it allows. No matter what your health coverage situation is, try to find doctors you feel comfortable with.
Always tell any new doctors you see about your history of cancer. The type of cancer you had and your treatment can affect decisions about your care in the future. They may not know about your cancer unless you tell them.
Talking With Your Doctor
During cancer treatment, you probably had a lot of practice in getting the most out of every doctor's visit. These same skills now apply as a survivor and are especially helpful if you are changing doctors or going back to a family or primary care doctor you may not have seen for a while.
It is important to be able to talk openly with your doctor. Both of you need information to manage your care. Be sure to tell your doctor if you are having trouble doing everyday activities, and talk about new symptoms to watch for and what to do about them. If you are concerned that the treatment you had puts you at a higher risk for certain health problems, be sure to discuss this with your doctor as you develop your follow-up plan.
At each visit, mention any health issues you are having, such as:
- New symptoms
- Pain that troubles you
- Physical problems that get in the way of your daily life or that bother you, such as fatigue, trouble sleeping, sexual problems, or weight gain or loss
- Other health problems you have, such as heart disease, diabetes or arthritis
- Medicines, vitamins, or herbs you are taking and other treatments you are using
- Emotional problems, such as anxiety or depression, that you may have now or that you've had in the past
- Changes in your family's medical history, such as relatives with cancer
- Things you want to know more about, such as new research or side effects
Getting the Most From Your Follow-Up Visits
Here are some ideas that have helped other people with their follow-up care:
- Ask someone to come with you to your doctor visits. A friend or family member can help you think about and understand what was said. He or she also may think of new questions to ask.
- Make a list of questions ahead of time and bring it with you.
- Take notes or ask if you can tape-record the answers.
- Ask your most important questions first, in case the doctor runs out of time.
- Don't be afraid to ask for more time when you make your next appointment. Or ask the doctor to suggest a time when you could call and get answers to your questions.
- Ask to talk with the doctor or nurse in a private room with the door closed.
- Express yourself clearly.
- Describe your problem or concern briefly.
- Tell the doctor how your problem or concern makes you feel.
- Ask for what you want or need, for example, "I am tired most of the time each day. I've tried napping, but it doesn't help. My fatigue gets in the way of my daily life. What can be done to help me with this problem?"
- Tell your doctor if you need more information.
- Ask for booklets or other materials to read at home.
- Ask the doctor to explain what he or she said in terms you understand.
- Repeat back in your own words what you think the doctor meant.
- Ask your doctor or pharmacist about the best way to take your medicine and about possible side effects.
- Keep your own set of records about any follow-up care you have.
–Article adapted from National Cancer Institute materials