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February 2011 |
Follow-up Care
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All cancer survivors should have follow-up care. Knowing what to expect after cancer treatment can help you and your family make plans, lifestyle changes, and important decisions. Follow-up care means seeing a doctor for regular medical checkups.
In general, survivors should return to the doctor every 3 to 4 months during the first 2 or 3 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 if your cancer has returned or spread to another part of your body.
You will need to decide which doctor will provide your follow-up cancer care and which one(s) you will see for other medical care. For follow-up cancer care, this may be the same doctor who provided your cancer treatment. This is a topic you can discuss with your doctors.
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If you don't have health insurance, Medicare or Medicaid, you may feel that some of the information in this section will not be helpful to you. You may have struggled financially just to get treated and now see follow-up care as another battle. It can be hard to get care if you do not have good medical coverage, but you must make sure you continue to get the care you need - especially now that treatment is over.
There may be resources in your community to help you get these services. Talk to your doctor, social worker or the business office at your local hospital or clinic. There are also organizations listed in our Resource Guide that may be able to help with your health care costs.
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At your first follow-up visit, talk with your doctor about your follow-up cancer care plan.
At these visits, your doctor will:
- Review your medical history
- Give you a physical exam
Your doctor may run follow-up tests such as:
- Blood tests
- MRI or CT scans
- Endoscopy
Medical Records and Follow-up Care
Depending on where you live and your insurance plan, you may get your follow-up cancer care from your family doctor rather than your oncologist. Also be aware that insurance plans only cover certain doctors and a set number of visits. In coming up with your schedule, you may want to check with your health insurance plan to see what follow-up care it covers.
Be sure to ask your oncologist for a written summary of your treatment. 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.
Keep your medical records together in a convenient place such as a binder or folder so you can refer to them and take them with you as you see a new doctor. (See our section Managing Paperwork for helpful ideas in this area). Keep key facts about your cancer treatment here and other kinds of health information such as:
- The date you were diagnosed
- The type of cancer you were treated for
- Pathology report(s) that describe the type and stage of cancer
- List of prescribed and over-the-counter medicines you take
- Places and dates of specific treatment, such as: details of surgies, sites and total amount of radiation therapy, names and doses of chemotherapy, and key lab reports, x-rays, CT scans, MRI reports, etc.
- 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
- Types of vaccinations and immunizations you have had
- Information about ongoing health problems including dental issues
- List of allergies and sensitivities
- Information about diet and nutritional concerns
- Information about supportive care you received (such as special medicines, emotional support, and nutritional supplements)
- Facts about family’s medical history including cancer, diabetes, heart conditions, stoke and other issues
Your Health Care Follow-Up Plan
After cancer treatment, many survivors want to find way to reduce the chances of having their cancer return. Some are concerned that diet, stress, exposure to chemicals and lack of physical activity can all contribute to a higher risk of cancer.
You and your doctor need to develop a wellness plan that includes ways you can take care of your physical, emotional, social and spiritual needs.
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 having health problems, be sure to discuss this with your doctor as you develop your follow-up plan.
At each visit, mention health issue 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
** Remember, just because you have certain symptoms, it does not always mean that the cancer has returned. Some symptoms can be due to other problems that need to be addressed.
Your Doctor Visits
Preparation:
- Bring your binder or folder of medical records so you can refer to them when discussing past treatments and surgeries.
- Bring paper and pen to take notes or ask if you can tape-record the answers to refer to later at home.
- Ask a friend or family member to join you. He or she can help understand and may think of other questions to ask.
- Make a list of questions before you go and bring it with you.
During the Visit:
- Ask your most important questions first, in case you run out of time.
- Express yourself clearly and describe your problem or concern briefly.
- Tell the doctor how your problem or concern makes you feel and ask for what you want or need. A good example of how to end is “What can be done to help with this problem?”
- If necessary, ask the doctor to explain an answer in terms you understand and then repeat back in your own words what you think the doctor meant.
- Tell the doctor if you need more information.
Before Leaving:
- If medicine has been prescribed, be sure you know the best way to take it and about the possible side effects.
- If you ran out of time during this visit, ask if there is a better time of day or week to make appointments. Also ask the doctor to suggest a time when you could call and get your questions answers over the phone.
- Keep your own set of records about any follow-up care you have.
Handling Your Concerns:
Even though you may not see your medical team as frequently as before, you will still want to monitor your health and note changes:
- Keep a record of your symptoms and discuss with health care team
- Ask questions and do research when you do not understand something related to your health and symptoms
- Stay with your follow-up treatment plan for follow-up health care, including a schedule for screening tests and follow-up care
- Read about aftereffects common for your type of cancer
- Share important information with loved ones and health care providers so they also know what you are experiencing
Additional Resources:
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