It is natural for anyone who has finished cancer treatment to be concerned about what the future holds. Many people worry about the way they look and feel and about whether the cancer will come back. Others wonder what they can do to keep cancer from
coming back. Understanding what to expect after cancer treatment can help survivors and their families plan for follow-up care, make lifestyle changes, stay hopeful, and make important decisions.
All cancer survivors should have follow-up care. But you may have a lot of questions about getting the care you need now, such as:
- Whether to tell the doctor about symptoms that worry you
- Which doctors to see after treatment
- How often to see the doctor
- What specific tests you need
- What you can do to relieve pain and other problems after treatment
- How long it will take for you to recover from treatment and feel more like yourself
Dealing with these issues can be a challenge. Yet many say that getting involved in decisions about their future medical care and lifestyle was a good way for them to regain some of the control they felt they lost during cancer treatment. Research has
shown that people who feel more in control feel and function better than those who do not. Being an active partner with your doctor and getting help from other members of your health care team is the first step.
What is follow-up care?
The main purpose of follow-up care is to check if your cancer has returned (recurrence) or if it has spread to another part of your body (metastasis). Follow-up care can also help in:
- Finding other types of cancer
- Spotting side effects from treatment now or that can develop years after treatment
Follow-up care means seeing a doctor to get regular medical checkups. At these visits, your doctor will:
- Review your medical history
- Examine your body
Your doctor may run follow-up tests:
- Imaging procedures (ways of producing pictures of areas inside the body)
- Endoscopy (the use of a thin, lighted tube to examine organs inside the body)
- Blood tests
Follow-up care can also include home care, occupational or vocational therapy, pain management, physical therapy, and support groups.
Keep in Mind
If you do not have health insurance, Medicare, or Medicaid, you may feel that some of the information on these pages will not be helpful to you. You may have already struggled just to get treated and now see getting follow-up care as another battle. It
can be hard to get health care if you don't have good health insurance, but you must make sure you get the care you need - especially after treatment is over.
There may be resources in your community to help you get these services. Talk with your doctor, social worker, or the business office at your local hospital or clinic. There are also government and nonprofit organizations listed in this section that may
be able to help with health costs.
Which doctor should I see and how often?
You will need to decide which doctor will provide your cancer follow-up care and which one(s) will provide other medical care. For follow-up cancer care, this may be the same doctor who provided your cancer treatment. For other medical care, you can continue to see your family doctor or medical specialist
Depending on where you live, it may make more sense to get cancer follow-up care from your family doctor than to travel long distances to see an oncologist. No matter whom you choose as a doctor, try to find doctors you feel comfortable with.
At your first follow-up visit, ask your doctor to recommend a follow-up schedule. In general, people who have been treated for cancer 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 for follow-up appointments. Some medical organizations also have follow-up guidelines for certain cancers and update this information as researchers develop new approaches to follow-up care.
Follow-up care will be different for each person who has been treated for cancer, depending on the type of cancer and treatment he or she had and the person's general health. Researchers are still learning about the best approaches to follow-up care.
This is why it is important that your doctor help determine what follow-up care plan is right for you. Lastly, it is important to note that some insurance plans pay for follow-up care only with certain doctors and for a set number of visits. In planning
your follow-up care schedule, you may want to check your health insurance plan to see what restrictions, if any, apply to your follow-up care after cancer treatment.
Keep in Mind
Some people may suspect that their cancer has returned, or they notice other changes in their bodies. It is important for you to be aware of any changes in your health and report any problems to your doctor. Your doctor can find out whether these problems
are related to the cancer, the treatment you had, or another health problem.
Even if you learn that your cancer has returned, there is no reason to lose hope. Many people live good lives for many years with cancer that has returned.
Do you have trouble talking to your doctor?
It is not always easy to talk with your doctor. Sometimes, he or she uses terms you do not know. When this happens, it is important to stop and ask the doctor to explain what the words mean. You may be afraid of how you will sound to the doctor, but having
questions is perfectly normal.
Talking with your doctor is important. Both of you need information to manage your care. Telling the doctor about your health and asking questions helps both of you do your "jobs" well. Here are some points to cover.
At your first follow-up visit, ask your doctor/health care team about:
- The tests and follow-up care you need, and how often you will need them.
- The kinds of physical problems you may have from your cancer treatment and what you can do to prevent, reduce, or solve them.
- The potential long-term effects of treatment and the warning signs that you might have them.
- The warning signs that cancer may be coming back and what to do if you see them.
- Fears you may have about follow-up care.
Keep in Mind
Many survivors want to learn about symptoms that may indicate their cancer has come back, or recurred.
There are many types of symptoms that may show if cancer has returned, and it depends on each person, the kind of cancer she/he was treated for, and the kind of treatment he/she had.
It is for this reason that you should talk to your doctor about the signs or symptoms that you should watch for and what you should do about them.
At each visit, tell your doctor/health care team about:
- Symptoms that you think may be a sign of cancer's return
- Any pain that troubles you
- Any physical problems that get in the way of your daily life or that bother you, such as fatigue, trouble sleeping, loss of sex drive, or weight gain or loss
- Other health problems you have, such as heart disease, diabetes, or arthritis
- Any medicines, vitamins, or herbs you are taking and any other treatments you are using
- Any emotional problems you may have, and any anxiety or depression you have had in the past
- Any changes in your family medical history
- Things you want to know more about (such as new research or side effects)
Your health care team should be able to help you or refer you to someone who can help with any side effects or problems you may have. You have a right to get the help you need.
Complementary and alternative medicine
Complementary and alternative medicine includes many different healing approaches that people use to prevent illness, reduce stress, prevent or reduce side effects and symptoms, or control or cure disease. An approach is generally called complementary when it is used in addition to treatments prescribed by a doctor. An approach is often called alternative when it is used instead of treatments prescribed by a doctor. Research has shown that more than half of all people with cancer use one or more of these approaches.
Some common approaches include: visualization or relaxation; acupressure and massage; homeopathy; vitamins or herbal products; special diets; psychotherapy; spiritual practices; and acupuncture.
Even though you have finished your cancer treatment, if you are thinking about using these methods, discuss this decision with your doctor or nurse. Some complementary and alternative therapies may interfere or be harmful when used with treatments normally
prescribed by a doctor.
Getting the most from your follow-up visits
How do you get the most from your doctor visits? Here are some ideas that have helped others deal with their follow-up care:
- Ask someone to come with you to your doctor visit. 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.
- Bring paper or a tape recorder to make note of the answers the doctor gives you.
- Ask your most important questions first in case the doctor runs out of time.
- Don't be afraid to ask the doctor if you can schedule more time when you set up 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.
- Example: "I am tired most of the time each day. I've tried napping, but it does not help. My fatigue gets in the way of my daily life, which makes me upset and angry. I would like you to help me treat this problem or refer me to someone who can help."
- Tell your doctor how much you want to know.
- Tell him/her when you've heard enough or when you want more information.
- Ask for booklets or other materials to read at home.
- Make sure you understand the doctor's answers.
- Repeat in your own words what you think the doctor meant.
- Ask the doctor to explain what he or she said in terms you understand.
- If you find you cannot get answers to your questions, let your doctor know you're unhappy about it. If that does not get results, you may want to try to find a new doctor. This can be hard to do, but getting the information you need is important for
- Ask your pharmacist about how to take your medicines correctly or about possible side effects.
- Keep your own set of records about the follow-up care you get.
Tell any other doctor 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. Other doctors you see may not know about your cancer and its treatment unless you tell them.
Your medical records
Make sure to get a copy of your cancer treatment records or a summary. (You may be charged for these.) By keeping your records up to date, you'll have enough information to share with any new doctors you may see.
If you don't keep a copy, your records might be spread among many doctors' offices, and key facts about your cancer history could be lost.
Here are the key types of records you'll want to keep:
- The type of cancer you were treated for
- When you were diagnosed
- Details of all cancer treatment (including all surgeries; names and doses of all drugs; sites and total amounts of radiation therapy; and places and dates of treatment)
- Key lab reports, pathology reports, and x-ray reports
- Contact information for all health professionals involved in your treatment and follow-up care
- Any problems that occurred after treatment
- Information on supportive care you had (such as special medications, emotional support, and nutritional supplements)
Source: U. S. National Cancer Institute, Facing Forward Series: Life After Cancer