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Facing Forward Series: Life After Cancer Treatment
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This publication covers post-treatment issues such as follow-up medical care, physical and emotional changes, changes in social relationships, and workplace issues.
Part of the Facing Forward Series for cancer survivors, family members, and medical professionals. The series is designed to educate and empower cancer survivors as they face the challenges associated with life after cancer treatment.
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| To order a hard copy, call the ACS National Cancer Information Center
at 1-800-ACS-2345, and ask for a copy of Facing Forward: Life After Cancer
Treatment, Publication No. 9522.00-HCP |
Printable version |
Getting Medical Care After
Cancer Treatment
Download a PDF version of Getting Medical Care After Cancer Treatment.
| 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.
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"You have to be in control--your body talks to you--and
you've got to use the doctor as a consultant. You've got to find out what
is wrong, because it is your life."
Mae, uterine cancer survivor, 54
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"I didn't know what to ask. So I asked my doctor what I needed
to know."
Jack, bladder cancer survivor, 70
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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.
This section offers some guidance on working with the people who provide care
after treatment. It describes the kinds of help you may need and provides tips
for getting what you want out of your medical visits. Reading this section can
also help you create a plan of action for your recovery and future health.
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. (See Services
to Think About for a description of these services.)
Keep in Mind
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| If you do not have health insurance, Medicare, or Medicaid, you may feel
that some of the information in this document 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.
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| 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 the resource
section of this document that may be able to help with health costs.
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Which Doctor Should I See Now?
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 as needed.
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
3 to 4 months during the first 2 to 3 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. (See Organization
Guidelines for Follow-up Care for contact information.)
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
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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.
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Developing a Wellness Plan
After cancer treatment, many survivors want to find ways to reduce the chances
of their cancer coming back. Some worry that the way they eat, the stress in their
lives, or their exposure to chemicals may put them at risk. Cancer survivors also
find that this is a time when they take a good look at how they take care of themselves
and their health. This is an important start to living a healthy life after cancer.
When you meet with your doctor about follow-up care, you should ask about developing
a wellness plan that includes ways you can take care of your physical, emotional,
social, and spiritual needs. You may not be used to talking with your doctor as
a partner in planning for your health, so it may be hard for you at first, but
it is very important that you do it. The more you do it, the easier it will become.
For tips on how to talk to your doctor, see Do You Have Trouble
Talking With Your Doctor?.
Research is just beginning to show what people can do to lower their risk of getting
certain cancers. But we don't yet know why cancer comes back in some people and
not others.
Making changes in the way you eat, exercise, and live your life may not prevent
your cancer from coming back. However, making these changes can help you feel
better and may also lower your chances of developing other health problems.
Changes you may want to think about:
- Quitting smoking. Research shows that smoking can increase
the chances of developing cancer at the same site or another site. For
help in quitting smoking, see Smoking Cessation Programs.
- Cutting down on how much alcohol you drink. Research shows
that drinking alcohol can increase your chances of developing certain
cancers.
- Eating well and exercising.
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Eating Well After Cancer Treatment
- Eat a variety of healthful foods, with an emphasis on foods from
plant sources.
- Eat five or more servings of vegetables and fruits each day.
- Choose whole grains--rather than processed (refined) grains and
sugars.
- Limit eating red meats, especially high fat or processed meats.
- Choose foods that help you maintain a healthy weight.
- Adopt a physically active lifestyle.
- Maintain a healthy weight throughout the rest of your life.
- Limit drinking alcohol, if you drink at all.
Source: American Cancer Society Recommendations for Nutrition and
Physical Activity for Cancer Prevention, 2002 |
Exercise After Cancer Treatment
Few studies have been done to find out whether physical activity affects
survival after cancer treatment. More research is needed to answer this
question, but studies have shown that moderate exercise (walking, biking,
swimming) for about 30 minutes every--or almost every--day can:
- Reduce anxiety and depression
- Improve mood
- Boost self-esteem
- Reduce symptoms of fatigue, nausea, pain, and diarrhea
During recovery, it is important to start an exercise program slowly and
increase activity over time, working with your doctor or a specialist (such
as a physical therapist) if needed. If you need to stay in bed during your
recovery, even small activities--like moving your arms or legs around--can
help you stay flexible, relieve muscle tension, and help you feel better.
Some survivors may need to take special care in exercising. Talk with your
doctor before you begin any exercise program. |
"The more you learn about your cancer, the more you realize
you have to speak up for yourself. And lots of times I would take information
to my doctor."
Ellen, stomach cancer survivor, 70
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Do You Have Trouble Talking With 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
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| 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.
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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. (See Talking
to Your Doctor About Pain for ways to describe your pain.)
- 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. (See Your
Body After Cancer Treatment.)
- 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. (See Complementary and Alternative Medicine
below.)
- Any emotional problems you may have, and any anxiety or depression you have
had in the past. (See Your
Mind and Your Feelings After Cancer Treatment.)
- 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.
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Tips: Getting the Most From Your Follow-up Visits
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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 your health.
- 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
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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)
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Services to Think About
People who have had cancer agree that no one should have to go it alone after
treatment. Your friends and family can help. Ask your doctor, nurse, social worker,
or local cancer organization how to find services in your area like the ones listed
below.
Professional Support Services You May Need
| Service |
How It Can Help You |
| Clergy-- Spiritual Counseling |
Some members of the clergy are trained to help you deal with cancer concerns
such as feeling alone, fear of death, searching for meaning, and doubts
about faith. |
| Couples Counseling |
You and your partner can work with trained specialists who can help you
talk about problems, learn about each other's needs, and find ways to cope.
Counseling may include issues related to sex and intimacy. |
| Family Support Programs |
Your whole family may be involved in the healing process. In these programs,
you and your family members participate in therapy sessions with trained
specialists who can help you talk about problems, learn about each other's
needs, and find answers. |
| Genetic Counseling |
Trained specialists advise on whether to have gene testing for cancer
and how to deal with the results. It can be helpful for you and for family
members who have concerns for their own health. (See Genetic
Counseling for ways to find genetic counselors.) |
| Home Care Services |
State and local governments offer many services useful after cancer treatment.
A nurse or physical therapist may be able to come to your home. You also
may be able to get help with housework or cooking. The phone book has contact
numbers under Social Services, Health Services, or Aging Services--both
nonprofit and for-profit. |
| Individual Counseling |
Trained mental health specialists help you deal with your feelings, such
as anger, sadness, and concern for your future. |
| Long-Term Follow-up Clinics |
All doctors can offer follow-up care, but there are a few clinics that
specialize in long-term follow-up after cancer. These clinics most often
see people who are no longer being treated by an oncologist and who are
considered disease-free. You may want to ask your doctor if there are follow-up
cancer clinics in your area. |
| Nutritionists/Dietitians |
They can help you with gaining or losing weight and with healthy eating.
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| Occupational Therapists |
They can help you regain, develop, and build skills that are important
for independent living. They can help you relearn how to do daily activities
such as bathing, dressing, or feeding yourself after cancer treatment. |
| Oncology Social Workers |
These professionals are trained to counsel you about ways to cope with
treatment issues and family problems related to your cancer. They can tell
you about resources and connect you with services in your area. |
| Pain Clinics (also called Pain and Palliative Care Services) |
These are centers with professionals from many different fields who are
specially trained in helping people get relief from pain. |
| Physical Therapists |
Physical therapists are trained in the way that the body parts interact
and work. They can teach you about proper exercises and body motions that
can help you gain strength and mobility after treatment. They can also advise
you about proper postures that help prevent injuries. |
| Smoking Cessation Services |
Research shows that the more support you have in quitting smoking, the
greater your chance for success. Many communities have "quit smoking" programs.
Ask your doctor, nurse, social worker, or local hospital about what is available,
or call 1-800-4-CANCER (1-800-422-6237). |
| Speech Therapists |
Speech therapists can evaluate and treat any speech, language, or swallowing
problems you may have after treatment. |
| Stress Management Programs |
These programs teach ways to help you relax and take more control over
stress. Hospitals, clinics, or local cancer organizations may offer such
programs and classes. |
| Support Groups for Survivors |
In-person and online groups enable survivors to interact with others in
similar situations. (See Joining
a Support Group.) |
| Vocational Rehabilitation Specialists |
If you have disabilities or other special needs after treatment, these
services can help you find suitable jobs. Such services include counseling,
education and skills training, and help in obtaining and using assistive
technology and tools. |
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