Getting Follow-up Medical Care
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.
Some common questions you may have are:
- Should I tell the doctor about symptoms that worry me?
- Which doctors should I see after treatment?
- How often should I see my doctor?
- What tests do I need?
- What can be done to relieve pain, fatigue, or other problems after treatment?
- How long will it take for me to recover and feel more like myself?
- Is there anything I can or should be doing to keep cancer from coming back?
- Will I have trouble with health insurance?
- Are there any support groups I can go to?
Coping with these issues can be a challenge. Yet many say that getting involved in decisions about their 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.
If you don't have health insurance, Medicare, or Medicaid, you may feel that some of the information in this booklet won't be helpful to you. You may have already struggled just to get treated and now see follow-up care as another battle. It can be hard to get care if you don't 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 with your doctor, social worker, or the business office at your local hospital or clinic. There are also organizations listed in the Resources section that may be able to help you with health care costs.
Once you have finished your cancer treatment, you should receive a follow-up cancer care plan. Follow-up care means seeing a doctor for regular medical checkups. Your follow-up care depends 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 3 to 4 months during the first 2 to 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 (recurred) or spread (metastasized) to another part of your body.
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. These scans take detailed pictures of areas inside the body at different angles.
- Endoscopy (en-DOSS-koh-pee). This test uses a thin, lighted tube to examine the inside of the body.
At your first follow-up visit, talk with your doctor about your follow-up care plan.
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.)
Medical Records and Follow-up Care
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.
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, such as:
- 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)
Be sure to give any new doctors that you see a copy of your treatment summary or medical records.
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. 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. 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.
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 find that this is a time when they take a good look at how they take care of themselves. This is an important start to living a healthy life.
When you meet with your doctor about follow-up care, you should also ask about developing a wellness plan that includes ways you can take care of your physical, emotional, social, and spiritual needs. If you find that it's hard to talk with your doctor about these issues, it may be helpful to know that the more you do it, the easier it becomes. And your doctor may suggest other members of the health care team for you to talk with, such as a social worker, clergy member, or nurse. For tips on talking with your doctor, see Talking With Your Doctor.
Changes You May Want to Think About Making
- Quit smoking. Research shows that smoking can increase the chances of getting cancer at the same site or another site.
- Cut down on how much alcohol you drink. Research shows that drinking alcohol increases your chances of getting certain types of cancers.
- Eat well. Healthy food choices and physical activity may help reduce the risk of cancer or recurrence. Talk with your doctor or a nutritionist to find out about any special dietary needs that you may have. The American Cancer Society and the American Institute for Cancer Research have developed similar diet and fitness guidelines that may help reduce the risk of cancer:
- Eat a plant-based diet and have at least 5-9 servings of fruit and vegetables daily. Try to include beans in your diet, and eat whole grains (such as cereals, breads, and pasta) several times daily.
- Choose foods low in fat and low in salt.
- Get to and stay at a healthy weight.
- Exercise and stay active. Several recent reports suggest that staying active after cancer can help lower the risk of recurrence and can lead to longer survival. Moderate exercise (walking, biking, swimming) for about 30 minutes every - or almost every - day can:
- Reduce anxiety and depression
- Improve mood and boost self-esteem
- Reduce fatigue, nausea, pain, and diarrhea
During cancer treatment, you had a lot of practice in getting the most out of every doctor's visit. These same skills now apply to you 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 having 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
Just because you have certain symptoms, it doesn't always mean the cancer has come back. Symptoms can be due to other problems that need to be addressed.
Considering 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. When it is used instead of treatments prescribed by a doctor, it is often called "alternative." Research has shown that more than half of all people with a history of cancer use one or more of these approaches.
Some common methods include imagery or relaxation (see Learning to Relax), acupressure and massage, homeopathy, vitamins or herbal products, special diets, psychotherapy, prayer, yoga, and acupuncture.
Even though you have finished your cancer treatment, if you are thinking about using any of these methods, discuss it with your doctor or nurse first. Some complementary and alternative therapies may interfere or be harmful when used with medicines normally prescribed by a doctor. For more information, see the Resources section to order the NCI brochure Thinking About Complementary & Alternative Medicine: A Guide for People With Cancer. You can also go to NCI's Office of Cancer Complementary and Alternative Medicine.
Asking About Your Family's Cancer Risk
You may worry that having cancer might increase your children's risk. It's important to know that most cancer is not passed down through families. Only about 5-10 percent of the most common cancers (such as breast, colon, and prostate) are inherited. In most of the families that have inherited cancers, researchers have found relatives who may have had:
- Cancer before they were 50 years old
- Cancer in two of the same body parts (like both kidneys or both breasts)
- Other risk factors for cancer (such as colon polyps or skin moles)
If you think that your cancer may be inherited, talking with a cancer genetic counselor can help answer your questions and those of your family. He or she can also help you and your doctor decide on the medical care that you and your family might need if a genetic link is found. Genetic testing can determine whether the cancers that occur in your family are due to genes or to other factors.
Getting the Most From Your Follow-up Visits
Here are some ideas that helped others with their follow-up care:
Before You Go:
- Bring paper, so you can take notes, or ask if you can tape-record the answers.
- 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.
At Your Visit:
- Ask to talk with the doctor or nurse in a private room with the door closed.
- Ask your most important questions first, in case the doctor runs out of time.
- 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?"
- 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.
- Tell your doctor if you need more information.
Before You Leave:
- Ask your doctor or pharmacist about the best way to take your medicine and about possible side effects.
- 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 if there are any survivor support groups in the area.
- Ask for booklets or other materials to read at home.
- Keep your own set of records about any follow-up care you have.
Questions About Your Follow-Up Plan
1. How often should I see my doctors?
|Doctor's Name||How Often|
2. What follow-up tests, if any, should be done (for example, CT scan, MRI, bone scan)? How often?
3. Are there symptoms that I should watch for?
4. If I develop any of these symptoms, whom should I call?
The following programs or organizations provide helpful follow-up care guidelines for some cancers. You can use them as you talk with your doctor - they aren't meant to contradict or take the place of your doctor's knowledge or judgment. Ask your oncologist for a treatment summary and a survivorship care plan. Both documents are recommended by the National Cancer Institute and other cancer organizations.
The American Society of Clinical Oncology has a series of follow-up care guidelines focused on breast and colorectal cancer. They can be viewed at www.cancer.net/patient/survivorship.
Children's Oncology Group Long-Term Follow-up Guidelines
The Children's Oncology Group offers long-term follow-up guidelines for survivors of childhood, adolescent, and young adult cancers at www.survivorshipguidelines.org.
The Journey Forward is a program centered on its Survivorship Care Plan. By using an online Care Plan Builder, the oncologist creates a full medical summary and recommendations for follow-up care to be shared with patients and their primary care providers. It was created by the National Coalition for Cancer Survivorship, UCLA Cancer Survivorship Center, Genentech, and WellPoint, Inc. Go to www.journeyforward.org
Life After Cancer Care
M.D. Anderson's Cancer Center Web site lists follow-up guidelines for 15 different disease sites at www.mdanderson.org/survivorship, and click on "Follow-up Medical Care."
Livestrong Care Plan
Developed by the Lance Armstrong Foundation and the University of Pennsylvania, the Livestrong Care Plan gives individuals a specific survivor care plan, based on the information they enter into the online program. Hosted at UP's Web site, view at www.livestrongcareplan.org.
The National Comprehensive Cancer Network Web site includes information about follow-up care for cancer, along with guidance on making formal survivorship care plans on their Life After Cancer Page.
For more information about follow-up care, see the NCI Fact Sheet, Follow-Up Care After Cancer Treatment.
Services to Think About
Talk with your doctor to help you locate services such as these:
- Couples Counseling
You and your partner 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.
- Faith or Spiritual Counseling
Some members of the clergy are trained to help you cope with cancer concerns, such as feeling alone, fear of death, searching for meaning, and doubts about faith.
- Family Support Programs Your whole family may be involved in the healing process. In these programs, you and your family members take part 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 can advise you on whether to have genetic testing for cancer and how to deal with the results. It can be helpful for you and for family members who have concerns about their own health.
- Home Care Services
State and local governments offer many services that you may find useful after cancer treatment. For example, a nurse or physical therapist may be able to come to your home. You may also be able to get help with housework or cooking. Check the phone book under the categories Social Services, Health Services, or Aging Services.
- Individual Counseling
Trained mental health specialists can 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 also 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. Ask your doctor if there are any follow-up cancer clinics in your area.
They can help you with gaining or losing weight and with healthy eating.
- Occupational Therapists
They can help you regain, develop, and build skills that are important for day-to-day 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.
- Ostomy Information and Support
The United Ostomy Association provides education, information, and support for people with intestinal/urinary diversions. Call 1-800-826-0826, or visit online at http://www.uoa.org.
- 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 to understand how different parts of your body work together. They can teach you about proper exercises and body motions that can help you gain strength and move better after treatment. They can also advise you about proper postures that help prevent injuries.
- Quitting Smoking (Smoking Cessation Services)
Research shows that the more support you have in quitting smoking, the greater your chance for success. Ask your doctor, nurse, social worker, or hospital about available programs, or call NCI's Smoking Quitline at 1-877-44-U-QUIT (1-877-448-7848).
- 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 these 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.)
- Survivor Wellness Programs
These types of programs are growing in number, and they are meant for people who have finished their cancer treatment and are interested in redefining their life beyond cancer.
- Vocational Rehabilitation Specialists
If you have disabilities or other special needs, these specialists can help you find suitable jobs. They offer services such as counseling, education and skills training, and help in obtaining and using assistive technology and tools.