Getting Follow-up Medical Care
What Is Follow-up Care?
Which Doctor Should I See Now? How Often?
A Survivor's Wellness Plan
Talking With Your Doctor
Questions About Your Follow-up Plan
Guidelines for Follow-up 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?
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.
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Follow-up care means seeing a doctor for regular medical checkups. Your followup
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 schedule.
See Guidelines for Follow-up Care for a list of organizations and programs that give follow-up care
guidelines for survivors or Resources for a detailed list of cancer-related
organizations.
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)
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Be sure to give any new doctors that you see a copy of your treatment summary
or medical records.
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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.
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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 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.
For more tips on nutrition and healthy eating, go to www.aicr.org and
click on "Cancer Survivors," or go to www.cancer.org and click on
"Survivors."
- 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
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 stretching or moving your arms or legs can
help you stay flexible, relieve muscle tension, and help you feel better.
Some people may need to take special care in exercising. Talk with your
doctor before you begin any exercise program.
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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.
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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.
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:
- 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?"
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Tell your doctor if you need more information.
-
Ask for booklets or other materials to read at home.
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Ask the doctor to explain what he or she said in terms you understand.
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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.
Questions About Your Follow-Up Plan |
1. How often should I see
my doctors?
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?
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These organizations have 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.
Cancer: Keys to Survivorship
Hosted by the National Coalition of Cancer Survivorship and the Leukemia &
Lymphoma Society, this program teaches survivors, families, and caregivers the
necessary skills to help live with, through, and beyond cancer. A series of
seminars focuses on leading healthy lives, preparing for doctor visits, managing
side effects, and handling insurance and employment issues. Seminars can be
viewed online at www.canceradvocacy.org/programs/keys.aspx.
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.
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/departments/lacc, and click on "Followup
Guidelines by Disease."
People Living With Cancer
The American Society of Clinical Oncology has a series of follow-up care
guides focused on breast, colorectal, and lung cancer. They can be viewed at
www.plwc.org.
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.
- Nutritionists/Dietitians
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.
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