It is natural for anyone who has completed cancer treatment to be concerned about what the future holds. Many people are concerned about the way they look and feel, and about what they can do to keep the cancer from recurring (coming back). They want to know which doctor will follow them, how often to see the doctor for follow-up appointments, and what tests they should have. Understanding what to expect after cancer treatment can help patients and their loved ones plan for follow-up care, make lifestyle changes, and make important health-related decisions.

1. What is follow-up cancer care, and why is it important?

   Follow-up cancer care involves regular medical checkups that include a review of a patient’s medical history and a physical exam. Follow-up care may include imaging procedures (methods of producing pictures of areas inside the body), endoscopy (the use of a thin, lighted tube to examine the inside of the body), blood work, and other lab tests.

   Follow-up care is important because it helps to identify changes in health. The purpose of follow-up care is to check for recurrence (the return of cancer in the primary site) or metastasis (the spread of cancer to another part of the body). Follow-up care visits are also important to help in the prevention or early detection of other types of cancer, address ongoing problems due to cancer or its treatment, and check for physical and psychosocial effects that may develop months to years after treatment ends. All cancer survivors should have follow-up care.

2. What should patients tell their doctor during follow-up visits?

   During each visit, patients should tell their doctor about:

   • Any symptoms that they think may be a sign that their cancer has returned.
   • Any pain that bothers them.
   • Any physical problems that interfere with daily life or are bothersome, such as fatigue; difficulty with bladder, bowel, or sexual function; difficulty concentrating; memory changes; trouble sleeping; and weight gain or loss.
   • Any medicines, vitamins, or herbs they are taking and any other treatments they are using.
   • Any emotional problems they are experiencing, such as anxiety or depression.
   • Any changes in their family medical history, including any new cancers.

   It is important to note that cancer recurrences are not always detected during follow-up visits. Many times, recurrences are suspected or found by patients themselves between scheduled checkups. It is important for patients to be aware of changes in their health and report any problems to their doctor. The doctor can determine whether the problems are related to the cancer, the treatment the patient received, or an unrelated health issue.

3. How are follow-up care schedules planned?

   The frequency and nature of follow-up care is individualized based on the type of cancer, the type of treatment received, and the person’s overall health, including possible treatment-related problems. In general, people return to the doctor for follow-up appointments every 3 to 4 months during the first 2 to 3 years after treatment, and once or twice a year after that.

   At these follow-up appointments, the doctor may recommend tests to check for recurrence or to screen for other types of cancer. In many cases, it is not clear that special follow-up tests improve survival or quality of life. This is why it is important for the doctor to help determine what follow-up care plan is appropriate. The doctor may not need to perform any tests if the person appears to be in good physical condition and does not have any symptoms. It is important for the patient to talk with the doctor about any questions or concerns related to the follow-up care plan.

   When planning a follow-up care schedule, patients should consider who will provide the follow-up care and who will provide other medical care. They should select a doctor with whom they feel comfortable. This may be the same doctor who provided the person’s cancer treatment. For other medical care, people should continue to see a family doctor or medical specialist as needed.

   Some people might not have a choice in who provides their follow-up care, because some insurance plans pay for follow-up care only with certain doctors and for a set number of visits. In planning follow-up care, patients may want to check their health insurance plan to see what restrictions, if any, apply to them.

4. Are there doctors or clinics that specialize in follow-up care?

   There are a few clinics that specialize in long-term follow-up cancer care for adult and pediatric cancer survivors. A listing of long-term follow-up cancer care clinics is available on the National Coalition for Cancer Survivorship (NCCS) Web page at http://www.canceradvocacy.org/resources/guide/?cancerrelated_information=long-term-survival-clinics&essential_care=&cancer_type= on the Internet. In addition, the Association of Cancer Online Resources (ACOR), a cancer information system that offers access to electronic mailing lists and Web sites, provides a list of long-term follow-up care clinics for children and adolescents treated for cancer. This list is located on ACOR’s Pediatric Oncology Resource Center Web page at
   http://www.acor.org/ped-onc/treatment/surclinics.html on the Internet.

5. What should patients talk to their doctor about once cancer treatment ends?

   Every cancer survivor should request a comprehensive care summary and follow-up plan from their doctor once they complete their treatment. Patients should ask their doctor the following questions once cancer treatment ends. The answers can help inform the patient about their care and what to expect next. (See Question 7 for more information about plans for follow-up care.)

   • What treatments and drugs have I been given?
   • How often should I have a routine visit?
   • Which doctor should I see for my follow-up cancer care?
   • What are the chances that my cancer will come back or that I will get another type of cancer?
   • What follow-up tests, if any, should I have?
   • How often will I need these tests?
   • What symptoms should I watch for?
   • If I develop any of these symptoms, whom should I call?
   • What are the common long-term and late effects of the treatment I received?
   • What should I do to maintain my health and well-being?
   • Will I have trouble getting health insurance or keeping a job because of my cancer?
   • Are there support groups I can turn to?

   Many patients find it helpful to write these questions down and take notes or tape record their discussions with the doctor to refer to at a later time.

6. How can patients deal with their emotions once cancer treatment is completed?

   It is common to experience stress, depression, and anxiety during and after cancer treatment. Many people find it helpful to talk about their feelings with family and friends, health professionals, other patients, members of the clergy, and counselors or therapists. Being part of a support group can provide another outlet for people to share their feelings. Relaxation techniques, such as guided imagery and slow rhythmic breathing, can also help to ease negative thoughts or feelings. Reaching out to others by participating in volunteer activities can help people to feel stronger and more in control. However, people who continue to experience emotional distress should ask their doctor to refer them to someone who can help determine what may be causing or contributing to their distress and how to deal with it.

7. What kinds of medical information should patients keep?

   It is important for people to keep a copy of their cancer treatment records. Ideally, this should include a comprehensive care summary and follow-up plan from your doctor. Patients may not always see the same doctor for their follow-up care, so having this information available to share with another doctor can be helpful. In particular, it is important to keep the following information:

   • Results of any diagnostic test.
   • Specific type of cancer (diagnosis).
   • Date(s) of cancer diagnosis.
   • Details of all cancer treatment, including the places and dates where treatment was received (for example, type and dates of all surgeries; names and doses of all drugs; sites and total amounts of radiation therapy).
   • Contact information for all doctors and other health professionals involved in treatment and follow-up care.
   • Side effects and complications that occurred during and after treatment.
   • Supportive care received (for example, pain or nausea medication, emotional support, and nutritional supplements).
   • Identifying number and title of clinical trial (research study), if the patient participated in a clinical trial.
   
   
8. What other services may be useful during follow-up care?

   Other services that may be helpful not just during cancer treatment but also as part of follow-up care include support groups, couples counseling, genetic counseling, fertility/sexual counseling, home care services, nutrition counseling, physical therapy, pain management, and occupational or vocational therapy. Some patients may also need financial aid or assistance with transportation to and from appointments. Information about these and other services is available from local and national cancer organizations, hospitals, local churches or synagogues, the YMCA or YWCA, and local or county government agencies. Patients can also ask their doctor, nurse, or social worker how to find these services.

   To get the most from these services, it is important to think about what questions to ask before calling. Many people find it helpful to write down their questions and to take notes during the conversation. It is also important to find out about eligibility requirements for these services. Organizations providing many of these services are listed in the “Resources” section of the National Cancer Institute (NCI) publication Facing Forward: Life After Cancer Treatment, which is available at http://www.cancer.gov/cancertopics/life-after-treatment/page9#h2 on the Internet.

9. What research is being done in regards to follow-up cancer care?

   NCI, a component of the National Institutes of Health, funds the Childhood Cancer Survivor Study (CCSS). This study, which is coordinated by St. Jude Children’s Research Hospital, has over 25 sites across the country at medical institutions with doctors specializing in long-term care for children and young adults. Information about the study, including a link to a list of participating institutions, is available at http://www.stjude.org/ccss on the Internet. This study was created to gain new knowledge and educate cancer survivors about the long-term effects of cancer and cancer therapy, and to provide information about follow-up care.

   Several additional studies being supported by NCI, including the Experience of Care and Health Outcomes of Survivors of Non-Hodgkin’s Lymphoma (ECHOS-NHL) study and the Assessment of Patients’ Experience of Cancer Care (APECC) study, will provide data on how and where survivors of adult cancer receive their follow-up care and the special information and service needs they may have. Information about the ECHOS-NHL study is available at http://outcomes.cancer.gov/surveys/echos-nhl/ and information about the APECC study can be found at http://outcomes.cancer.gov/surveys/apecc/ on the Internet.

   In addition, a survey of physicians’ attitudes and practices regarding appropriate follow-up care for survivors is under way. This work is being supported by NCI in collaboration with the American Cancer Society. The results will be available in late 2010. More information about this study can be found at http://healthservices.cancer.gov/surveys/sparccs/ on the Internet.

10. Does the NCI have guidelines for follow-up care?

    No, NCI does not have such guidelines. However, some organizations do have follow-up guidelines for some types of cancer.

    The American Society of Clinical Oncology (ASCO), a nonprofit organization that represents more than 27,000 cancer professionals worldwide, has published information summaries for patients based on the ASCO Clinical Practice Guidelines for health care providers. The patient summaries provide information on a variety of cancer topics, including follow-up care for breast and colorectal cancer. These guidelines, called What to Know: ASCO’s Guidelines, are available on ASCO’s Cancer.Net Web site at http://www.cancer.net/patient/ASCO+Resources/What+to+Know%3A+ASCO%27s+Guidelines on the Internet.

    The National Comprehensive Cancer Network (NCCN), which is also a nonprofit organization, is an alliance of cancer centers. The NCCN has a consumer Web site called NCCN.com. This Web site includes information about follow-up care for cancer, along with guidance on making formal survivorship plans. The Life Beyond Cancer: Follow-Up Care After Cancer Web page is available at http://www.nccn.com/Life-Beyond-Cancer/WellnessArticles.aspx?id=486 on the Internet.

    The Children’s Oncology Group (COG) is an NCI-supported clinical trials cooperative group devoted exclusively to childhood and adolescent cancer research. Clinical trials are conducted in the United States, Mexico, Canada, Europe, Australia, and New Zealand. COG developed a resource for health care providers called Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers. These guidelines are available at http://www.survivorshipguidelines.org/ on the Internet.

Related NCI materials and Web pages:

• National Cancer Institute Fact Sheet 7.47, How To Find a Doctor or Treatment Facility If You Have Cancer ¹
  (http://www.cancer.gov/cancertopics/factsheet/Therapy/doctor-facility)
• National Cancer Institute Fact Sheet 8.3, Financial Assistance and Other Resources for People With Cancer ²
  (http://www.cancer.gov/cancertopics/factsheet/Support/financial-resources)
• Facing Forward: Life After Cancer Treatment ³
  (http://www.cancer.gov/cancertopics/life-after-treatment)
• Facing Forward: Ways You Can Make a Difference in Cancer ⁴
  (http://www.cancer.gov/cancertopics/make-a-difference)
• National Cancer Institute-Designated Cancer Centers Database ⁵
  (http://www.cancer.gov/cancertopics/factsheet/NCI/cancer-centers)
• National Cancer Institute National Organizations That Offer Services to People With Cancer and Their Families Database ⁶
  (http://www.cancer.gov/cancertopics/factsheet/Rehabilitation/organizations)

How can we help?

We offer comprehensive research-based information for patients and their families, health professionals, cancer researchers, advocates, and the public.

• Call NCI’s Cancer Information Service at 1–800–4–CANCER (1–800–422–6237)
• Visit us at http://www.cancer.gov or http://www.cancer.gov/espanol
• Chat using LiveHelp, NCI’s instant messaging service, at http://www.cancer.gov/livehelp
• E-mail us at cancergovstaff@mail.nih.gov
• Order publications at http://www.cancer.gov/publications or by calling 1–800–4–CANCER
• Get help with quitting smoking at 1–877–44U–QUIT (1–877–448–7848)

Glossary Terms

Feelings of fear, dread, and uneasiness that may occur as a reaction to stress. A person with anxiety may sweat, feel restless and tense, and have a rapid heart beat. Extreme anxiety that happens often over time may be a sign of an anxiety disorder.

In healthcare, a process used to learn about a patient’s condition. This may include a complete medical history, medical tests, a physical exam, a test of learning skills, tests to find out if the patient is able to carry out the tasks of daily living, a mental health evaluation, and a review of social support and community resources available to the patient.

The organ that stores urine.

A tissue with red blood cells, white blood cells, platelets, and other substances suspended in fluid called plasma. Blood takes oxygen and nutrients to the tissues, and carries away wastes.

The long, tube-shaped organ in the abdomen that completes the process of digestion. The bowel has two parts, the small bowel and the large bowel. Also called intestine.

Glandular organ located on the chest. The breast is made up of connective tissue, fat, and breast tissue that contains the glands that can make milk. Also called mammary gland.

A term for diseases in which abnormal cells divide without control and can invade nearby tissues. Cancer cells can also spread to other parts of the body through the blood and lymph systems. There are several main types of cancer. Carcinoma is a cancer that begins in the skin or in tissues that line or cover internal organs. Sarcoma is a cancer that begins in bone, cartilage, fat, muscle, blood vessels, or other connective or supportive tissue. Leukemia is a cancer that starts in blood-forming tissue such as the bone marrow, and causes large numbers of abnormal blood cells to be produced and enter the blood. Lymphoma and multiple myeloma are cancers that begin in the cells of the immune system. Central nervous system cancers are cancers that begin in the tissues of the brain and spinal cord. Also called malignancy.

Ordained individuals who perform spiritual and/or religious functions.

Having to do with the examination and treatment of patients.

Guidelines developed to help health care professionals and patients make decisions about screening, prevention, or treatment of a specific health condition.

A type of research study that tests how well new medical approaches work in people. These studies test new methods of screening, prevention, diagnosis, or treatment of a disease. Also called clinical study.

Having to do with the colon or the rectum.

In medicine, a medical problem that occurs during a disease, or after a procedure or treatment. The complication may be caused by the disease, procedure, or treatment or may be unrelated to them.

The process by which a professional counselor helps a person cope with mental or emotional distress, and understand and solve personal problems.

A mental condition marked by ongoing feelings of sadness, despair, loss of energy, and difficulty dealing with normal daily life. Other symptoms of depression include feelings of worthlessness and hopelessness, loss of pleasure in activities, changes in eating or sleeping habits, and thoughts of death or suicide. Depression can affect anyone, and can be successfully treated. Depression affects 15-25% of cancer patients.

The process of identifying a disease, such as cancer, from its signs and symptoms.

Extreme mental or physical pain or suffering.

The amount of medicine taken, or radiation given, at one time.

Any substance, other than food, that is used to prevent, diagnose, treat or relieve symptoms of a disease or abnormal condition. Also refers to a substance that alters mood or body function, or that can be habit-forming or addictive, especially a narcotic.

A procedure that uses an endoscope to examine the inside of the body. An endoscope is a thin, tube-like instrument with a light and a lens for viewing. It may also have a tool to remove tissue to be checked under a microscope for signs of disease.

A record of the relationships among family members along with their medical histories. This includes current and past illnesses. A family medical history may show a pattern of certain diseases in a family. Also called family history.

A condition marked by extreme tiredness and inability to function due lack of energy. Fatigue may be acute or chronic.

The ability to produce children.

Monitoring a person's health over time after treatment. This includes keeping track of the health of people who participate in a clinical study or clinical trial for a period of time, both during the study and after the study ends.

A communication process between a specially trained health professional and a person concerned about the genetic risk of disease. The person's family and personal medical history may be discussed, and counseling may lead to genetic testing.

Having to do with plants.

A technique in which the person focuses on positive images in his or her mind.

A method of producing pictures of areas inside the body.

Side effects of cancer treatment that appear months or years after treatment has ended. Late effects include physical and mental problems and second cancers.

Cancer that begins in cells of the immune system. There are two basic categories of lymphomas. One kind is Hodgkin lymphoma, which is marked by the presence of a type of cell called the Reed-Sternberg cell. The other category is non-Hodgkin lymphomas, which includes a large, diverse group of cancers of immune system cells. Non-Hodgkin lymphomas can be further divided into cancers that have an indolent (slow-growing) course and those that have an aggressive (fast-growing) course. These subtypes behave and respond to treatment differently. Both Hodgkin and non-Hodgkin lymphomas can occur in children and adults, and prognosis and treatment depend on the stage and the type of cancer.

A legal drug that is used to prevent, treat, or relieve symptoms of a disease or abnormal condition.

Refers to the practices and procedures used for the prevention, treatment, or relief of symptoms of a diseases or abnormal conditions. This term may also refer to a legal drug used for the same purpose.

The spread of cancer from one part of the body to another. A tumor formed by cells that have spread is called a “metastatic tumor” or a “metastasis.” The metastatic tumor contains cells that are like those in the original (primary) tumor. The plural form of metastasis is metastases (meh-TAS-tuh-SEEZ).

The National Cancer Institute, part of the National Institutes of Health of the United States Department of Health and Human Services, is the Federal Government's principal agency for cancer research. The National Cancer Institute conducts, coordinates, and funds cancer research, training, health information dissemination, and other programs with respect to the cause, diagnosis, prevention, and treatment of cancer. Access the National Cancer Institute Web site at http://www.cancer.gov. Also called NCI.

A federal agency in the U.S. that conducts biomedical research in its own laboratories; supports the research of non-Federal scientists in universities, medical schools, hospitals, and research institutions throughout the country and abroad; helps in the training of research investigators; and fosters communication of medical information. Access the National Institutes of Health Web site at http://www.nih.gov. Also called NIH.

A feeling of sickness or discomfort in the stomach that may come with an urge to vomit. Nausea is a side effect of some types of cancer therapy.

Any of a large group of cancers of lymphocytes (white blood cells). NHLs can occur at any age and are often marked by lymph nodes that are larger than normal, fever, and weight loss. There are many different types of NHL. These types can be divided into aggressive (fast-growing) and indolent (slow-growing) types, and they can be formed from either B-cells or T-cells. B-cell NHLs include Burkitt lymphoma, chronic lymphocytic leukemia/small lymphocytic lymphoma (CLL/SLL), diffuse large B-cell lymphoma, follicular lymphoma, immunoblastic large cell lymphoma, precursor B-lymphoblastic lymphoma, and mantle cell lymphoma. T-cell NHLs include mycosis fungoides, anaplastic large cell lymphoma, and precursor T-lymphoblastic lymphoma. Lymphomas that occur after bone marrow or stem cell transplantation are usually B-cell NHLs. Prognosis and treatment depend on the stage and type of disease. Also called non-Hodgkin lymphoma.

A health professional trained to care for people who are ill or disabled.

The taking in and use of food and other nourishing material by the body. Nutrition is a 3-part process. First, food or drink is consumed. Second, the body breaks down the food or drink into nutrients. Third, the nutrients travel through the bloodstream to different parts of the body where they are used as "fuel" and for many other purposes. To give the body proper nutrition, a person has to eat and drink enough of the foods that contain key nutrients.

A product that is added to the diet. A nutritional supplement is taken by mouth, and usually contains one or more dietary ingredient (such as vitamin, mineral, herb, amino acid, and enzyme). Also called dietary supplement.

The study of cancer.

Having to do with children.

An exam of the body to check for general signs of disease.

The use of exercises and physical activities to help condition muscles and restore strength and movement. For example, physical therapy can be used to restore arm and shoulder movement and build back strength after breast cancer surgery.

Medical doctor.

In medicine, action taken to decrease the chance of getting a disease or condition. For example, cancer prevention includes avoiding risk factors (such as smoking, obesity, lack of exercise, and radiation exposure) and increasing protective factors (such as getting regular physical activity, staying at a healthy weight, and having a healthy diet).

The original tumor.

The use of high-energy radiation from x-rays, gamma rays, neutrons, protons, and other sources to kill cancer cells and shrink tumors. Radiation may come from a machine outside the body (external-beam radiation therapy), or it may come from radioactive material placed in the body near cancer cells (internal radiation therapy). Systemic radiation therapy uses a radioactive substance, such as a radiolabeled monoclonal antibody, that travels in the blood to tissues throughout the body. Also called irradiation and radiotherapy.

Cancer that has recurred (come back), usually after a period of time during which the cancer could not be detected. The cancer may come back to the same place as the original (primary) tumor or to another place in the body. Also called recurrent cancer.

A problem that occurs when treatment affects healthy tissues or organs. Some common side effects of cancer treatment are fatigue, pain, nausea, vomiting, decreased blood cell counts, hair loss, and mouth sores.

A professional trained to talk with people and their families about emotional or physical needs, and to find them support services.

In medicine, a doctor or other health care professional who is trained and licensed in a special area of practice. Examples of medical specialists include oncologists (cancer specialists) and hematologists (blood specialists).

The response of the body to physical, mental, or emotional pressure. This may make a person feel frustrated, angry, or anxious, and may cause unhealthy chemical changes in the body. Untreated, long-term stress may lead to many types of mental and physical health problems.

A group of people with similar disease who meet to discuss how better to cope with their disease and treatment.

Care given to improve the quality of life of patients who have a serious or life-threatening disease. The goal of supportive care is to prevent or treat as early as possible the symptoms of a disease, side effects caused by treatment of a disease, and psychological, social, and spiritual problems related to a disease or its treatment. Also called comfort care, palliative care, and symptom management.

One who remains alive and continues to function during and after overcoming a serious hardship or life-threatening disease. In cancer, a person is considered to be a survivor from the time of diagnosis until the end of life.

In cancer, survivorship covers the physical, psychosocial, and economic issues of cancer, from diagnosis until the end of life. It focuses on the health and life of a person with cancer beyond the diagnosis and treatment phases. Survivorship includes issues related to the ability to get health care and follow-up treatment, late effects of treatment, second cancers, and quality of life. Family members, friends, and caregivers are also part of the survivorship experience.

An indication that a person has a condition or disease. Some examples of symptoms are headache, fever, fatigue, nausea, vomiting, and pain.

Treatment.

A nutrient that the body needs in small amounts to function and stay healthy. Sources of vitamins are plant and animal food products and dietary supplements. Some vitamins are made in the human body from food products. Vitamins are either fat-soluble (can dissolve in fats and oils) or water-soluble (can dissolve in water). Excess fat-soluble vitamins are stored in the body’s fatty tissue, but excess water-soluble vitamins are removed in the urine. Examples are vitamin A, vitamin C, and vitamin E.