Who Are Cancer Survivors?

The term "cancer survivors" refers to individuals who have been diagnosed with cancer and the people in their lives who are affected by the diagnosis, including family members, friends, and caregivers.

The Burden of Cancer Survivorship

Due to advances in the early detection and treatment of cancer, people are living many years after a diagnosis. In January 2007, about 11.7 million people with a previous diagnosis of cancer were living in the United States. Approximately 66% of people diagnosed with cancer are expected to live at least five years after diagnosis. However, disparities in health care impact survival. Low-income men and women who have inadequate or no health insurance coverage are more likely to be diagnosed with cancer at later stages, when survival times are shorter.

Cancer survivors may face physical, emotional, social, spiritual, and financial challenges as a result of their cancer diagnosis and treatment. Public health professionals strive to address survivorship and quality of life issues such as the coordination of care, patient-provider communication, health promotion, support services, and fertility preservation. In light of these concerns, public health initiatives aimed at understanding and preventing secondary disease, recurrence, and the long-term effects of treatment are essential. Promoting Health After a Cancer Diagnosis Cancer survivors are at greater risk for recurrence and for developing second cancers due to the effects of treatment, unhealthy lifestyle behaviors, underlying genetics, or risk factors that contributed to the first cancer. The following factors can help maintain health and improve survival and quality of life after a cancer diagnosis:

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• Quitting Tobacco Use
  • Smoking is a preventable risk factor for cancer recurrence and additional cancers.
• Being Active and Maintaining a Healthy Weight
  • Obesity may be related to poorer survival after breast, prostate and colorectal cancer.
  • Regular physical activity may improve quality of life after a cancer diagnosis.
• Discussing Follow-up Care with a Health Care Provider
  Important topics to discuss:
  • A follow-up plan of care that includes a schedule of recommended follow-up visits, screenings, and medical tests and specifies which providers will be responsible for care.
  • Possible delayed effects of treatment.
  • The importance of seeking timely care in response to certain signs or symptoms.
  • Emotional wellness after cancer and identifying available resources for additional support, if necessary.
  • Lifestyle changes recommended for improving health and well-being after cancer.
  • Developing an effective support system that meets survivors' medical and emotional needs.

The Cancer Survivor's Guide: Foods That Help You Fight Back

The Cancer Survivor's Guide: Foods That Help You Fight Back (Kindle)

Follow-Up Cancer Care

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). 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 at ACOR’s Pediatric Oncology Resource Center.

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.

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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.

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. 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. See information about the ECHOS-NHL study and information about the APECC study.

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.

10. Does 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. Also, some organizations help patients and physicians develop individualized care plans based on a patient’s treatment history.

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 are called What to Know: ASCO’s Guidelines.

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.

The Journey Forward is a program that was created by the National Coalition for Cancer Survivorship, the University of California, Los Angeles Cancer Survivorship Center, Genentech, and WellPoint, Inc. The program is designed for doctors and their patients who have recently completed cancer treatment. It promotes the use of a Survivorship Care Plan, which oncologists create using an online Survivorship Care Plan Builder. The Survivorship Care Plan is a full medical summary and recommendations for follow-up care to be shared with patients and their primary care providers. The Journey Forward also provides an electronic tool, the Medical History Builder Form, to help patients put together a summary of their medical history.

The Livestrong Care Plan was developed by the Lance Armstrong Foundation and the University of Pennsylvania to provide cancer survivors with information regarding the health risks they face as a result of cancer therapies. An individual answers a series of questions in an online questionnaire, and the Livestrong Care Plan uses this information to provide a specific survivor care plan. A version in Spanish is also provided.

The National Comprehensive Cancer Network (NCCN) is a nonprofit organization that 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.

Help for the Uninsured

Cancer creates heavy economic burdens on both patients and their families. For people who don't have health insurance or who need financial assistance to cover health care costs, resources are available, including government-sponsored programs and services supported by non-profit organizations.

The best place to start a search for cancer services near where you live is with your state or local health department. Support groups are often listed in local newspapers.

Cancer patients and their families should discuss any concerns they may have about health care costs with their doctor, a medical social worker, or the business office of their hospital or clinic.

The National Cancer Institute has a list of organizations and agencies that may be able to help with health care costs at Financial Assistance and Other Resources for People with Cancer.

Some pharmaceutical companies offer patient assistance programs to help pay for medications. To learn about whether a specific drug might be available at reduced cost through such a program, talk with your doctor or a medical social worker, or visit the drug manufacturer's Web site and look for Patient Assistance Programs.

Related Links

• Call your local program to find out if you qualify for free or low-cost mammograms and Pap tests through the National Breast and Cervical Cancer Early Detection Program
• The Colorectal Cancer Control Program offers free or low-cost colorectal (colon) cancer screening tests
• Patient Advocate Foundation
• American Cancer Society Support Programs and Services

Cancer, the Flu, and You

What Cancer Patients, Survivors, and Caregivers Should Know About the Flu:

Living with cancer increases your risk for complications from influenza ("flu"). If you have cancer now or have had cancer in the past, you are at higher risk for complications from the seasonal flu or influenza, including hospitalization and death.

To help prepare you for the flu this season, CDC answers some of your most important questions about special considerations for cancer patients, survivors, and caregivers for the flu.

What should adult cancer patients and survivors know about the 2010–2011 flu season?

"Flu" refers to illnesses caused by a number of different influenza viruses. Flu can cause a range of symptoms and effects, from mild to deadly. Some people, including cancer patients and survivors, are more likely to get flu complications that could result in hospitalization and death. For the latest information, visit 2010–2011 Flu Season.

I have had cancer in the past, but I do not have cancer now. Does this information apply to me?

Yes. If you have had cancer in the past, you are at higher risk for complications from flu, even if you are free from cancer now.

Are cancer patients and survivors more likely to get the flu than others?

We do not know if cancer patients and survivors are at greater risk for infection with flu. However, we do know that cancer patients and survivors are at higher risk for complications from flu, including hospitalization and death.

Should cancer patients and survivors get a flu shot?

Yes. People with cancer or a history of cancer should receive the seasonal flu shot, not the nasal spray vaccine. People who live with or care for cancer patients and survivors also should be vaccinated against seasonal flu. Additionally, CDC recommends that everyone aged six months and older get a 2010–2011 flu vaccine for the upcoming season.

This year, there are no separate vaccines for H1N1 and seasonal flu. Every year a different flu vaccine is developed to match the constantly changing flu strains that circle the globe. This year's vaccine is an all-in-one flu shot that protects against the swine flu strain (H1N1) plus two other kinds of influenza: an H3N2 virus and an influenza B virus. Getting a flu shot as soon as it becomes available each year is always a good idea, and the protection you get from vaccination will last throughout the flu season.

What other vaccines should cancer patients and survivors be aware of?

Many people in at-risk groups also should get a pneumococcal pneumonia shot. People with cancer or other diseases that compromise your immune system should ask their health care providers if two pneumococcal pneumonia shots are needed.

Fluzone High-Dose is a new flu vaccine manufactured by Sanofi Pasteur Inc. specifically for people who are 65 years of age and older. Immune defenses become weaker with age, which places older people at greater risk of severe illness from flu. Also, aging decreases the body's ability to have a good immune response after getting a flu shot. A higher dose of antigen in the vaccine is supposed to give older people a better immune response and better protection against flu. What can cancer patients and survivors do to help reduce the spread of the flu?

1. Take time to get a flu vaccine.

2. Develop good health habits to stop the spread of germs.

• Cover your nose and mouth with a tissue when you cough or sneeze. Throw the tissue in the trash after you use it.
• Wash your hands often with soap and water. If soap and water are not available, use an alcohol-based hand sanitizer.
• Avoid touching your eyes, nose, or mouth. Germs spread this way.
• Try to stay at least six feet away from people who appear ill.
• If you are sick with flu-like illness, stay home for at least 24 hours after your fever is gone except to get medical care or for other necessities. Your fever should be gone without the use of a fever-reducing medicine. Keep away from others as much as possible to keep from making them sick.
• Follow public health advice regarding school closures, avoiding crowds, and other social distancing measures.
• Be prepared in case you get sick with a supply of over-the-counter medicines, alcohol-based hand sanitizer, and tissues.

3. Take flu antiviral drugs if your doctor prescribes them.

Other important steps to take include—

• Stay informed by visiting CDC's Flu site often.
• Develop a plan in advance with your doctor about what to do if you get sick (when you should call your doctor, whether you will need antiviral medication, and how to get a prescription for antiviral medication quickly if needed).
• Make sure your vaccinations are up-to-date.
• Keep a written record of the type of cancer you have, treatment you have received and when you received it, the name and contact information for your doctor, and a list of medicines you are taking.

What are the symptoms of the flu?

Symptoms of the flu include fever, cough, sore throat, runny or stuffy nose, body aches, headache, chills, and fatigue. Some people may have vomiting and diarrhea. People may be infected with the flu, including 2009 H1N1, and have respiratory symptoms without a fever. For more information, visit Flu Symptoms and Severity.

What should cancer patients and survivors do if they think they may have the flu?

If you have received cancer treatment such as chemotherapy and/or radiation therapy within the last month, or have a blood or lymphatic form of cancer, call your doctor immediately if you get flu symptoms.

All cancer patients and survivors should follow the steps below.

1. Contact your health care provider and follow his or her instructions.

2. Stay home and away from others as much as possible to keep from making them sick. This means you should avoid public activities, including work, school, travel, shopping, social events, and public gatherings. You should stay home for at least 24 hours after your fever is gone (without the use of fever-reducing medicine), except to get medical care or other necessities.

3. If you need to go to the doctor's office, emergency room, or any other health care facility, cover your mouth and nose with a facemask, if available and tolerable, or cover your mouth and nose with a tissue when coughing or sneezing. Let the facility's staff know you are there because you think you may have the flu.

For more information, visit Seasonal Flu: What To Do If You Get Sick.

I live with or provide care for a cancer patient or survivor. What do I need to know about the flu?

People with flu can spread it to others up to about six feet away. Most experts think that flu viruses are spread mainly by droplets made when people with flu cough, sneeze, or talk. These droplets can land in the mouths or noses of people who are nearby or be inhaled into their lungs. Less often, a person might also get flu by touching a surface or object that has flu virus on it and then touching their own mouth or nose.

Most healthy adults may be able to infect others beginning the day before symptoms develop and five to seven days after becoming sick. That means that you may be able to pass on the flu to someone else before you know you are sick, as well as while you are sick. For more information, learn How Flu Spreads.

Since cancer patients and survivors are at higher risk for complications from the flu, including hospitalization and death, please take the following precautions to help avoid spreading the flu.

• Get a flu shot. CDC recommends a yearly flu vaccine as the first and most important step in protecting against flu viruses.
• Help stop the spread of germs by covering your nose and mouth with a tissue when you cough or sneeze, washing your hands or using hand sanitizer often, avoiding close contact with sick people, and limiting contact with others as much as possible if you get sick.

If you are caring for a cancer patient or survivor who has the flu, please visit The Flu: Caring for Someone Sick at Home for detailed information about how to care for the sick person while avoiding getting sick yourself.

If you have a child with cancer, read Flu: A Guide for Parents of Children or Adolescents with Chronic Health Conditions Adobe PDF file [PDF-164KB].

Is there treatment for the flu?

Yes. CDC recommends oseltamivir or zanamivir antiviral drugs to treat and prevent infection. Antiviral drugs are prescription medicines (pills, liquid, or an inhaled powder) that stop flu viruses from reproducing in your body. If you get sick, antiviral drugs can make your illness milder and make you feel better faster. They may also prevent serious flu complications.

It's very important that antiviral drugs be used early to treat flu in people who are very sick with flu (for example, people who are in the hospital) and people who are sick with flu and have a greater chance of getting serious flu-related complications, including cancer patients and survivors.

When should cancer survivors be prescribed antiviral drugs to prevent the flu?

If you have received cancer treatment such as chemotherapy and/or radiation therapy within the last month, or have a blood or lymphatic form of cancer, call your doctor immediately if you have been within six feet of someone known or suspected to have the flu. Your doctor may give you antiviral drugs to help prevent the flu.

If you have cancer and have not received treatment within the last month, or you have had cancer in the past but are cancer-free now, and you have had close contact with someone known or suspected to have the flu, call your doctor and ask if you should receive antiviral drugs.