Follow-up Care After Cancer Treatment
Untitled Document
Key Points
- Follow-up cancer care involves regular medical checkups that include a review of a patient’s medical history and a physical exam (see Question 1).
- A key 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) (see Question 1).
- Follow-up care visits may also be helpful for identifying and addressing treatment-related problems a patient may have, or checking for problems that continue or can arise after treatment ends (see Question 1).
- Follow-up care is individualized based on the type of cancer, the type of treatment received, and the person’s overall health, including possible cancer treatment-related problems (see Question 3).
- There are a few clinics that specialize in long-term follow-up care after cancer for adult and pediatric cancer survivors (see Question 4).
- It is important for people to keep a copy of their cancer treatment records. 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 (see Question 7).
- The National Cancer Institute does not have guidelines for follow-up care, but some organizations do provide these resources (see Question 10).
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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
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