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.
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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.
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 . 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.
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 study and the Assessment of Patients’ Experience of Cancer Care 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.
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.
Does NCI have guidelines for follow-up care?
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 summaries, called What to Know: ASCO’s Guidelines, are available on ASCO’s Cancer.Net website.
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.
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. Journey Forward also provides an electronic tool, the Medical History Builder, 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 Spanish version of the Plan is also available.
The National Comprehensive Cancer Network (NCCN) is a nonprofit organization that is an alliance of cancer centers. The NCCN has a consumer website called NCCN.com. This website includes information about follow-up care for cancer, particularly guidance on making formal survivorship plans on its Taking Charge of Follow-up Care page.
