Cancer survivorship is about living well with, through, and beyond cancer. Increasingly, more emphasis on care for people with cancer exists from the moment of diagnosis and through the balance of life. Cancer patients know that their needs extend far beyond the time period when they receive cancer treatments. The medical community continues to learn more about and provide a broader spectrum of care for the needs of cancer survivors. Some facilities in the United States now have Cancer Survivorship Centers.
What is a cancer survivor?
The National Cancer Institute's Office of Cancer Survivorship defines the term cancer survivor from the moment of diagnosis and through the balance of life for patients and their loved ones.
An individual is considered a cancer survivor from the time of diagnosis, through the balance of his or her life. Family members, friends, and caregivers are also impacted by the survivorship experience and are therefore included in this definition.
-Adapted from the National Coalition for Cancer Survivorship
Other definitions for cancer survivor exist. Some people choose to call themselves a cancer survivor when they are declared cancer free.
Think about what definition works for you.
What is cancer survivorship follow-up care?
People with cancer need follow-up cancer care to provide ongoing evaluations of their health after the cancer diagnosis and treatments. This includes appointments with doctor for checkups. The specifics of the follow-up cancer care depends on the cancer type, treatments, and other health factors.
At your first follow-up visit, talk with your oncologist about your follow-up schedule. Generally, survivors usually return to their oncologist 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 oncologist will check the status of your cancer and look for side effects from cancer treatments.
Cancer survivorship follow-up care must include attention to the whole person. When cancer treatments end, patients often feel many emotions. There can be a new sense of the unknown in the transition to recovery. Support systems shift after the acute phase of treatments.
Explore our resources for information about ways to empower your health and healing during and beyond cancer with care for your whole physical body, mind, and spirit, including social and environmental health.
Stages of the Cancer Journey also offers insights about discrete stages through cancer with specific characteristics, existential issues, needs, and interventions.
Another important resource for cancer survivors is Maps to Integrative Cancer Care with helpful information toward identifying whole person health and healing resources, strategies, and support to reduce cancer risk, improve cancer-related survival, and quality of life.
What are some common questions about cancer survivorship follow-up care?
- Which doctors and other survivorship providers should I see after my cancer treatments are completed?
- How often should I see my doctor and other providers?
- What tests are necessary and with what frequency?
- What long-term effects are associated with my cancer treatments?
- What help is available to address any side effects from the cancer and its treatments?
Dealing with these aspects of the cancer journey can feel challenging. Developing and maintaining a follow-up care plan will help you feel empowered. This is your life and self-care helps you to feel stronger.
Explore additional questions in Questions for Evaluating Cancer Treatments and Providers.
What issues should I discuss with my oncologist at cancer survivorship follow-up appointments?
Open communication with your oncologist is important. You and your oncologist need quality information to optimally manage this part of your health care. Consider reviewing this list when you are preparing and going to see your doctor.
- New symptoms
- Pain of concern
- Physical problems that impact you daily or diminish your quality of life such as insomnia, fatigue, weight gain or loss
- Other health challenges you are dealing with
- Medicines and supplements such as vitamins or herbs you take
- Other treatments you use
- Emotional angst such as depression or anxiety you deal with currently or earlier in your life
- Changes in your family's history, including with cancer
- Topics of interest that provide more information such as new research about cancer, cancer treatment side effects, and other health issues.
Why are medical records an important component of cancer survivorship follow-up care? What records are most important?
Request a written summary of your cancer treatments from your oncologist. The summary should include health issues that need to be followed. Bring a copy of this summary to talk about your follow-up plan to new doctors, especially your primary care doctor.
Include your medical records in a folder, binder, file cabinet, or another organizational system. Read them when you see new doctors. Your system will keep key facts about your cancer in one place for your convenience.
Other kinds of health information you should keep include the following.
- Your diagnosis date
- Your type of cancer for which you received treatments
- Pathology report(s) that describe the type and stage of cancer
- Providers, medical centers, locations, and dates of specific treatments
- 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
- Potential long-term effects of treatment
- Contact information for all health professionals involved in your cancer treatments and follow-up care
- Any problems that happened during or after treatment
- Information about supportive care you received
Where can I find more information about cancer survivorship?
Top Cancer Resources has a section called Cancer Survivorship with additional information on the topic.
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