Survivorship
Life After Diagnosis and Treatment
The cancer experience doesn't end when treatment ends. No one forgets that he, she or a loved one once had cancer. After remission, you may still feel anxiety about your health and fear that the cancer may return. This is especially true when you:
- feel symptoms, even when they turn out to be those of the common cold
- need follow-up visits
- return to your doctor's office or the hospital - places where your most frightening memories may be
- reach a five- or 10-year anniversary of being diagnosed or being in remission
Physical and Emotional Adjustments
You may feel elated when your cancer treatment ends. Some people may expect to return to feeling normal very quickly. However, many people may find that this feeling doesn't last. This is a normal reaction. Don't put pressure on yourself - or let others put pressure on you - to be upbeat and positive. It may take some time for you to heal physically after treatment, and until that happens, you may not be able to heal emotionally.
Many survivors progress to a "new normal." The experience of cancer may affect your perceptions of yourself and the world. You may feel a sense of vulnerability that you never had before you were diagnosed. Adjusting emotionally is a process that takes time. Expect ups and downs. But you may also find that, in some ways, the new normal is more rewarding and gratifying than the old normal.
Cancer survivors say they're sometimes afraid. But they feel less afraid when they focus on things other than their illness. They also share a peace that few other people know. Survivors can often enjoy the many ordinary moments that most people ignore. Cancer survivors often say that different things are important to them now. Others say they feel able to handle anything life brings.
Important Guidelines for Survivors
- Survivors need physical examinations yearly or more often.
- Regular examinations include cancer screening and screening for long-term and late effects of treatment.
- Survivors don't necessarily need a cancer specialist for routine checkups and screening, but they do need to see doctors who understand their previous treatment and its risks. Specialists and primary care doctors can work as a team to provide the best care.
- Survivorship programs, focusing on life after cancer, are offered at several major hospitals around the country.
Resources for Survivors
Resources for cancer patients and survivors include:
- The Leukemia & Lymphoma Society's (LLS's) information specialists. Contact an information specialist, Monday through Friday, 9 a.m to 6 p.m. ET, at (800) 955-4572 or infocenter@LLS.org or get live online help (10 a.m. to 5 p.m.). You can also download free booklets and other materials.
- Federal and state laws. Laws such as the Americans with Disabilities Act (ADA) protect qualified cancer survivors from job or insurance discrimination. For more information, visit the ADA website and its Cancer Legal Resource Center.
- Vocational rehabilitation. Many states offer vocational rehabilitation services to qualified individuals. Eligibility and services vary by state. You can find a list of state offices at the Office of Special Education and Rehabilitative Services website.
- Community support groups. Local groups offer support and networking opportunities. Read How To Find Resources in Your Own Community If You Have Cancer from the National Cancer Institute (NCI) for advice on finding community resources.
- National advocacy organizations. Advocacy organizations offer support, information and advice for cancer survivors. Groups include:
- The Centers for Disease Control and Prevention's (CDC's) Cancer Survivorship.
- Livestrong.org's SurvivorCare, which assists cancer survivors and has a list of NCI designated comprehensive cancer centers that are members of the Livestrong Survivorship Centers of Excellence Network.
- The Office of Cancer Survivorship of NCI
- The Children's Oncology Group. The group has established "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent and Young Adult Cancers." Although designed for children, many recommendations can be adapted as a starting point for adults.
- The National Comprehensive Cancer Network (NCCN). NCCN has incorporated into their treatment guidelines limited recommendations for surveillance and management of common issues facing survivors. For a list of survivor follow-up clinics, search the National Center for Cancer Survivorship (NCCS) Resource Guide (type "clinics" in the Keyword box and then search).
- Institute of Medicine (IOM). IOM produces a helpful fact sheet called "Cancer Survivorship Care Planning" and other informative publications for cancer survivors.
See Other Helpful Organizations for more resources.
