Cancer Survivors - Definitions and Alternatives

Definitions and Alternatives

Macmillan Cancer Support in the UK defines a cancer survivor as someone who is "living with or beyond cancer", namely someone who:

• has completed initial cancer management and has no apparent evidence of active disease;
• is living with progressive disease and may be receiving cancer treatment, but is not in the terminal phases of illness; or
• has had cancer in the past.

The National Coalition for Cancer Survivorship (NCCS) pioneered the definition of survivor as being any person diagnosed with cancer, from the time of initial diagnosis until his or her death. This expansive definition of "survivor" includes people who are dying from untreatable cancer. NCCS later expanded the definition of survivor even further to include family, friends and voluntary caregivers who are affected by the diagnosis in any way. The US National Cancer Institute's Office of Cancer Survivorship uses a variant of this expanded definition.

The word survivor is a loaded term. Within the breast cancer culture, survivorship is conferred upon women who are perceived as having suffered emotional or physical trauma, even if their breast cancer was a non-life-threatening pre-cancerous condition like LCIS or DCIS. The term tends to erase and degrade people who are dying of incurable cancer. This idea of survivorship emphasizes and values longevity of life after diagnosis, while overlooking issues of quality of life.

Some people reject the term survivor as being a narrow conceptualization of highly variable human experiences. Alternatives include alivers and thrivers, which put emphasis on living as well as possible, despite limitations and disability. A third term, the diers, is used by some terminally ill patients who reject the claim that dying is part of survivorship or should be covered up with inappropriately optimistic language.

The term previvor has been used to describe unaffected carriers, those who have not diagnosed with cancer, but have a survived the predisposition, or higher risk, of cancer due to certain genetic mutations. As such, this is the first generation in human history who, armed with information about a predisposition to a cancer after opting in to DNA testing, can make informed choices prior to cancer diagnosis. The typical previvor has tested positive for a BRCA mutation and learned that she is at high risk for developing breast cancer and ovarian cancer, and is attempting to manage that risk through a combination of increased surveillance through mammograms, breast MRIs, pelvic ultrasounds, oophorectomy, bilateral mastectomy, and other medical procedures. There has been much controversy over the term previvor, due to the fact that the name compares these healthy women to people have actually been diagnosed with invasive cancer.