Dr. Linda Watson, scientific director of Applied Research and Patient Experience, Cancer Research and Analytics at Cancer Care Alberta, has worked with Albertans with cancer and studied their experiences for over 30 years. She is familiar with the successes and challenges of diagnosis, treatment and recovery. Here, she discusses the complex notion of survivorship.
Q: What is survivorship?
There is no single definition for survivorship. A common one is the state after primary treatment, where people are in a recovery phase. The focus of care in survivorship is on how to help them live as well as possible and adapt to a new normal.
Q: Is it a new term?
It was first coined by Dr. Fitzhugh Mullan in 1985. In his article “Seasons of Survival: Reflections of a Physician with Cancer,” in The New England Journal of Medicine, Mullan discusses three “seasons” of survivorship. The acute phase is when the individual is dealing with the [diagnosis] and treatment. The extended phase includes the fear of recurrences and recognition of long-term treatment implications, such as cognitive decline. The permanent phase is a period of stability, where the likelihood of cancer returning is small.
Q: What are the benefits of naming survivorship?
Historically, we have put our energy into how to treat cancer. But as treatments got better and people were surviving longer, survivors started telling us how hard it was to return to their lives after treatment – physically, emotionally, socially and psychologically. We realized these issues were not well understood or conceptualized. Also, medical management was needed to deal with residual effects of the different treatments, such as cardiac implications following certain breast cancer chemotherapy treatments. This is all fairly new – we struck a provincial steering committee to examine how to address these needs in 2013. Putting a name to this concept has allowed us to investigate the unique support needed for this stage of cancer care and for a programmatic response to the needs cancer patients have in the survivorship phase.
Q: Are there disadvantages to the term?
There are limitations with the term survivorship. Some individuals object because the term sounds like the bare minimum. They don’t want to simply survive; they want to thrive and live their best lives after cancer. Many also reject “battle metaphors” like killing cancer or surviving the war against cancer. Cancer is made of our own cells – it is not a foreign invader. Being at war with yourself can bring a lot of negative energy. Some prefer a more positive paradigm, a more harmonious perspective. It is very personal, and we will never find the perfect one-size-fits-all word.
1. Cancer Care Alberta’s “After Treatment” self-management booklet covers areas like recovery, relationships and more
2. Follow-up medical guidelines at albertahealthservices.ca can help direct conversations with your family doctor
4. Community agencies like Wellspring offer a variety of educational and support programs