Define Your Own Survivorship

December 7, 2009

Recently, US and Canadian oncology nurses met in Montreal to discuss the state of cancer survivorship care. Nurses are on the front lines of survivorship care, so it is imperative that we listen to what they have to say. Research does support the important role of nurses in survivorship care both because survivors seem to like their interaction with nurses and because nurses are a key contact point within the health care system that survivors encounter. The nurses suggested that several “big picture” challenges exist in the effort to provide excellent survivorship care; however, in particular, the president of the Oncology Nursing Society, Brenda Nevidjon, highlighted that the definition of survivorship is highly variable across health care providers, interest groups, and survivors themselves.

When I read about this, it got me thinking. Sure, it is important to know exactly how nurses, doctors, and other professionals are defining survivorship, but it is probably most important that survivors define survivorship for themselves – each individual survivor might (and probably does) have a unique definition. If a survivor takes the time to understand his or her own priorities, he or she will probably be better able to communicate with nurses and physicians who are trying help them. Ultimately, it seems it is both the prerogative and responsibility of the survivor to take the time to define one’s own survivorship priorities.

In fact, it seems to be the natural first step when trying to develop a plan for survivorship - no matter where you are in your survivorship journey. What do I mean by “define survivorship”? I’m actually talking about something very simple. While survivorship is a huge topic, your unique survivorship is highly specific. Your survivorship includes choices and priorities that define the balance of your life after cancer. The beauty of this is that you get to define that survivorship by making those choices, and to help you make the best choices for you, you can start by ranking those priorities.

Here is what I suggest – start with a few categories (e.g., activity, family life, sexual life, work, mental well-being), and ask yourself what is most important to you within each category. For example, you might look at the “activity” category, and think “well, I want to be active for the rest of my life, and maybe I want to be more active than I have been in the past. I would like to be able run a few miles per day and take a long bike ride with my spouse.” Or you might look at the “the sexual life” category, and say “Wow, I am only 41, and I have lot of life left! I haven’t even discussed having more kids with my spouse, but I think we may want to have one more child, so both sexuality and fertility issues are really important!” For both of those hypothetical examples, there are measures you and your care team can take to help you achieve those goals and realize those plans.

Any way you choose to do it, defining your priorities for survivorship will help you achieve a happier lifestyle because you will be better able to communicate to the doctors, nurses, and other health professionals what survivorship means to YOU.

Christian McEvoy, MPH

Director of Survivorship Information

christian@ctchallenge.org