Acute, Long-term, and Palliative Survivorship

March 26, 2010

Recently, I find myself talking about survivorship in many forms. Have you ever stopped to consider what phase or form of survivorship you are currently living? Have you considered planning for the next phase of your survivorship?

Everyone is familiar with the word “cancer,” but not everyone understands how truly expansive the term really is. What do I mean? Cancer describes many many many diseases which all have one common theme: uncontrolled and unnatural cell growth in the body. The cells that grow too quickly can cause many different problems, and the nature of those problems is heavily dependant on the location of the uncontrolled cell growth – in other words the type of cancer (e.g., breast cancer, lymphoma, skin cancer, liver cancer, pancreatic cancer).

The National Coalition for Cancer Survivorship (NCCS) pioneered the definition of survivor as from the time of diagnosis and for the balance of life, a person diagnosed with cancer is a survivor. 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 caregivers who are affected by the diagnosis in any way.

“Cancer” is a huge word. “Survivorship” is a term that stems from “cancer,” so it is an even bigger word. What do I mean? Cancer covers many diseases, yet survivorship describes the varied after-effects of the multitude of cancers. In short, survivorship describes the variation of the variations. Some times, it is hard to get my mind around how encompassing survivorship can be – and the crazy thing is: survivorship is expanding. Survivors, medical professionals, and caregivers are all identifying and describing new aspects (positive, negative, and neutral) of cancer survivorship.

Survivorship starts with diagnosis. I have even had serious discussions with leaders in survivorship who feel that survivorship in fact begins with prevention – before a diagnosis. Since survivorship begins at diagnosis and we know that each diagnosis sets each survivor on a unique path defined by the survivor’s life before the diagnosis, the cancer itself, and the medical team treating the survivor, it is easy to understand how quickly survivorship becomes a “big word.”

One of my responsibilities here at the CT Challenge is to develop survivorship information, so I am making an unofficial announcement. If you read our website, our hard copy materials, or this blog, you are going to see some changes in our language. The CT Challenge is going to take another step in thought leadership in survivorship. We are going to integrate more specific terms into our language because survivorship is not a one-size-fits-all science. In fact, it is exactly the opposite. We are going to start with these basic definitions:

Acute survivorship describes the time immediately following a diagnosis through treatment and the time after treatment in which a survivor is actively recovering from treatment and the physical effects that made cancer clinically apparent (what symptoms and signs made the cancer available for detection by the survivor or a physician). Acute survivorship doesn’t have set time period. It can be very short (just a few moments for some cancers that are identified as “watch and wait” or years and years for cancers that persist in uncontrolled growth and require consistent treatment for long periods of time).

Long-term survivorship describes the period of time after acute survivorship through the balance of life. During long-term survivorship, a survivor might have very little or even no interaction with cancer. In other words, a long-term survivor might all but forget cancer. But that is only one end of the spectrum. The polar opposite might also be true; a survivor might experience recurrence or a second cancer diagnosis. A survivor might experience late effects of cancer and treatment, or long-term survivorship can describe the continuing effects of cancer and treatment that will persist for a survivor from cancer through the balance of his or her life.

Palliative survivorship is still another phase of survivorship. While medical treatments have improved, we know all-too-well that some cancers are identified too late or are too invasive or are too complicated for even the most cutting edge medicine. Palliative survivorship does not describe “giving up.” It describes improving the quality of the balance of a survivor’s life.

As you can imagine, the average needs and most common complications of individuals vary greatly depending on which phase of survivorship the individual is in. Indeed survivorship is a big word; however, the over-arching goal of every stage of survivorship is the same. Survivorship’s aim is to improve the lives of cancer survivors.

Think about yourself. What stage of survivorship are you currently in? Would you define your phase of survivorship as something different than what I have outlined above? If so, please let me know because ultimately survivors define survivorship. If you think about it, that is a comforting and powerful statement: Survivors define survivorship.