While out on a training run the other day with friends the discussion was centered on current changes we were experiencing in our lives. Some were changes we had personal control over and some were changes that were thrust upon us with little preparation. Some were occupational changes and some were health related changes. In the process of contemplating life changes and transitions we all undergo, it struck me that often the most impactful life change is when one hears the words “You Have Cancer.”
From that moment one is thrust into a vortex that creates incredible chaos for a period of time in their life. These changes continue throughout their cancer experience especially as they attempt to live their lives as a cancer survivor. In my role counseling cancer patients and survivors I vividly recall the emotional and psychological reactions individuals experienced when they heard those three words “You Have Cancer.” From that moment on individuals and their families describe the experience of riding an emotional roller coaster.
What does Survivorship mean? What skills are needed to maneuver through survivorship? In 1972 there were approximately 3 million cancer survivors. This corresponded with the level of medical technology available for identifying and/or treating cancer being in its infancy. By the early 80’s, as medical technology progressed and treatments improved, cancer patients began to live longer post diagnosis and treatment. It was at this time a group of medical professionals came together with the goal of defining cancer survivorship. These professionals determined they would no longer accept the standard survivor definition as, “being alive 5 years post treatment.” Instead they determined and set in place the following as the definition for cancer survivorship “an individual is considered a survivor from the moment of diagnosis moving forward.”
As medical science continued to advance the number of individuals who were cancer survivors reached more than 10 million. These cancer survivors were at various points in the cancer trajectory. In 2005 The Institute of Medicine – recognizing the medical and psychological issues cancer survivors were reporting published their report From Cancer patient to cancer Survivor: Lost in Transition. This report spelled out the challenges faced by cancer survivors and set the framework to develop strategies for how to meet the needs of the more than 10 million cancer survivors. Today some 20 years later there are approximately 13 million cancer survivors who are living with cancer in their life and attempting to live as cancer survivors.
When an individual is in the midst of active cancer treatment there is a flurry of activity (doctors’ visits, chemotherapy, etc) and tremendous focus on how they are doing (both physically and emotionally) from multiple providers (doctors, nurses, family members and friends). It is often not until the active cancer treatment is completed when individuals notice an increase in emotional distress (anxiety, worry, depression sadness). The transition to living as a “survivor” triggers thoughts of “what now, what next.” The biggest fear patients express is focused on anxiety about a cancer recurrence or a cancer progression. The most common worry expressed is focused on how to know if the cancer comes back. This can create paralyzing fear. Others struggle with how to return to a “normal” existence (and what does normal mean for them and will they be able to return to their life before cancer).
I call this the Before Cancer (B.C.) and the After Diagnosis ( A.D.) experience. This is when patients realize they have to face a “new normal.” Speaking of a new normal… for most, if not all cancer survivors, they find they are not the same person they were before. Many acknowledge they no longer find the same things important AD that seemed so important BC. One young female survivor commented during a visit that her friends just “didn’t get it” and that she found herself feeling disconnected in conversations with her friends as she realized she no longer worried about the same things her friends worried about. She commented her friends often were unable to understand how her life had changed after her diagnosis. She also reported spending increased time with her family and children. This time became more important to her as she realized she might not live to see her young children grow up and have children of their own.
Survivors often will struggle with each medical visit and worry will they get bad news. Additionally, they experience increased anxiety or distress if they experience physical pain or discomfort. The fear is often that the pain or discomfort indicates the cancer has returned. Their lives have indeed changed forever and survivorship is a constant maneuvering between attempting to live a “normal” life and recognizing that cancer is part of this new normal. As one of my patients stated it is like having a constant companion traveling down the road of life you can’t ignore but you don’t want to allow to take over your life.
For many this is the first time that they are faced with their own mortality. Many may still perceive a cancer diagnosis as a death sentence. As they find themselves face to face with the reality of dying they may reevaluate the path they are traveling.
The goal is to help survivors to learn how to be fully present in their lives and live each day to the fullest so that there are no regrets. Survivors will often say as awful as it was to hear those three words “You have cancer” they look back as a survivor and realize how their lives have changed for the better.