In my work as an Oncology Nurse Practitioner, I've talked with hundreds of cancer survivors. I'm constantly humbled by their courage and grace. The needs of people affected by cancer are what send me out the door every morning. I care about you, the quality of your life, and your ability to keep yourself healthy. I worry about your self image and your trajectory of adjustment after cancer.
The concept of a cancer survivor is relatively new. The need for a term to describe people who have come through cancer alive is a testament to the progress we've made in cancer treatment. By 2050, there will be 50 million cancer survivors in the United States. That's a huge number of people who will need support and care from their loved ones, communities, and Cancer Survivor Wellness Coaches!
What is a Cancer Survivor?
The term cancer survivor is not perfect. The word survivor is subject to interpretation and scrutiny. Anyone diagnosed with cancer is a survivor, whether you learned of your diagnosis yesterday or ten years ago, whether you're curable or not, whether you're in the throes of treatment or anticipating your first treatment tomorrow. You are all surviving cancer in your own way, exactly where you are now.
The American Society of Clinical Oncology's says the following:
"Although ASCO endorses the National Coalition for Cancer Survivorship definition of a cancer survivor as starting at the point of diagnosis, the focus...is on individuals who have completed curative treatment or who have transitioned to maintenance or prophylactic therapy."
As you can see, this professional society clarifies the definition of survivorship for practical reasons. Dividing cancer in "before and after" terms helps focus the care each population needs - those patients being actively treated have widely different needs than those in their post treatment phase.
This is the concept and definition I use at Brio. For me, a cancer survivor is someone who has completed curative therapy or is in remission. I gear information to survivors who are cured and need help healing and staying well.
From Victim to Survivor
The term "cancer victim" is out of vogue. It's true, people with cancer did not choose the diagnosis - goodness no. They are unwilling participants in this game of medical roulette. The majority of people with cancer have some degree of physical and/or emotional suffering that is certainly not voluntary. So I concede there is a small aspect of victim-hood that is inherent in the cancer experience.
The problem with defining a human being as a victim is it causes the person to understand themselves as helpless. Telling you, cancer survivor, that you are helpless is robbing you of the opportunity to control your destiny. And that's not fair, just, or true. I don't subscribe to the idea that you are helpless. Truthfully, based on my experience, it's the complete opposite.
Cancer survivors understand to their core that life is precious, every living second. That knowledge is so powerful that it can throw a person off their game - big time. It can cause an unpredictable spiral to a bad place they didn't know existed. But if used correctly, that power can move mountains. It's my job to help cancer survivors harness that power and control the spiral upward to the best place they can imagine.
The term survivor moves us away from the idea of cancer victim-hood. Survivor acknowledges the risks in a cancer diagnosis and how those risks evolve during treatment and beyond.
Cancer Survivorship as Chronic Disease
Cancer certainly has an acute phase. I picture the acute phase during diagnosis, staging, and treatment - this is where the action is, where you get the most medical support, the time your family and friends surround you, bring you food, wash your car, pay your bills. It's where our system and society are designed to give you the help you need.
The chronic phase is what comes after treatment: surveillance and survivorship. It's not flashy for your friends and family because you're cured. Your medical providers have moved on to sicker patients. But you are dealing with the chronic issues that really effect your life and function, like medical trauma and the permanent side effects of treatment - fatigue, chemo brain, radiation effects, anxiety, depression, physical deconditioning, and poor nutrition.
So what is to be done about the chronic phase? First, recognizing the effects of cancer don't just disappear is of primary importance for you, your family, and your cancer team. Second, your needs should be skillfully managed AND you should be empowered with information and support.
Taking Survivorship Beyond Illness
There's a common experience that occurs during survivorship. Many survivors enter a searching phase, or go on a quest to give their lives new meaning. You might feel the need to redefine yourself because indeed things are different, not just physically, but existentially as well. You might search for other people who have survived cancer and seek advice in online forums or support groups. It's a delicate time because while searching, survivors can find great hope and wellness if they do it right. You have the potential to be supremely motivated to change for the better in this phase.
This is the sweet spot I want you in. Right there. It's the point at which you have the highest potential to move from feeling chronically ill to chronically in control of the way you feel. It's the time you need the most important, accurate information and a streamlined method to implement good habits for constructive change.
Some cancer survivors get stuck in the searching phase. Getting stuck here can lead to more severe mental and physical health problems. These are survivors that need the help of a defined approach to feeling well after cancer. Awareness of this need to support survivor health is growing with the survivor population, but not all patients have access to a comprehensive cancer center with a well-developed survivorship program.
Resources in our health care system are skewed toward the sickest patients. In my practice, I wasn't able to spend the time with survivors they needed and deserved. I craved a survivor wellness resource for my patients for so long, I decided to create it myself!
Brio Survivor Wellness provides survivor wellness coaching and courses, particularly for survivors who need help addressing the effects of cancer related fatigue after treatment. We also aim to provide a community of like-minded, educated survivors in an online setting for unparalleled peer support.
Brio provides services in a HIPAA compliant online format to meet the needs of survivors in remote areas, those physically isolated at home, people who prefer an innovative online approach to services, or those just too busy to make appointments in an office. If you'd like to read more about survivor wellness coaching, check out the blog post all about it.
As always, thanks for being here Survivor.