According to data from the Canadian Cancer Society and the American Cancer Society, the five-year breast cancer survival rate for women diagnosed with breast cancer is just around 90%. It means that of women diagnosed with breast cancer, 89% of us will be alive after five years. This “what is the probability of dying” question was certainly a rabbit hole I fell into when I was first diagnosed and learned the stage and type of my breast cancer. And I was told by my doctor, that if you make it to five years cancer-free, the risk of recurrence is small, and that is why you are typically transferred back to your family doctor and out of the care of an oncologist at that point. All good right?
But here’s where I get uncomfortable. I’m far from a researcher and a doctor and I may have it terribly wrong, but It feels like there is an assumption built into this five-year window that cancer is an older person’s disease. No research that I am aware of looks at survival beyond those five years, again, because it is assumed the risk of recurrence is so small.
Fear of recurrence
That said, those of us who have experienced a diagnosis know that the fear of recurrence never goes away despite these reassurances. We all know people in our cancer community who have had that other shoe drop on them. We know people who are diagnosed with distant metastasis and who die of the disease. And those of us who carry on past five years are who are still on drugs experience side effects from treatment that can erode or impede our quality of life, and cause other conditions and diseases later.
Even though I feel like a youngster, I am 59, so not exactly a spring chicken. Five years of survival for me is still too little. I’ll just be 62. And I joke that I have a cruise booked for my 97th birthday, so I am hoping for a lot more time than that.
Women are being diagnosed with breast cancer earlier
What is even more concerning is the women I know who are diagnosed at a young age. Recent research shows that the incidence of breast cancer among young women rising. I wrote about this topic here. Through the advocacy work I do these days, I have plenty of friends who are in their 40s, 30s and 20s who have experienced a breast cancer diagnosis. So, if you are a young mum of 32 diagnosed, are you ok with things going dark in terms of what survival looks like after five years?
In addition, the survival statistics that are gathered only deal with recurrence and distant metastasis leading to death. We all know in cancerland that things are not that black and white. We may not die of the disease, but it does impact our lives in many ways – physically, mentally, and emotionally. So what about that form of survivorship?
Breast Cancer Canada’s PROgress Tracker
One of the projects that I am quite enthusiastic about comes from Breast Cancer Canada. The organization launched PROgress Tracker a knowledge-based research study that is collecting Patient Reported Outcomes (PRO) data through the use of questionnaires from diverse experiences of breast cancer participants from diagnosis, treatment and surveillance over time. It is a first-of-its-kind study, and the plan is to monitor Canadian women who have been diagnosed with breast cancer over a ten-year timeframe. Data will be collected into a database for researchers and clinicians to analyze large population responses and learn more about breast cancer issues and improvements from the patient’s perspective. The data collected goes well beyond the standard survivorship questions covering other aspects of well being including mental health, self-acceptance, personal relationships and so forth.
I’m participating in the study and just completed my third check-in survey (research check-ins are every three months). It is a commitment that I’ll answer these questions for ten years, but it takes just minutes to complete. I am happy to do. I created AskEllyn to provide emotional support to those who follow in my footsteps because I feel that the emotional aspects of this diagnosis are not well understood and the supports are lacking. This study is an important one and hopefully will do its part to inform and improve care in the future, while offering us all a better understanding of the timeline of survivorship. Breast Cancer Canada is still actively recruiting to the study. If you are a Canadian woman diagnosed, I encourage you to join and contribute.
