This is a question we get a lot.
What is cancer survivorship? How does one survive cancer? Can one survive cancer?
Typically, many people associate survivorship with being cancer-free. And yet for some, being cancer-free is not a typical endpoint, as their cancer cannot be cured, only managed. And with the fear of recurrence on the back of every cancer patient’s mind, does not being cancer-free take away from your survivorship? Some believe that you are a survivor the moment you have been diagnosed with cancer. This definition may ring hollow, as how can one survive their cancer the moment they find out they have it? Perhaps this represents a strong determination to survive cancer, or a reflection of the fact that many or most people do survive the cancer in question.
Typically, we look at the five-year survival rate. But sometimes people who are considered a survivor even though they are still undergoing treatment five years after they were diagnosed. Many patients who have metastatic or stage 4 cancer are surviving, sometimes for years. It is no longer an oxymoron to hear the words “metastatic” and “survivor” in the same sentence together.
In reality, survivorship encompasses many of these differing definitions, and likely more. We ascribe to the three-phase model. A survivor begins as an acute survivor, which lasts from diagnosis and throughout treatment. Then extended survivorship begins, which focuses on post-treatment issues. Finally, permanent survivorship is for those who have gone years without cancer treatment and recurrence seems unlikely.
Of course, survivorship comes with its own issues. From side effects caused by the cancer itself and from treatment to loss of quality of life to the financial burdens associated with cancer care, some people may truly wonder if they’ve survived or simply transitioned to yet another challenge. With some people considering medically assisted dying (MAID) around issues of poverty, side effects like pain, family breakdown, can we consider these people survivors? And if not, how do we provide the support these people need to become survivors?
And so we are asking for your input. What is a cancer survivor to you? Email us your answers to info@survivornet.ca and we will showcase as many answers as we can. Deadline for submissions is September 15th.
I am a “survivor” as is my wife, my brother, my niece, many cousins, and many friends. I hate the term “cancer survivor” as do many others because it implies surviving a great tragedy which is, I believe, overly dramatic. It is as if we walked out of living in the jungle for two months following a plan crash. The term needlessly conveys a stigma to all of us who have gone through treatment as if we miraculously and luckily somehow survived with out lives intact while others were not so fortunate. Maybe when the term was first coined it was reflective of the chances of surviving a cancer diagnosis but that is no longer the case. I have counted about 30 people I know who have been treated for cancer and all but one have gone for 10 years or more without recurrence. Maybe it’s time to change the terminology.
It has often crossed my mind that the term would be more accurate if it was “cancer treatment survivor” because it was the treatment and its side effects that caused me the greatest pain and suffering (but thankfully spared me from something even worse). Going through cancer treatment is very, very tough and some people end treatment early because it is so difficult to tolerate yet knowing the increased risk of recurrence. I do know one person who elected MAID rather than continue treatment. It can be that bad. It would also help others to better understand what cancer patients are going through during treatment because it seems the public is ignorant on how much cancer patients can suffer during treatment. Then maybe cancer patients will get the empathy and care at the right time and not later when they are finished treatment.
I think a cancer survivor who can keep their diagnosis in perspective, that they are still their self but now have cancer. The cancer is part of their life, but it doesn’t define who they are. I think a survivor is someone who can go through treatment with hope and resume their life. It may not look exactly the same, but a life is what you make it. As someone who has survived chemotherapy and radiation and been in remission for over 6 years, I am proud that I have continued my life. I do not dwell on my cancer experience, but it is still in my mind and as new things crop up, I consider if it could be the cancer returning, but do not push the cancer-panic button automatically.
I am in my fifth year following a prostate cancer diagnosis. Following surgery, radiation and ADT I have been informed that there is a 50% chance of recurrence. In my view, I have survived each of my treatments (although with some continuing side-effects) but do not consider myself an overall survivor. I describe my relationship with this disease as a ‘journey’ or an ‘adventure’ but I’m definitely not a ‘survivor’. When I die of some other cause then I will have survived cancer.
Yes, it is still an “oxymoron to hear the words “metastatic” and “survivor” in the same sentence together”. I have been living with metastatic disease for 12 years. This is part of a presentation I wrote, but was unable to deliver due to toxicity, and thus was delivered for me, at the CCRC 2019.
“I remember the gurus saying that “one day metastatic breast cancer would be a chronic condition,” which translated into “just how lucky we would be.” And I do admit, it has a lot more appeal than dying. But no one ever mentioned the toxic load that would build after years of therapies or maybe I just didn’t want to hear. No one ever mentioned the unrelenting fatigue, the aches and the nausea; frail and breaking bones. There is also neuropathy, heart toxicity, severe bone pain, mental stress, which so many metastatic patients endure. And for many of our sisters and brothers world-wide, there is also the inability to receive treatment, or financial toxicity.”
So yes I find it an insult to be lumped in with those who have endured a short treatment regimen, or even those who fear recurrence, both of which I and those like me have also gone through. I am not saying that early treatment or fear should be taken lightly; I do understand. I can’t comment on curative treatment, which has severely crippled “survivors” making their lives a living hell, but I do know metastatic disease and the “journey” are something else – walk a mile in my shoes. So imo, lumping us all together is so slighting.
P.S. and then we run out of energy, will or treatment lines and die.