Life Five Years After Cancer

Do not let the title of my story fool you. I am almost seven times that far in life since I was diagnosed with Hodgkin’s lymphoma in November of 1988. One thing I remember though, clear as the day it was said, my oncologist quoting me that after five years in remission with clean scans and follow-ups, I would be done with my battle with cancer. This was confirmed at my final visit with my oncologist five years following my last treatment, when no future appointment was scheduled for me with him.

Of course, the “five-year” rule evidently did not just apply with the doctor, because as I tried to obtain health and life insurance upon completion of my treatments, I was denied and encouraged to reapply when I was “in remission five years.” Even the prospect of new employment (prior to the passing of the Americans with Disabilities Act) left me having to wait until I was in remission for five years, or so I was given that excuse for denying me employment.

Certainly, I understood the risks of relapsing after my treatments had ended. I know several other cancer survivors who faced this unfortunate situation. So, it only made sense to set a time frame when we should be clear of relapse without fear, not a guarantee, but pretty good odds. That milestone is five years.

Five years seems like a number everyone agrees upon, except for, well, the cancer survivor themself.

As I mentioned at the beginning of this story, I am a 35-year survivor of Hodgkin’s lymphoma. I remember what it was like, going through those early follow-up appointments, having symptoms that mirrored how I felt when I was first diagnosed, always worried about the “R” word: relapse. But I also remember what it was like, once I hit that five-year mark, and was told by my oncologist that I would no longer need to be seen. My cancer was behind me. If my sneakers could have left screeching tire marks as I left the oncologist’s office, they would have done so.

However, if I could go back in time, and ask just one question, it would be this: what can I expect life to be like after five years? Ten years? Thirty years? Is 50 years even possible? It seemed the doctor knew everything to look out for during those five years, knowing what I know now about my life after those five years, I feel there is more that he should have told me. In fact, I will gamble “dollars to donuts” that recent and current patients are not having “after-five-years” discussions, either. And they should be having this discussion.

Anyone who has been treated for cancer is given information about potential side effects for the treatments they will be getting — in the short term and in the long term. Back in 1988, not much was known about the long-term, you know, after the five-year mark. But those potential late-developing side effects after five years, not guaranteed but potential, are now known, mostly because of survivors like me and many others, who have lived decades past our treatments, needing medical attention and intervention for any number of issues: cardiac, pulmonary, skeletal, gastrointestinal, endocrine-related, skin or even a secondary cancer.

Were we simply not expected to live much longer after five years that nothing in our distant future would be discussed? With what is known now about the potential late side effects, why does the oncologist not at least recommend lifetime follow-ups for potential late developing side effects with a primary care physician, with a list of routine tests to be done every so often, then to be referred to a specialist as needed? Why did I have to find out the multitude of issues related to my treatments, mainly from other fellow long-term survivors who faced similar experiences? Why is this still the predominant attitude when it comes to treating cancer patients? Why aren’t cancer survivors being told about life after five years of surviving cancer, not just the time up to the five-year mark?

I am thrilled that I have lived long enough to see progress made in diagnostic methods and better and safer treatments, that what I went through, current patients do not carry as likely a risk for the late effects I deal with (three heart surgeries; potential for lung cancer; potential for esophageal cancer, the list goes on), there is still a potential for late side effects. And it would be better to catch these issues before they become life threatening. That might just make living life after cancer much easier.

This post was written and submitted by Paul Edelman, Jr. The article reflects the views of Edelman and not of CURE®. This is also not supposed to be intended as medical advice.

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