Paul's Heart

What Does Ai Have Against Cancer Survivors?

(image courtesy of SciTechDaily)

It was a simple and innocent enough question I entered. Given my personal status, and my knowledge, I thought for sure, asking Ai would give me at least a similar or more accurate response to my question. But might I actually know more than Ai? Or might I just have the one characteristic that Ai lacks, the ability to care about the impact of the question?

“What is the average lifespan of a Hodgkin’s Lymphoma survivor?” It is a simple enough question, and if you have followed “Paul’s Heart,” you know at least one Hodgkin’s survivor of at least 35 years. And you would think medicine and other advocacy groups would have some sort of statistic to reflect others like myself, and there are plenty more, at least a thousand more that I am personally aware of.

I do not chase after this statistic constantly. The last time I looked, still the only number when it came to cancer survival rates, was still being based on a 5-year average. Sure, it gets acknowledged that survivors of Hodgkin’s Lymphoma can live longer, but there still is not any kind of verfiable or concrete information, mainly because it has never been tracked. A patient hits the five year mark post treatment, and then gets released by their oncologist, in theory, never to be heard from again, alive or deceased.

So since medicine and society do not have any solid stance on my question, I put it to Ai. The response was based on twenty-one sources, including ASCO, City Of Hope, NIH, ACS, NCI, Blood Cancer United (formerly Leukemia And Lymphoma Association), Lymphoma Research Foundation, NHS, Cleveland Clinic, and more. “While there is no single “average lifespan” for a Hodgkin’s Lymphoma survivor, most patients have an excellent prognosis, with long-term survival rates approaching those of the general population” was the answer. I guess “general population” refers to those with no history of cancer. Ai also does not seem willing to commit to any kind of number, whether it be by years of survival, or by the percentage of those having long term survival. Ai does admit to several factors influencing survival from age of the patient, stage of the cancer, and of course, treatments administered. But I already knew that.

My Ai search went on then, with the usual “survival measured in five-year and ten-year” relative survival rates (an improvement from just five-year), based on data from 2015 to 2021. Again, keep in mind, data was not kept on those of us treated in the 20th century and at least the first decade of the 21st century. Ai does admit that many live decades beyond their diagnosis, and that is because of documention by the medical community of survivors like myself, but there still are no solid numbers other than what has been documented over the last ten years. And I know there are other Hodgkin’s survivors out there in the world.

Age is recognized as one of the factors that impact survivorship. It took a long time to give myself credit for survivorship longevity as long as I have, but I am still so inspired by those in their 40, 50, and 60 years of survivorship. And if you are saying “WOW!”, you bet WOW!!!. These survivors were more likely diagnosed in their early childhood or teen years. But that does not mean that those diagnosed as adults cannot have longevity. It just means that the trauma to their body is affected differently by the already aged and susceptible issues of an older human. I was 22 years old when I was diagnosed, turning 60 at the end of this year. And I know many who were diagnosed in their 30’s and 40’s, now in their 70’s. But why isn’t this information coming up in my searches, even with the assistance of Ai?

The other major factor recognized by AI impacting survivorship, treatment complications. For those of us treated prior to the mid to late 1990’s, it was possible we were not even expected to survive the toxicity of the treatments, let alone worry about survivorship. But as medicine continued to advance and find better and somewhat safer treatments, its toxicity still exists today, however with increased survivorship numbers.

Here is the problem, and Ai does not even seem to have a grip on this situation. What happens to those survivors who develop treatment-related complications such as secondary cancers, cardiovascular disease, pulmonary disease, as well as other issues? Ai’s answer for this is less than a hundred words, lifestyle and medical surveillance. And I would bet donuts to dollars, being monitored following the five-year mark is still not mainstream advice to Hodgkin’s survivors.

Science and medicine knows this monitoring is crucial to survivorship. Well at least those that treat survivors like me, impacted by our treatments. Thirty-five years out, my treatments have had a lifetime impact on my heart, my carotid arteries, my lungs, my thyroid, my esophagus, the muscles of my upper torso, my spine, my pancreas, fertility, and of course dealing with several emotional issues, one being survivor’s guilt. So I am quite lucky, I have been monitored since 2009 following the discovery of these late effects, but still, this was thirteen years after my “five-year graduation” from cancer, unsurveilled, and clearly lucky, with the first issue I developed was caught just as I was about to have a fatal heart attack. Had I been followed up sooner, the situation would not have been as dire.

And there are many others, as I have said, at least more than a thousand that I personally know who did not have the monitoring until it was either near too late or just oncoming. So does everyone develop these issues? According to Ai and its resources, that number is “not definitively established.” And figuring this out is as difficult for humans as it is for Ai. With evolving treatments, varying studies, and longer latency periods, a bigger factor impacting this is human, and that is the ability to connect the health history of a Hodgkin’s survivor to any particular issue that has come up. But without a Hodgkin’s patient being told about later risks, and many still are not, survivors simply go on with their life, after Hodgkin’s, never giving it a second thought. And unless you are dealing with a known issue, you do not seek out that help, and that can erroneously affect statistics, diagnosis that make no sense for demographics, like when I was diagnosed with a widow maker heart blockage at the age of 42, due to my radiation treatments. Even the operating room was shocked to see someone “so young”. Medicine and science knows to look out for these things, yet it is not common recommendations to follow up lifetime with every cancer survivor for these types of issues.

And then there are those survivors who will simply bury their heads in the sand, like ostriches, ignoring the potential for problems or pretending it does not exist. After all, if you cannot see it, does it really matter? All a cancer patient wants is to live a long life after cancer, without cancer. Why doesn’t society and medicine recognize and more importantly celebrate when survivorship does happen? I am talking going beyond “ringing the bell” at the completion of treatment(which I never got to ring back in 1990 as this was not a thing back then). Our society frequently announces those who are diagnosed or battling cancer, and of course there are those that do not survive. But think about it, how many “celebrities” can you name who have survived cancer, let alone those personally in your life? Why do we not celebrate and recognize those survivors, giving inspiration to those newly diagnosed or currently in treatment, looking for support that there is so much to look forward to?

When I was diagnosed in 1988 at the age of 22, besides the chances of me beating cancer, my next question was how long I could expect to live after that? Would I live a long life? I have been writing “Paul’s Heart” nearly fifteen years, so you have seen all of my milestones and achievements so far in my survivorship. And I still have many more that I want to reach. But I am just one survivor. I love being able to share stories of other survivors and I have done this many times on this page. If you would like to share your story of survivorship, I would like to post it here, so that others could see more than just one survivor story.

Even if medicine and science never catch up, I have hopes that maybe Ai will.