Paul's Heart

Luck Versus Ignorance

In one of my last posts, I wrote that it was absolutely “worth it,” to have chosen the option to undergo difficult chemotherapy and radiation treatments for my Hodgkin’s Lymphoma. That post was written in hindsight, because I have had thirty plus years to look back and say, yes it was worth it. At the time, going through the actual treatments, physically, it was not easy. Emotionally, it was just as hard a fight as it was physically.

Making things more difficult, is if you are one of the fortunate ones, to be told, “you are in remission” before you have completed your full set of treatments. It is not hard to understand, that someone would want to bail on any further toxicity. Being a prime example, when I hear, “why do I have to go through the rest of the treatments when I am in remission?”, my answer is simple and never waivers. “You want the best chance of staying in remission. You got there, you want to stay there. Your doctor knows what it takes to do that. Finish the treatments. I should know, I am out over 31 years now. And I don’t think I would have had that chance if I had quit treatments halfway through, just because they said I was “in remission.”

To put it in terms that everyone can understand. When you take an antibiotic for a virus or infection, what does the doctor tell you? Finish the prescription. And why is that? You either feel better or a wound may look better, so perhaps you reason that it may make sense to “save” the rest of the medicine should you ever need it again. No. You finish the entire prescription so that whatever you are dealing with, is gone, for good. In fact, it is likely the medicine is continuing to work some days past the last dose. The same goes for chemotherapy or radiation treatments, you want the cancer gone, for good.

The next flawed thinking, enabled by doctors, is allowing a cancer patient to think, just because you are done with your treatments, that means you are all done with doctors. This gets complicated as survivors strive towards a magical “five year mark,” an imaginary bench mark many entities such as insurance companies and employers use (secretly because it is illegal to discriminate) to consider you “safe” for hire. Mentally for cancer survivors, that five year mark is further proof, we have nothing to worry about with our health. And that can be wrong thinking, very wrong.

Or, you could be lucky, very lucky.

With Hodgkin’s Lymphoma being one of the few cancers with such a high remission rate, that also means there are a lot of survivors. This is where luck versus ignorance collides. I am going to keep this simple so as not to get lost in any weeds. There are roughly 50,000 new cases of Hodgkin’s diagnosed each year. Times that by 30 years (though I was diagnosed 32 years ago), would give you 1.5 million cases of Hodgkins. With a generous estimate of a survival rate around 90% (depending on the type of Hodgkin’s), that would leave roughly 150,000 patients who would not survive what is considered one of the top cancers to treat. That means 1,350,000 survivors, long and short term in theory could exist. If we cut that number in half, 675,000 would be what some refer to as the “long term” survivors, survivors having dealt with a much higher level of toxicity of treatment whether radiation or chemotherapy prior to the turn of the 21st century.

I am involved on several social media pages for cancer survivors, and in one, specific to Hodgkin’s Lymphoma, there are less than 850 members. Like me, each and every one of us has at least one issue, some, like me, many more, related to our treatments. What about the other 674,150 survivors not on our survivor page? Are they lucky enough, not to actually have any late developing issues? Or are they ignorant to what is going on beneath their skin, because they stopped seeing a doctor long ago, not being followed up for potential late developing side effects.

From 1995 until 2008, I always believed I had been one of those lucky 674,150, leading to a totally separate issue that I have dealt with frequently here on “Paul’s Heart,” survivor’s guilt. I knew so many other survivors, yet I was the only one who did not have to deal with any of the issues that they were dealing with. Though I was in remission as of 1989, I used the year 1995, because that is when I was jettisoned from my doctor, no longer needing to be followed up for my Hodgkin’s, and unaware of any potential for late side effects. My “healthy” condition had nothing to do with luck. I was surviving in spite of my ignorance. To be fair, no one told me of the possibilities that could be affecting me, until April of 2008. My ignorance would meet reality, in a hard way. I was actually dying. I was diagnosed with a fatal condition called a “widow maker,” a major blockage of a main artery going to the heart. At age 42, the last thing on my mind was heart disease. And at the time, being 18 years out from my cancer, anything related to that was also far from thought. Ignorance.

But for the first time in my survivorship, I was actually “lucky.” I was referred to two doctors at Memorial Sloan Kettering Cancer Center who had spent the majority of their careers, dedicated to survivorship issues of long term cancer survivors. I have documented many of my issues on this blog, all because I had doctors who knew what they were looking for and how to manage them.

But there are obviously too many who do not have this benefit. As I said, less then 850 of us are even aware of this issue. Hundreds of thousands likely go through their lives, scratching their heads at ailments that simply make no sense for someone of their age, conditioning, or health. Organizations such as Hodgkin’s International are finally providing education and support to bring awareness to the needs of Hodgkin’s survivors. There is still so much that needs to be done.

There is still a major concern for the small group of us, and that is having access to the care that understands our situation. Medicine is finally catching up with this need, in the form of survivorship clinics. But for those without access, survivors are at the mercy of primary care doctors or occasionally specialists. Trying to convince “non survivor doctors” that our issues are related to our treatments usually falls on deaf ears, because it is like the “bricklayer telling the engineer what to do.”

It is not just the average doctor that is hesitant, but even many in the survivorship realm. In my thick file of medical records, never once, has any mention ever been put in writing that my health issues are related to my treatments. BUT… every one of my appointments and emergency events, all occurred because of these late issues caused by my treatments. Scientifically, this has been proven. So, why is it not written in my records?

It has been put into my records now, “radiation-induced,” caused by damage from my radiation therapy 32 years ago. Now if only the rest of my fellow survivors could be as fortunate it would make caring for their needs so much easier. For my small group, we know we have the health issues, and most of us are being taught by our fellow survivors how to navigate around the world of medicine to get the help and care we need as our own advocates. It should not be this difficult. Medicine is taking too long to catch up to most of my fellow Hodgkin’s survivors, many in their 4th and 5th decades of survivorship.

I am no longer ignorant of the issues that were not looked for. And I am not lucky, being untouched by late developing side effects. But I am lucky, that I am able to have things taken care of by hands and minds that have learned to deal with our special needs, because they recognize what caused them. But I am not the only one. There are 674,150 others who need this help, who need this recognition, “treatment-induced side effects.”

In 30 years, I have seen the progress in the diagnosis and treatment of Hodgkin’s to see less toxic therapies used with similar or greater success. In 15 years, I have seen newer methods of dealing with our late side effect issues to be used, sparing the extreme risks. And I want to see in my next ten years, all cancer survivors getting the follow up care, and the recognition of the late side effects and their causes, so that once and for all, we can all have the quality of life best possible and deserve.