Paul's Heart

Life As A Dad, And A Survivor

Archive for the day “February 5, 2020”

You Are Cured – The “Myth” And The “Birth” Of The Long Term Survivor

“I am positive that we can get you into remission.  I don’t like to use the word ‘cured'”.

These were actually the words spoken to me by my oncologist when he had diagnosed me with Hodgkin’s Lymphoma.

As I have begun drafting my 30th Anniversary post, this is one of the conversations that had popped into my head.  I had thought that the whole idea of treating cancer, was to “cure” it.  Not just settle for putting it into remission, the technical term for making the cancer go away.

Cancer patients are often told of the magical “5 year” mark, which probably all of us equate to the term “cured.”  And we have every reason to feel this way.  After all, if the cancer has not come back after that time, would it not be logical, and fair, to say we have been “cured?”

Like I said, I am gathering my thoughts for hopefully the most inspiring post yet on “Paul’s Heart.”  “Cured” is a very powerful word.  In its simplest form, it means as a cancer patient, “we are done with it.”

I am fairly certain that the reluctance of my oncologist to say I was “cured” my have either been from a liability angle or perhaps did not want to be compared to an act of God, but what if, in hindsight, to be able to be “cured” required a lot more than just having no more traces of cancer cells?

From the very first appointment post treatment completion, we set our sights on the day that we never have to set foot in an oncologist’s office ever again, nor should we have to, being “cured”.  And unless you have had this experience, you cannot blame us.  And decades ago, most of us were given our release once we hit that five year mark.

But those of us that are long-in-the-tooth can attest to, decades ago, it was very rare to hear of anyone surviving cancer.  There was no social media to “ring the bell” when done with treatments.  You mainly only heard when people died.  This attitude continued well on into the end of the 20th century.  So, we rarely heard anyone beating cancer, but we also never heard of people living a long life after cancer.  And evidently, medicine did not either.

Turn on the television, and chances are you will see a commercial for some sort of drug.  And during that commercial, will come a long list of side effects.  These are known as short term side effects for the most part, that will either happen soon after you take them, or once the medicines have a chance to impact the ailment.  It is unusual that you will hear anything about the long term effects either because they have not been studied yet, or, and this is key, a certain side effect has not happened enough to be publicly documented with a warning.  (See the post I wrote about taking statin drugs).

For many cancer patients, this is exactly what happened to us.  We were all given information as to the short term effects of the treatments from nausea to hair loss and more.  But very few were aware that there would be long term issues, including medicine.  After all, remember that “5 year mark”, or the “cure”?  The fact is, there were no long term studies done back in the 30’s, 40’s, 50’s, 60’s, 70’s, 80’s, and not until the 90’s was the idea even approached about the possibility of late developing side effects from the extreme treatments received earlier.  In actuality, these long term survivors approached their doctors with symptoms that often case did not make sense for their age or current health status, and therefore really had nowhere to turn, and in many cases ignored.  Or, if they were “lucky” that someone might have an idea of what they were dealing with, hoping the doctor had the experience how to handle the issues.

For me personally, I stopped seeing my oncologist in 1995, five years after I received my final treatment.  In 2008, by dumb chance, my primary care doctor ordered a cardiac test for a symptom I had been experiencing for several months without complaining.  36 hours later I was on an operating table having my life saved with an emergency double bypass, caused by radiation damage for my Hodgkin’s.

Why was this not caught sooner?  Because, remember the “5 year mark?”  There was no long term studies, at least not popularly known at that time, that cumulative and progressive damage would occur from such high exposures as I experienced.

I could go on and on about this issue, and have done many other posts on it, so I will not.  My point is this.  In 2020, more doctors and oncologists are more aware of these late developing side effects.  More importantly, medicine has now realized that part of dealing with these side effects, is surveillance.  And if cancer patients are going to live longer than the five years, and the potential for these late effects is cumulative and progressive, then surveillance is necessary for the rest of the life of the cancer patient.

And if the idea of being “cured” of cancer is being done with it, meaning we just put it behind us forever, are we really cured if it is necessary to be watched for the rest of our lives, for what comes next, then are we really “cured?”

I am not saying this is a bad thing at all.  I am eternally grateful to be here thirty years later.  But because of long term cancer survivors like myself and so many others, medicine now knows that cancer survivors need to be followed up, forever.  And it is important that “newbies” understand this, that it is easier to deal with an issue that is just developing (determined from a baseline) before it gets too bad such as the “widow maker” I dealt with.  It is just as important to encourage the prognosis of remission, to emphasize the importance of surveillance for the rest of their lives.

Many of my fellow long term survivors, and I, feel as though we were guinea pigs with our treatments.  And perhaps we were.  And because of the issues we developed throughout our survivorship, we are feeling like guinea pigs again.  But the good news is, medicine is finally catching up.  Medicine knows what it means to survive cancer.  And doctors need to do their part to make sure patients are not mistakenly thinking it will be behind them.  This is not to say that you cannot enjoy life in remission.  By all means, I have done so.  But a cancer survivor must also be diligent.

Perhaps my oncologist was correct in not wanting to use the word “cure” but for a different reason.  For me, I still use the word remission, and feel I cannot use the word “cured” for the reasons I just mentioned.

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