Paul's Heart

Life As A Dad, And A Survivor

We Don’t Call It That Anymore

I follow a lot of comedians, well, because I like to laugh and think I have a fairly well-rounded sense of humor. I do have my limits, and just move on when a line gets crossed. But a TikTok from comedienne Amber Joy Layne, actually left me scratching my head in wonder, more that it did have me laughing. Do not get me wrong, her punchlines were perfect. But as the saying goes, “it would be funny if it wasn’t true.” The subject of Layne’s bit, was the subject of referring to STD’s (sexually transmitted diseases) now as STI’s (sexually transmitted infections). Now usually during a standup routine, any reference to an STD would have been to the “how” or “when” it was acquired. The dialogue leaned towards the de-stigmatizing or lessening the severity of how bad or shameful one is supposed to be, if one gets an STD. As Shakespeare wrote, “a rose by any other name is still a rose.” So, no matter what you refer to it, it is still what it is, a disease. And it does nothing to increase prevention or treatment options. I guess, by referring to it as an “infection,” it makes it less embarrassing to deal with.

This TikTok triggered me however, in that something I was diagnosed with, at some point since my time, had become renamed. In November of 1988, I was diagnosed with Hodgkin’s Disease. And until the doctor followed up Hodgkin’s Disease with the word cancer, I had no idea that the two terms were even related. Regardless of the words “disease” or cancer, I was going to have to fight for my life using harsh treatments and methods. The results, regardless of what my Hodgkin’s is referred to as, I am a thirty-two year survivor.

But somewhere along the way, someone decided Hodgkin’s Disease needed to be renamed. Nearly 300 years ago, Thomas Hodgkin’s discovered the abnormality in the lymph system (though credit appears to be given nearly 200 years earlier to Marcello Malpighi in 1666 – credited to Dr. Ananya Mandal and her paper in Life Sciences Medical News). But in the year 2001, the WHO (World Health Organization, not the rock band), published that the preference was to refer to Hodgkin’s Disease, now as Hodgkin’s Lymphoma. Though I know a lot about Hodgkin’s Lymphoma, and a decent amount on cancer in general, the reason for the change is so way over my head that all I can offer from what I read and tried to understand, was that it had to deal with molecular mumbo jumbo. Yeah, the paper lost me after the word molecular.

But there you have it, there was a scientific breakthrough that led medicine to feel the need to change the name of a cancer that I and hundreds of thousands of others had been diagnosed with, from disease to lymphoma. Now, keep in mind, we already knew that Hodgkin’s (whatever you call it) was a cancer of the lymph system. So perhaps, for the lay people, using lymphoma helps non-patients understand what and where Hodgkin’s is. After all, breast, lung, and colon all speak for themselves. But Hodgkin’s, who knows.

I guess though, there may be an unintended distinction between those of us diagnosed with Hodgkin’s Disease versus Hodgkin’s Lymphoma, though both are the same thing. Those of us treated for the “disease” appear to have been treated with much more harsh, and many will agree, experimental therapies, that have left many survivors, like me, with late developing side effects from radiation and chemotherapy treatments. Those being diagnosed with “lymphoma” are more likely to be treated with the less toxic treatments. So, there is that.

So, was this name change really necessary? Or just for someone to get their name in a journal? Or has it really made a difference?

And then there is non-Hodgkin’s Lymphoma. Here you have a cancer, but instead of coming up with an original name, you just say it is “not” Hodgkin’s because it is a cancer of the lymph system, but it is not Hodgkin’s.

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