Closing Range

When Cure Becomes Curse

Hodgkin's never forgets or forgives its “survivors,” as is being increasingly realized as time from treatment rolls on

By Dave Skinner

A little while back, I wrote about a tiny little stroke I had, which wrecked my vision but left me otherwise fully functional.

Why? Well, after 10 expensive weeks of tests and literature research, I’m unhappily confident that stroke has roots going clear back to 1976, when I caught and was “cured” of Hodgkin’s lymphoma, the “teenage cancer.” 

Hodgkin’s lymphoma is not common. There are three cases per 100,000 in the United States each year, with about 35 cases per 100,000 in the larger population. My experience began underneath my train set. I dumped a nice glob of melted solder dead center on a knot peeking up from behind my collarbone. First, it was mononucleosis, but kept growing. Out it came for a biopsy. Cancer.

Away to Seattle for tests, then, thanks to family on Manhattan Island, treatment at New York University Medical Center, where I was zapped from cranium to crotch in two phases, upper and lower torso, 4,000 rads across 20 shots of 200 rads a pop. Lead shields were fitted to protect most (but critically not all) of my head (and brain), my lungs, and in the lower phase, my “jewels.” However, everything else was left wide open to the magic rays.

When it was all “over,” at 2:39 p.m., August 18, 1976, I had washboard abs from all the vomiting and was bloody from both ends. I swore I’d never go through anything like that ever again.

It took about a year before I felt normal, and another three years before my motor skills got out of the “clumsy” range. Finally, in 1980, I was told I was officially “in remission.”

“Remission” meant I would forever be quoted health-insurance premiums costing more than all other living expenses combined, without any coverage for what I was most concerned about, of course.

So, from then until the wee hours of March 2, I managed to stay the heck away from hospitals and the like, except for sporadic physicals that waved no red flags, ever. 

Thing is, Hodgkin’s (or more accurately, the fat doses of wide-field radiation required for treating the network of lymph nodes) never forgets or forgives its “survivors,” as is being increasingly realized as time from treatment rolls on. The cure is, increasingly, a curse.

One Netherlands Cancer Institute study from 2009, on those with Hodgkin’s lymphoma before age 41 between 1965 and 1987, studied relative risk or RR in terms of multiples of “normal.”

In general, survivors “experienced elevated risk of death from all causes other than HD.” How elevated? Try six times normal, for both other cancers and cardiovascular problems. Even better, for those treated prior to age 21 (I was 16), risk from second cancers and cardiovascular disease was “especially” high. How specially? Try 14.8 times normal for cancers and 13.6 for cardio problems, now specialized into “Radiation-associated cardiac disease” or RACD. 

And just in case you’re female, you should know “breast cancer is prevalent in lymphoma patients [radiated] at a young age.”

How about stroke risk? Depending on which study of several you pick, the added risk runs two to four times that of unradiated people, at least partly because radiation damage to the cardiovascular system manifests in atherosclerosis, or hardening of the arteries. Yep, my stroke was in the radiated area. I wasn’t surprised to read a doctor’s commentary about “overwhelming evidence that radiation therapy in Hodgkin’s disease is short-sighted.”

Bottom line now seems to be, Hodgkin’s or not, widely radiated people are short-lived. In the paper noted above, only 55 percent of “survivors” had made it 20 years post-treatment. I’ve gone 45 years, most of which, while not all great, were interesting as heck. But now, I have at least three tumors, a toasted heart valve, hard arteries in my brain, and at least one for-sure cancer, and I’m not yet done with diagnosis. On the bright side, I’m still cured of Hodgkin’s!

What’s next? For those few of you out there with heavy radiation treatment in your past, ignorance is bliss only so long. Get yourself checked out. As for me, I’m not quite ready to check out, so we’ll see. 

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