Ask a Survivor — An After-School Special

A: I was actually asked this a while ago, but a horrible anecdote from my hometown hit me, recently, that you all need to know about. So; from a bioethics class in the late Pleistocene, I knew that, for excellent ethical and legal reasons, you can pull out of a clinical trial at any point, for any reason, even with the IV in your arm; HOWEVER, once you leave a trial, for whatever reason, YOU CAN NEVER GO BACK. The reasoning — as my half-baked, half-gone mind comprehends the situation is that it would be beyond monstrously unethical to pay people to have dangerous substances injected into them (that’s how you end up with “Doctor Mengele: Post-Capitalism Edition”), and, as a way to eliminate that risk (as well as discouraging unethical researchers from tampering with the results), you can’t opt out of a trial because you feel like hell, jet over to Switzerland, have a few pints of Keith Richard’s blood infused, and then just cruise back — if you feel badly enough to drop out of a trial; that’s a health and safety risk researchers and the public need to know about. So, I knew that if the researchers (whom I lovingly refer to as the Warlocks)(only chronically ill people find that funny) cut me from the trial, I’d be back on the street (so to speak), waiting for the next slot in another trial; or waiting for a new drug to pass the regulatory process — which can take up to three years — cruelly, longer than my projected life expectancy. So, I had every reason to stay in the trial, and, since it was piggy-backed/linked to Standard of Care at the time; I had to stay in chemoradiation, chemo, and all the rest to participate. I never lied to my physicians (you don’t want to do that), but I definitely downplayed my pain and suffering (both because I wanted my next fix, and because I know that medical professionals know that patients frequently use florid language to describe pain and suffering, they’re exaggerating)(the glaring irony is not lost upon me, trust me)(and it wasn’t until after I finished treatment I heard another survivor describe the sensation perfectly, “like my shoulder and arm are separating”). So, dropping out of treatment and/or foregoing or delaying treatment for anything other than imminent, life-threatening complications simply wasn’t an option. In retrospect, the fact that failure was a de facto death sentence (GBM survivors typically don’t last long on standard treatments), and I’m not ready to leave, was an odd luxury.

In graduate school for any biomedical program, there are a number of urban legends and perennial folk-tales handed down from faculty to students and students to other students (like Covid, or lice). In the Top 5 is the absolutely-true story of The Patient Who Refused Treatment. This one has actually leaked out into the general consciousness, thanks to the ubiquity of “alternative” medicine. In the tale, a patient is diagnosed with a disease which, if left untreated, is invariably fatal; however, the treatment for aforementioned disease is dangerous, unpleasant, inconvenient, and/or expensive. The common disease is a “curable” cancer, but it can apply to any number of conditions from autoimmune disorders to deadly infectious diseases (Lyme Disease treatments are no joke)(nor are the antibiotics used to treat tuberculosis)(but I digress). The patient initially refuses/foregoes treatment, lured away by the promise of easier, cheaper, less-painful treatments pedaled by… I dunno; ogres; there really aren’t a set of common boogey-men in the world of biology and medicine (I’m sure I’ll get tens of dozens of responses to correct me). Patient foregoes treatment, and, initially, feels great, because, in the early stages of disease, the treatment is much worse than the disease symptoms. However, the disease worsens, to the point where the signs and symptoms are far worse than any treatment; so the patient returns to the physician to get a treatment consult, and finds out, to their horror; that the disease has long since progressed past the point where medical treatment would even slow it down. I’ve heard enough versions coming from enough professors, researchers, physicians, my roommate’s girlfriend, etc. that I didn’t doubt there was some veracity to it. Believe me, I’m doubtful of that dubious, “convergent evolution of stories indicates an underlying truth” reasoning, but I’ve heard so many stories on Planet Cancer that are virtually identical that it makes me wonder about the fundamental truth of those allegedly-shared stories vs. social delusions, and, where was I?

Right, so, this week, I heard a story about a friend of my parents’ in my home town (you know there’s a hole in the space-time continuum when I actually become a character in a dramatic reinterpretation of my own snide deconsruction of an archetypal story)(BEOWULF HELP ME!), who had a “curable” cancer (some sort of blood cancer)(sorry to the Leukemia Kids; I don’t know much more than that — probably some form of Lymphoma, but this is all third-hand information garnered on Internet messaging apps and social media)(THE HIGHEST-RATED SOURCE OF ACCURATE INFORMATION)(Sorry, we’ll get back to the dubious, oft-repeated Welcome to Planet Cancer welcoming story shortly), went through a few rounds of treatment, got miserable, tried to forego treatment for a month or two, and was told that he was no longer a good candidate for standard care. And he died horribly ever after. No, he died a depressingly avoidable death by trying to take an unwarranted drug vacation (yes, those are things)(and, like so many aspects of the tales I tell; you’ll recognize it when you see it; and drug holidays are the greatest thing in a sick person’s life), and then, once he was feeling better, tried to get back on treatment. But, at this point, treatment wouldn’t make a difference, and, indeed, he died. I wish I could be more cheerful and less snide about it, but people tend to be complacent when they’re unaware of the stakes; and, the universal commonality amongst cancer survivors is that none of us thought, in a million years, it could happen to us. So, right now, before it happens to you, let me lay out the three likeliest outcomes of treatment: First, that treatment is completely ineffective and you succumb to the disease within a few years (even though this is the common glioblastoma tale pushed by most practitioners and statistics, I’ve only heard of a few cases like that). The second possibility is that life is a horrible, painful shit sandwich for a while (be forewarned, depending on your diagnosis and treatment; treatment can last 1–3 years), after which, you will begin to heal and recover; and the third; either you have a dangerous reaction to treatment, or back out of treatment, leaving only cancer cells that are now resistant to that treatment, and the disease eventually comes back and kills you sooner than expected (I’ve now heard more of those types of stories than I have the “unstoppable cancer juggernaut” ones).

I knew that taking another week off of horrible, hateful marizomib would make me feel far better and rested (again; shoulder separating from the arm. For 36 hours. And that wasn’t the worst side-effect). I couldn’t, because I knew the cancer would feel just as rested, and I didn’t want to give the tumor a leg up. My reasoning was, even bacterial cells seem to respond to chemical pain — “chemical pain” is the most-accurate summary of chemo I’ve ever experienced. Every second of neuralgia and neuropathy I enjoyed had to be experienced by the brain cancer. Pain turned to hatred for the disease; hatred lead to my flat-out refusal to forego even one infusion. Which lead to a new lease on life. So, what everyone needs to know going in is; treatment is about as awful as the LifeTime movies have prepped you for. It doesn’t accurately portray how cancer survival looks, but it can instill a level of fear and desperation that are accurate to the experience. It will be about as bad, before it’s all done, as your favorite Hallmark “Young mother dies of CANCER just as she realises the joys of motherhood” film. You will feel like she feels before the end; you might look as bad, too, if you don’t micromange your health (not that I’m going to advocate judging a book by its cover, but I noticed, if I “looked healthy,” and had normal blood pressure and pulse-ox readings, physicians were a little less-inclined to chase down that one time I had a high potassium reading on a urine sample). Of course, there’s no way to cheat the appearance of being healthy without actually being healthy (there are personal trainers who specialize in oncology patients, call them before you start treatment), you do have to put in the hours on that one (and you do have to monitor your health carefully). I have not been shot or given birth (obviously), but those are the only comparable physical incidents to cancer treatment that readily come to mind. I have experienced a variety of second-degree burns in a variety of sizes (it’s a long story); I’ve had three neurosurgeries (an even longer story), all of them pale compared to how misery-inducing chemoradiation is (again, if you have given birth and undergone cancer treatment, I’d love to know how the two stack up)(I bring up my burning experience because it’s the closest point of reference healthy people have for wide-spread neuralgia; imagine if the left side of your body is on fire, and you start to grasp the sort of pain you can expect with infusions). And, yeah, people can die from side effects and complications of treatment — that pales compared to the folks I’ve heard of dying from going off treatment, however.

The moral of the story: as truly horrible and terrifying as cancer treatments are; they beat the alternatives, hands-down. And, even though you can always discontinue treatment when things get hairy; continuing treatment isn’t always an option, so it’s a safer gamble to continue treatment under medical supervision than to bet that you’ll feel up to it next week.




Science journalist, cancer survivor, biomedical consultant, the “Wednesday Addams of travel writers.”

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Patrick Koske-McBride

Patrick Koske-McBride

Science journalist, cancer survivor, biomedical consultant, the “Wednesday Addams of travel writers.”

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