"Adventures" in Health Care 4

 

May 19, 2026

An "adventure" in health care (American style), part 4

Gary Engstrand

 

Prologue

              A friend who’s been following this story, wrote to me, “I suppose that after the radiation treatments are over, your life will continue on more or less as before, and that the mental load of the experience will recede.” I certainly hope he’s right!

              I must also confess that I am unsure I would be composing this narrative if the prognosis were grim. Because it is not, and I can be optimistic about the outcome because my doctors have said cure is the goal, I can write somewhat cheerfully and even inject a small bit of humor—such as it is—from time to time.

              A couple of friends commented that I am getting excellent care. “It does sound though like you are able to get the very best people to work with” and “Sounds like you are in good hands.” Others have offered similar assurances. Am I? I don’t know. Who does? What patient, untrained in medical sciences, can really judge the competence of the physicians treating them? I have been impressed with the expertise that I perceive in the physicians (and nurses!) that I’m working with, but I could easily be misled. I *am* impressed that Dr. Hirtz, the oncologist, cites studies to support his treatment choices.

The Process Still has Stress

              And here I thought that once the radiation treatments and hormone therapy were under way, I’d get to the end of the process and be done. Once again, silly me.

              Every two weeks I have lab tests, through the end of July. The primary concern is liver and kidney function. I’m not clear which of the activities poses a potential threat, and maybe it’s more than one. I was aware before this all started that ibuprofen taken over the long term can cause damage, so I’m not thrilled about taking 1200 mg per day. Fortunately, that comes to an end when the radiation treatments are finished on May 29. In the meantime, however, I get to worry about collateral damage to organs. The worst outcome is damage such that I need a transplant, but I console myself by recognizing that thousands of men have gone through this process and not needed an organ transplant as a result. 

              I have had the first lab test and the numbers were fine. So so far my kidneys and liver are faring well. Phew.

              The second continuing stressor is the PSA tests. One comes next Friday. I asked Dr. Hirtz, “would you expect to see a drop in the PSA number at that point?” He would like to see a number below 10 (down from 27), which will be due almost entirely to the hormone therapy. The radiation takes several months to have an effect.

              I ask another question: What if the number is only 20 or 21? Then he would have to reconsider the treatment regimen. A number declining only slowly is problematic.

              So once again I have the opportunity to worry about numbers.

Questions to the Oncologist

              I don’t know how many people pepper their physicians with questions. I do.[i] I suppose the amount and intensity of questions varies directly with the seriousness of the affliction the physician is treating. Over the course of the last three weeks I asked about many things (not all of which I’ll bother recounting).

-- Did the delay in getting to treatment, between the December 30 PSA of 13 and the start of radiation on April 22 with a PSA of 27, allow the cancer to spread more than would have been the case if the treatment had begun a month or more earlier? Nothing to be done about it if so, but I was curious.

              It is likely there was some growth in the cancer over that time.

Sigh. I wondered about that. Had I been home, I suspect the diagnosis and treatment would have moved much more quickly.

-- I noticed on the Mayo website a caution about interaction effects between abiraterone and Flomax. Is that a concern? I recall a conversation I had with (my daughter) Krystin’s psychiatrist about a dozen or more years ago. Krystin had been on a number of drugs related to her diabetes and at one point ended up in the psychiatric ward of the hospital because she was hallucinating. I spoke with the psychiatrist and wondered whether this incident was provoked by drug interactions; Krystin was not the type who hallucinated or otherwise suffered from psychiatric issues. The psychiatrist agreed that it might have been the case; he changed her drugs and poof!, the hallucinations vanished. He also commented to the effect that “once you get beyond two drugs, maybe three, we have no idea what the interaction effects are, and anyone who says we do is lying.” I don’t think I’ve had any interaction effects so far, but I’m not thrilled with the idea of adding yet another drug (Flomax) to the pharmaceutical cocktail I already have to consume (prednisone, ibuprofen, Orgovyx, abiraterone, calcium supplement, multivitamin, simethicone).

There can be mild interaction between the two drugs; the first can block the action of the second, and it may be necessary to take a higher dose of the latter. But it is common for prostate cancer patients to be on both and a higher dose is not a problem.

-- I asked a couple of questions related to Metamucil and simethicone.

It’s your call, adjust them as you think needed.

-- I told Dr. Hirtz, the oncologist, that I had a dumb question (he interjected “there are no dumb questions”): Why not just one treatment to zap the cancer? Rather than 18 or 26 or 45?

The reason is that high enough doses to kill the cancer quickly would harm the surrounding cells and organs. Normal, non-cancer cells can recover day to day from the radiation; cancer cells cannot and accumulate damage over the course of treatment. The number of doses of radiation depends on the status of the disease; it varies by patient. As for Dr. Larson’s (in Florida) conclusion that he would order 45 treatments, it is possible to have a longer treatment period but there doesn’t seem to be any medical advantage to stretching out the treatments and they are just more of an annoyance for the patient. The longer treatment schedule was usual but the more modern approach is a shorter period.

Fine with me! Fewer is better, although the daily regimen of treatments is not a problem; they are 10 minutes away and I’m done and home by 8:45 a.m. except when the nurse and Dr. Hirtz want to see me, which is every Wednesday. I like those Wednesday sessions; I have an opportunity to ask all my questions!

-- I am glad the expectation is “cure.” If that prognosis should change, however, I want to know. I feel strongly about this; there’s a history in my family. My mother was diagnosed with cancer in early July (1989) and died at the end of September. It was determined that she had uterine cancer that had spread to the lymph system and lungs by the time it was diagnosed. I was privy to all her medical records and discussions, and I asked a couple of colleagues on the Medical School faculty for an evaluation. The gist of their reaction was “it’s weeks, not months.” Her doctors never told her that it was terminal (and, to be fair, neither she nor my father ever asked or pressed the issue, because I suspect they did not want to know). However, at one point they lied to her: she asked if she’d be able to attend an annual event with my father a year hence, and they said she would. I knew that was untrue and it made me angry that they lied. The situation made conversation difficult and there were likely last things my mother would have wanted to do and conversations to have, but those things never happened. I want to know so that I *can* take care of last things and have a few conversations. I hope, however, that this issue is entirely moot!

If I am going to die of prostate cancer, which is highly unlikely, it will be years in the future. There’s no need to prepare my will now.

I had already been assured (and reassured) that this cancer is not terminal, and I wasn’t asking for the third time. But I wanted to emphasize the point about being informed.

-- It is normal for patients to begin to feel fatigue as the radiation treatments progress. So I asked: There is fatigue and there is fatigue. Is the possible fatigue from radiation like one feels with the flu or a bad cold, when all you want to do is lie on a sofa the entire day? Or is it fatigue like not enough sleep or overdoing the gardening and one simply needs a nap?

              It is fatigue that a nap will usually take care of.

I liked that answer! And as of today, I’m no more fatigued than usual in life.

-- Am I immunocompromised due to either the radiation or the medications? I ask because we were planning to babysit our 15-month-old granddaughter one Sunday, but that Saturday she started coughing and had a runny nose, so both we and my son and DIL agreed it probably wasn’t a good idea for us to have her. I don’t want to be sick during this treatment (of course, I don’t want to be sick, period!).

I am very mildly immunocompromised. Not enough even to wear a mask in public, but I should avoid sick people.

-- I know a couple of guys, my vintage, at various stages of going through prostate cancer treatment. One of them (being treated at Mayo), is on shots for hormone therapy; a shot every six months. Is that the plan for me, once the radiation is done, or will I be on six pills for 18 months to 2 years?

The hormone shots are a less aggressive approach to cancer and are used with patients who have lower Gleason scores. Orgovyx is a newer drug that is highly effective and I will be on the two drugs for 18 months or more because he wants to treat the cancer aggressively.

Not what I wanted to hear but I’m all in favor of aggressive treatment, even if I do have to take 4 large pills every morning and then wait two hours to eat anything.

-- “Metastatic” is a frightening word. I have metastatic cancer, and it took me awhile to figure out (I believe correctly) that the term simply means a cancer has spread beyond its point of origin. When I first did some reading about prostate cancer, and treatments for metastatic cancer, I was considerably alarmed. I gather, however, that there are degrees of metastasis: a little, some, a lot, and that mine is probably “some” but not “a lot.” Is that right?

              That is correct.

-- I haven’t weighed recently but it seems like I’m eating more than usual. I’m slender enough that I can afford to gain (I lost about 15 pounds as a result of abdominal surgery in June 2024, was down to about 135 pounds, and never fully regained the weight). I am concerned, however, that any weight gain will go right to my middle ☹. Does/can one gain weight on this treatment regimen?

On average, patients gain about 10 pounds over the course of treatment. Keep exercising.

I need to talk to a trainer about the best exercises to minimize midriff expansion  ☹

-- A friend of mine, my age, related that his physician doesn’t recommend PSA tests for men over the age of 70. I observed that if I had not had regular PSA tests for many years as part of my annual physical, including last December, I would now be dying because I have no symptoms and would have no reason to raise any question with a physician. By the time I would realize there was something wrong, it would be too late; the cancer would have spread beyond the point where it could be successfully treated. It is only all those magic numbers and pictures that revealed the disease.

Neither I nor my colleagues in oncology would concur with that recommendation. You will have PSA tests for the rest of your life.

That’s hardly bothersome. I have regular blood panels for my annual physical that could include a PSA test; if I have to go in one additional time per year (i.e., PSA tests every six months) it would not be a big deal.

              A friend commented that it’s interesting that there is such reliance on the PSA test, generally regarded as among the more unreliable tests in the medical armamentarium. The National Cancer Institute has this to say about it: “False-positive test results are common with PSA screening. About 6%–7% of men have a false-positive PSA test on any given screening round, and only about 25% of men who have a biopsy due to an elevated PSA level are found to have prostate cancer.”

My assumption is that for a competent physician, the test is simply a warning sign and suggests further examination is required. My urologist in Florida commented that before the biopsy and MRI, he would not declare that I had cancer, and that’s one reason the first thing he did was order a second PSA test. When that came back even higher, then the process of further examination kicked in.

A Digression on Word Choice

I asked a writer friend “in your mind, does the word ‘journey’ imply volition, choice? Does one choose to go on a journey, or can a journey be involuntary?” He wrote back. “Yes, I think so, though perhaps not always a preferred choice, but yes, a choice at some level. Which is probably why the popular use of phrases like ‘my cancer journey’ ring somewhat false to my sensibilities. Is that what you think too?”

Another friend also wrote. “To me the use of the word ‘journey’ is a tiresome metaphor. My credit union wants to help me ‘blaze a trail’ on my ‘financial journey.’ Yuk. But at least that's more intentional than experiencing a disease and treatment that one did not choose to have.

Kathy came across this in The New York Times a couple of weeks ago, originally 5/16/24 but reprinted early this May. Excerpts:

When Did Everything Become a ‘Journey’?

Changing our hair, getting divorced, taking spa vacations — they’re not just things we do; they’re “journeys.” The quest for better health is the greatest journey of all.

“Journey” has decisively taken its place in American speech. The word holds an upbeat utility these days, signaling struggle without darkness or detail, and expressing — in the broadest possible way — an individual’s experience of travails over time.

It’s often related to physical or mental health, but it can really be about anything. . . . [Someone with a chronic disease] In the chronic disease community, she said, “journey” is a debated word. “It’s a way to romanticize ordinary or unpleasant experiences, like, ‘Oh, this is something special and magical.’” Not everyone appreciates this, she said.

“Journey” had fully entered medical speak by the 2010s. Many cancer patients recoiled from the “battle” language traditionally used by doctors, as well as by friends and relatives. In “Illness as Metaphor,” Susan Sontag had noted back in 1978 that “every physician and every attentive patient is familiar with, if perhaps inured to, this military terminology.” But now, opposition to the notion of disease as an enemy combatant reached a crescendo. To reflexively call an experience of cancer a battle created “winners” and “losers,” where death or long suffering represented a failure — of will, strength, determination, diet, behavior, or outlook — on the part of the patient. [Well, there is a winner and loser. . . .]

“Journey” seemed less judgmental, more neutral.

For some people, talking about cancer as a “journey” gave them a sense of control and camaraderie — buddies traveling the same path — but others used the term to convey their exhaustion. Having cancer “is like trying to drive a coach and horses uphill with no back wheels on the coach,” one man wrote. Patients used “journey” to describe just how passive they felt or how reluctant to bear the burden of their disease. Separately, patients have told Semino [who studies the use of words] how much they hate the word “journey,” saying it trivializes their experience, that it’s clichéd.

I agree with those patients. I’m not on a journey. I have been facing an ordeal, a trial, a stressful period in my life that I can’t wait to be over with.

              I also dislike the military analogy, in part because I have read too many obituaries with “courageous battle with cancer” as the description of how the person died and in part because the analogy is inapt, in my view. The way I think of it is that the physicians are administering treatments to kill the cancer cells. The right term to use here is “mass murder”: that’s the objective! Mass murder of errant cells. (The same descriptor could be used when taking an antibiotic to deal with a bacterial infection: mass murder of the invading alien bacteria!)

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[i] With one exception: When I arrived at the ER early on a Saturday morning in June 2024, after a night of intense stomach pain, was given dilaudid and had a CT scan, the ER physician returned to the room with a surgeon, who told me I needed surgery and needed it that day. I said “ok.” No questions. I asked many later, but not at the time.