April 18, 2026
An "adventure" in health care (American style), part 2[1]
Gary Engstrand
Prologue
I didn’t plan to write a “part 2” because I didn’t think there would be anything happening that I could make into an interesting read. Several friends asked me to do so, and as it turns out I can tell a few more stories. Unfortunately. So three days after the conclusion of “part 1,” I’ll start part 2. Not that the specific dates are of particular importance, even though I’ve put them in bold, but they demonstrate that Minnesota Urology and their colleagues in Minneapolis Radiation Oncology moved quickly after the PSMA scan.
It has occurred to me more than once, as this course of diagnoses and evaluations has unfolded, that it is based entirely on what I might call magical numbers. I have no symptoms; I feel today the same as I felt a year ago. I suspect, however, that those magical numbers are going to lead to medical interventions so that I will NOT feel the same as I did a year ago.
Last December a sophisticated machine looked at my blood and said a number was high (the PSA). Another sophisticated machine took a picture of part of my body that supposedly meant something (the MRI). Later, in March, yet another sophisticated machine produced another set of numbers indicating disease (the Gleason scores). And in April another machine confirmed the information from the first three machines (the PSMA PET scan). But for all these machines, I would have no idea I have any illness. I could be the anti-machine equivalent to anti-vaxxers and deny there’s anything wrong with me. I certainly have no evidence personally that there is!
A friend of mine who read chapter 1 echoed a sentiment that Sam expressed and that I shared. “Although I knew I most likely had cancer, when I read the word CANCER on the report, it nearly knocked me off my chair.” Yep. Who, me?
M Health Fairview has long been the health care provider I have used—and generally been happy with. But they disappointed me on the cancer treatment. The first they could get me in for the PSMA PET scan was April 20; the two clinics I am using got the scan done quickly and the treatment started equally quickly. Who knows how long it would have taken M Health to finally get things moving after April 20?
One thing I neglected to mention in part 1 was that Kathy was as worried as I was while we were in Florida (and still is, to the extent that I am). As I compose today (April 18), however, the stress levels are much lower. Kathy also went (goes) to almost all the appointments with me, which I want and very much appreciate. We discovered years ago that two heads are better than one at medical appointments; she asks questions that I forget or didn’t think to ask.
A Worrisome Sidetrack
I managed to create considerable stress and worry for myself. I have a long-time good friend and former U of MN colleague who was recruited away from the U to run a research center in Boston; I’ll call her Emily. She’s a distinguished scholar and researcher and the U was dumb to let her get away. She’s been dealing with cancer herself. Anyway, she connected me with a friend of hers whom I’ll call Ron, who’s done extraordinary research on prostate cancer treatments (because both he and his brother had prostate cancer).
Ron sent me a number of article citations and in several email messages vigorously advocated for brachytherapy in combination with external radiation rather than what my physicians were planning, only external radiation. (In short, brachytherapy consists of inserting radiation in the prostate, something the size of a grain of rice, whereas external radiation is what you’d expect, a machine that shoots beams at you.) This was not the treatment I was being prescribed and I began to wonder if my physicians were behind the times or something. This apparent discrepancy caused me considerable worry and stress for a couple of days. Back to being in Florida ☹
Ron also set me up for a video call with the head of UCLA brachytherapy, a unit that is the leader in the field.
I gave my three physicians the materials that Ron had provided about brachytherapy.
The Minnesota urologist sent me
a message:
“Generally brachytherapy has fallen out of favor, I don't see it used very often nowadays as external beam has evolved. With brachytherapy I worry that a high radiation dose near the bladder has higher likelihood of downstream side effects.”
The Minnesota radiation
oncologist called me and talked to me for 20 minutes; I’m paraphrasing from
memory:
He offered to slow down the treatment plan if I wished. (I said absolutely not.)
He trained at Mayo, which stopped using brachytherapy some time ago. He cited research (said he'd get me the citations) indicating that brachytherapy combined with external radiation did not offer better survival rates but did cause additional side effects.
Brachytherapy plus external radiation was the preferred approach in the past, but once they learned that they could safely use higher-dose external radiation, brachytherapy fell out of favor in the profession.
He encouraged me to get another opinion—the reason he offered to slow down the treatment plan—and said that *maybe* I could find someone who would do brachytherapy in combination with external radiation (i.e., he was skeptical anyone would do it). They do it only in rare cases now.
The Florida urologist also sent
me a message:
"I would not combine [external radiation] with brachytherapy. LOTS of problems. I try to have those patients find a new urologist because they're very difficult to manage."
Given these responses, I thanked Ron for his efforts on my behalf and declined the video with the UCLA guy:
My take on these opinions is that it's the reverse of sticking by an outdated procedure; they have used it in the past and dropped it when they believed they had a superior treatment option.
I am comfortable with the treatment schedule that my oncologist has set up and I'm impressed with the thoroughness and care embodied in their treatment.
I'm going to close out this exchange now. But I do want to express my appreciation for your messages and research. You made me examine the treatment more carefully and ask my doctors to explain why they have chosen the treatment they did. In the end, I'll stay with what they have prescribed, but I feel better about it as a result of your communications. I thank you for that.
Ron, however, was nothing if not dogged. He replied by asking about my hormone therapy and sent me three videos promoting brachytherapy—and suggested I send them to my physicians because they—the videos—"refute, with recent, real-world clinical science, everything they told you.” I found that response to be utterly tasteless and tacky after I told him I was signing off, I trusted my physicians, and comfortable with the treatment. Ron is not an MD; I’m going to take the word of a true believer versus the judgment of my three physicians? Nope.
I did not respond and I did not watch the videos because I’m not competent to judge medical evidence. When we first started exchanging messages, I thought he might be helpful; I concluded by thinking he’s a jerk.
My Boston friend Emily wrote a message, as part of my exchange with Ron, that was helpful by itself.
Here is what I have learned about cancer treatment. You will not piss anybody off by asking difficult relevant questions. It is your LIFE. (I have had to learn to check my “Minnesota Nice”: be a good quiet patient and say thank you to the nice man saving your life.) I have found that providers appreciate intelligent probing questions. I am certain my level of care got upgraded when I was able to cite literature and ask for a rationale. I think there is a * by my name—get ready to provide rationale and alternatives because she has read the literature. Providers are human and they are looking for an easy road but when they see you will ask, they have to pause and reconsider.
So read the literature if you’re able. Of course, she’s a biological scientist, so that’s easy for her to say!
Into the Process
I left off “part 1” with the PSMA PET scan (Prostate Specific Membrane Antigen, Positron Emission Tomography) No surprise, it found cancer. That was Wednesday, April 8. I was off for the weekend.
Monday, April 13 was a morning meeting with the nurse who does the drugs and afternoon with the radiation oncologist. Two appointments the same day. Lovely.
The nurse told me about the two drugs I’d be taking: stop the testosterone! It feeds the prostate cancer—even if the cancer has spread beyond the prostate (which it has but, as I understand it, only a little). One of the drugs has side effects that are addressed by prednisone, so I have to take a drug to deal with the effect of a drug. Something doesn’t seem quite right about that picture.
The last I knew, I would have to take these drugs for a couple of years. I managed to make it nearly 75 years without ever taking any prescription drugs on a long-term basis. I guess that record comes to an end. Phooey. (I’ve never objected to taking whatever drugs a physician recommends, I’ve just never taken anything more than a week or two, such as an antibiotic. My long-time internist at the University once told me I was an oddball: a 70-year-old man who took no prescription drugs. I took that as a badge of honor. Like I had anything to do with it.)
Before meeting with the nurse about drugs, I had to do another lab test. The PSA was higher than ever. I don’t know what that signals but it can’t be good. I intend to ask when I go in to start the radiation.
The radiation oncologist had just barely enough gray/silver hair for me to know he’d been practicing awhile. I didn’t want someone just out of their residency. As I noted earlier, he told me that he’d done his training at the Mayo Clinic, which I took as a good sign.
He will use higher doses of radiation on the cancer but said that he also directs a lower dose at the surrounding tissues that might be at risk, in case there are any microscopic cancer cells lurking there. Sounds good to me, although I tend to think of radiation in general as scary (see below * * *). I asked him what the probability of a recurrence of the cancer is after this round of treatment; he said about one-third—but added quickly that “we can treat that, too.” Oh goody, a 33% chance of having the opportunity to do this all over again in the future.
* * *
One study I read, in Harvard Health Publishing, from the Harvard Medical School, gave me a few minutes’ pause. It reported on a Canadian study done in 1998-2000 that initially reported (after about six years) that there was no increase in secondary cancers—in other organs—from either brachytherapy or surgery (the other treatment option for prostate cancer). The data were drawn from men aged 62-66. (It didn’t look at brachytherapy versus external radiation.) A follow-up study of the same men, in 2024, reached a different conclusion (my emphasis in yellow):
This time, rates of new cancers in the pelvis - including the bladder and rectum - were higher in the brachytherapy group. Specifically, 6.4% of brachytherapy-treated men had secondary malignancies at 15 years of follow-up, increasing to 9.8% after 20 years.
Results from the study "should be considered when treating men with localized prostate cancer who have a long life expectancy," the authors concluded.
"I do believe that this study reveals a dark truth about radiation for prostate cancer that has been long suspected," says Dr. Anthony Zietman, a professor of radiation oncology at Harvard Medical School and Massachusetts General Hospital, and a member of the advisory and editorial board for the Harvard Medical School Guide to Prostate Diseases. "As the decades pass after radiation therapy of any kind - brachytherapy or external beam - the risk for radiation-induced malignancies rises.
"These malignancies are usually in adjacent organs like the bladder and rectum, or within the prostate itself. They may be very curable, and thus the survival rates are the same for radiation or surgically treated patients, but there is little doubt that, for these patients, they represent a 'sting in the tail' long after the radiation has been given and forgotten.
Zietman doesn’t distinguish between brachytherapy and external radiation; it appears that his point is radiation has risks, period.
I decided not to worry about radiation-induced malignancies just because it appears there is a 9.8% chance of such a malignancy 20 years after treatment. While I hope to live a reasonably long life, in 20 years I’ll be 94. I’ll take the 9.8% chance at that point.
* * *
Continuing progress, next I had a “radiation planning meeting” on Wednesday, April 15 to set up the sessions. I get 26 days of radiation, every weekday from April 22 through May 28. They gave me an 8:15 a.m. slot every day. I told them I’d be happy to come in at 7:00 a.m. (the University clinics open then), but they don’t start until 8:00. Darn. I want to get this done and out of the way every day.
At the planning meeting I gained tattoos, for the first and only time in my life. I hate needles. I get all the vaccines and blood draws necessary but I close my eyes and look away when the needle goes in. I did so with my tattoos. I didn’t fully understand their use, but I have three dots at midriff level, one on my middle and one on each side; the radiology technician injected a small bit of ink, so they’re permanent. I think they triangulate with them.
One of the joys of these daily morning radiation treatments is that I have to come in with a full bladder and empty bowels. That will be an interesting challenge. I can drink the prescribed 16 ounces in the hour before coming in, but. . . . I am impressed, assuming my gastroenterological state is satisfactory for the purpose of scans, that they do a new scan every morning before they administer the radiation. I’m not sure why, but if they need it, fine by me. What’s a little more radiation among friends?
Part 3
will follow when there’s anything worth writing about.
[1] As
was true in part 1, all the names used here are pseudonyms. Except for
Kathy, where she appears.
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