April 13, 2026
An "adventure" in health care (American style)[1]
(Retroactively subtitled part 1[2])
Gary Engstrand
Perhaps 25 years ago I was sitting in a University of Minnesota committee meeting that included two members of the University’s Medical School, one of them an oncologist. Before the meeting began, we were chatting about a colleague who had recently died of cancer in his 50s. The oncologist commented that apart from the obvious causes, such as smoking or working with asbestos, “we don’t know who’s going to get cancer. It’s a crap shoot.” Those may not have been his exact words, but it’s a very close paraphrase, and I know he used the term “crap shoot.”
I don’t know if that situation is still true or if understanding the causes of some cancers is better known now than it was then. I also suspect that had our conversation gone on for another couple of minutes or more, he would have added that genetics likely plays a factor.
I serve as an example of the crap shoot. To my knowledge, there is no genetic factor involved.
A Number I Did Not Like
Last December 30, at my annual physical that included the usual blood panel, my PSA was elevated. I am sure that almost all males my age (and their spouses if they have one) know that a high PSA (Prostate Specific Antigen) signals the possibility of prostate cancer. Yuck.
Of course I told my friend Sam. “Crap. I had my annual physical yesterday and they did the usual blood panel. My PSA antigen test came back elevated. I am not happy.” Sam agreed—”Yes, crap”—and suggested we have a conversation. I had an hour-long conversation with him about his experience of the entire procedure, from beginning to end. He’s nearly five years out and the surgeon says he’s probably cured. A word my friend wanted to hear.
I knew then that the next few weeks in Florida would not be psychologically relaxing. I didn’t know how right I was.
The Struggle for a Diagnosis
Since Kathy and I were leaving in early January for three months in Florida, I went on the web and found a urologist in Naples. Speaking of crap shoots: I had no contacts and no one who could recommend anyone, so what to do? I looked at the extent to which the clinic appeared to be using the most advanced approaches to treatment and I looked at the training of one of the urologists, Dr. Larson. He received his MD at Northwestern University Medical School, which is certainly a distinguished institution of higher education, so I made an appointment with him. I liked the guy a lot and he sure seemed to know his business. That said, I—like most people—have no way to assess whether a physician is good at their specialty, but Dr. Larson came across as highly credible, experienced, and knowledgeable.
I wrote to Sam after we arrived in Naples. “Fortunately, I’m not thinking about the prostate issue at all, except to note that I’m not. On the other hand, I wonder if I’m more morbid than others. As we left our townhouse, I wondered if I’d ever see it again. I wonder if others have this same thought.”
My brother commented, apropos of medical conditions, that “the uncertainty and waiting is difficult. It really puts everything on hold and kind of grinds on you.” I can attest to the accuracy of his observation. I couldn’t see Dr. Larson (or anyone else at that clinic) until January 19. As I expected, he ordered a PSA retest as well as an MRI. The PSA test they could do in his clinic, not so the MRI. The wonderful health care system of Florida, or at least that system, did not easily deliver on the MRI, which had to be performed by a separate imaging organization. I called them on January 20 to make an appointment.
I perforce had a break from dwelling on this. My son Elliott, his wife Martha, and their almost-one-year-old daughter Svea joined us in Naples for the last week in January. One does not spend a lot of time thinking about medical matters when one has a conversational son and daughter-in-law and a very active one-year-old running all over.
The MRI was scheduled for Friday, February 6. While Kathy and I were having lunch in Naples on the Wednesday before the appointment, I received a call from the imaging outfit that they were cancelling my appointment because they had not received prior authorization from my health insurance provider, Blue Cross/Blue Shield of Minnesota (BC/BS). So much for enjoying my lunch.
Part of the afternoon and the next morning I was on the phone, repeatedly. What was puzzling and dismaying and frustrating was that BC/BS has not typically required prior authorization and, when it has, it was granted without question. I’ve never had a claim denied nor have I ever been told that I had to wait on prior authorization. I don’t know how other people deal with health insurance, but I just go to the doctor or get a shot or do whatever without contacting BC/BS and whatever my mission is gets accomplished without to do. So this was a novel and unwelcome development.
It quickly became clear that BC/BS was not the villain in this show; they told me they’d only received the request that morning! I talked to staff at the imaging outfit (several times); they had no explanation of why they had waited two weeks to seek prior authorization. Several staff at BC/BS explained that they normally take about 10 days for that kind of request but agreed to hurry this one up. Not in time for the February 6 appointment, but they did approve it so I could have the MRI on February 12—the day I was supposed to see Dr. Larson again to review the PSA and MRI results. The imaging outfit had screwed up.
The most accurate term to describe my state of mind that Thursday morning was “pissed.”
So more stress and more waiting.
After the snafu on the MRI, I was still waiting for the PSA retest. I told Sam that “in a way, the PSA test is sort of irrelevant. I assume the urologist will want the MRI in any case; I certainly will insist on it.” I received the PSA number on the weekend: Even higher than in December. Ugh.
I recalled a quote that reflected my thinking. I told Sam that “even though it’s not apropos of a likely prostate cancer diagnosis, I still can’t help thinking of Samuel Johnson’s (1777) quip. ‘Depend upon it, Sir, when a man knows he is to be hanged in a fortnight, it concentrates his mind wonderfully.’” I also noted that the Cleveland Clinic (one of my trusted sources on medical issues) says a PSA over 10 means a greater than 50% chance that there’s cancer. Both of mine were over 10. The one reassuring datum was that if a PSA is over 200, it means the cancer has probably metastasized. I was nowhere near three digits, much less 200.
Sam observed that “Yup, the Cleveland Clinic is probably right—those PSA scores point to a “likely” cancer diagnosis.”“
He tried to be reassuring. “Let’s start with the word “likely.” I know of at least two friends who got PSA readings like yours that turned out to not be cancer. They are both only on some medication now and periodic monitoring. In my own experience, my Gleason scores from the biopsy were deemed “likely” to have had the cancer metastasized. It hadn’t. So, as it stands, you don’t have cancer. Samuel Johnson’s guy did focus, but his appointment with the hangman was more than likely.” (Cleveland Clinic: “Gleason scores are a grading system for prostate cancer. Medical pathologists set Gleason scores after studying tissue samples under a microscope. Gleason scores range from 6 (low-grade cancer) to 10 (high-grade cancer). Low grade prostate cancer grows more slowly than high-grade cancer and is less likely to spread (metastasize).”)
Sam made an excellent point, one I’ve
quoted him on several times since. “CANCER is the scariest word in our medical
lexicon. When I first was diagnosed, I couldn’t believe it. Cancer? Me? I couldn’t relate. I had had
plenty of friends with a cancer, and a couple of deaths, but I couldn’t
personalize it. Sort of embarrassing, actually, who did I think I was? Extremely common set of diseases. (I told him
“You got that right. My sentiments exactly. Everybody else but not me.”)
“The same Cleveland Clinic article
would also tell you that prostate cancer is highly treatable with very high
positive outcomes. You know that, so don’t just read the PSA part.
“Back to step by step. MRI. Back to urologist. Possibly biopsy. Back to urologist for opinion. Second opinion. Each step of the way, for me, I learned more and it normalized more.”
I did tell Sam that I had a minor amusing quibble. I agreed that cancer is “the scariest word in our medical lexicon.” For all people of all ages. I commented that “for our age cohort, I would say ‘dementia’ is equally scary. Maybe that’s not amusing.”
Much to my surprise, both BC/BS and the radiology outfit came through; they got me in on the Thursday the 12th. That was very fast for BC/BS, I learned. They normally take 10 working days for an authorization like that; in this case they received it on the 4th and approved it on the 11th. I wondered if my sob story to at least a couple of the BC/BS people had any effect: I told them I know this was just routine business for them but for me it was a potential cancer diagnosis and a big deal. They were all sympathetic; maybe they moved things along.
The downside of this rush was that the only opening in one of their clinics was in Fort Myers, an hour away, rather than the clinic in Naples that was 10 minutes away—where my original appointment was supposed to be. But of course I took the appointment without hesitation. Driving from Naples to Fort Myers, however, is no fun.
I then notified Dr. Larson’s nurse and asked if they’d be able to obtain the MRI results by the following Monday afternoon, when I was to see Dr. Larson again. She thought they could but would call me if they couldn’t. Interesting, because when I asked earlier how long it took them to get the MRI results, she told me 3-7 days.
Both Kathy and I were puzzled by that delay in delivery. We know nothing about MRI technology, but it seemed to us that in this age of advanced technology it should be possible to transmit the images with a few keystrokes. Even if the MRI images contain gigabytes of data—which I can imagine they do—the technology has been around long enough that you’d think they would have also developed a way to send it quickly to physicians.
Why, I asked Sam, is it that I’m more depressed now that the MRI is scheduled than I was up to now? As always, he was a counsel of calm. “One step at a time. It is good news that your advocacy got a timely MRI. Someone in the chain realized that tests cause anxiety instead of just random scheduling. My experience is that MRIs and all other tests are available within the hour. In Minnesota, as you know, the law says they have to be posted as soon as received. Doctors hate that, because too many patients see the test immediately and turn to Google before the doctors have had a chance to interpret/spin the results. Whatever. It will certainly be available to the doctor by your Monday appointment.”
Sam wrote that “it is reasonable to be anxious about the result—it is likely to be unfavorable. But it is just one step in the process, and the more steps you take the more you will feel like you are owning the process, as opposed to it being out of control. Most likely result is that a biopsy is next, but what do I know? At any point the findings can be favorable.”
Sam was wrong about how quickly the MRI would be available. At my Thursday MRI session, the tech at the radiology clinic said the results would be available to my physician in the middle of next week. I told her I had a Monday appointment. She said “there is no way.” I told Dr. Larson this in a message; within moments I had a message from his nurse moving the appointment to Thursday. It wasn’t a huge delay, a few days, but still more waiting. I just wanted this to move along quickly so I knew what’s going on and where things were going.
I commented to Sam that weekend that “my attitude about going to a fitness club has taken a downturn; when I figuratively face Johnson’s hangman in a fortnight, staying fit doesn’t matter. Of course I know that the odds are very, very small that I actually face the hangman; far more likely is surgery, a catheter, and general annoyance following surgery. But the thought about the hangman reflects my frame of mind at the moment.”
Sam was mildly annoyed. “You can stop with the Johnson’s hangman comments. I like excuses for not exercising as much as anyone, but that doesn’t let you off the hook. On my prostate journey I don’t think I was ever really scared about dying—more just surprised (Me? Cancer?). I think you are in that stage, where the newness/surprise are prevalent. The more you get into it, you will properly intellectualize the risks and danger, which aren’t very high.”
Along the way about this time I told Sam of what seem like odd afflictions of a good friend and reminded him of my own odd ones (loss of balance in one ear, abdomen all twisted around). He offered a poignant response. “I’m afraid the larger takeaway is that we are all dying. In our age group we all face periodic issues, some significant, some minor. We have a giant, free, very competent health care system (if you are over 65) that is fighting hard to delay our demise. They and we are all going to lose, which is a little sobering. The lesson is the same—and we have known it forever—to try to maximize our healthy time. I do think that our demise is not linear; there will be times, maybe years, when we are fine.”
Also along the way about this time I had a comment from another quarter. One of our long-time good friends is a retired medical school bioethicist; her husband, also a friend, is a retired MD. My bioethicist friend had asked me to keep her posted on events, so I did. I wrote to her that “all of these afflictions remain only potential, at this point, even the cancer. But I reflected that 100 years ago, or maybe even 50 years ago, these wouldn’t have been diagnosed and one just died. Instead I face the pleasant prospect (?) of extended interactions with the medical establishment (no offense to your spouse🙂).” She wrote back. “It is amazing how quickly our lives change based on even one sentence of information. And we are fortunate to live in these times when there are possible treatments and remedies.” Not even a sentence; one number did it (the elevated PSA).
When I finally got in to see him, Dr. Larson reviewed the MRI result, which showed a “high probability” of cancer. So now he prescribed a biopsy; only that will actually determine whether or not cancer is present. First he needed a pre-op exam, which I thought odd, but since he would be giving me sedation, they had to be sure I’d survive the sedation. No matter that I’d been sedated in June 2024, August 2024, and April 2025 and did just fine.
I failed the pre-op. Part of it was a heart test. I call it that because I’ve always heard it referred to as an EKG, but a cardiologist friend and the Mayo Clinic both refer to it as an ECG. “An electrocardiogram (ECG or EKG) is a quick test to check the heartbeat. It records the electrical signals in the heart. Test results can help diagnose heart attacks and irregular heartbeats, called arrhythmias. ECG machines can be found in medical offices, hospitals, operating rooms and ambulances. Some personal devices, such as smartwatches, can do simple ECGs.” Given the term, I suppose ECG makes more sense.
Anyway, the Physician’s Assistant (PA) who did the pre-op said no to the biopsy until I saw a cardiologist. My ECG was “abnormal.” This was really worrisome. Everything I’ve heard (from several friends) and read is that prostate cancer is almost always readily and successfully treatable. Heart problems, however, can be much more serious, and the prostate issue faded into the background in light of the ECG.
A long-time friend and former colleague at the University was a cardiologist. I sent him an email with the ECG and asked his opinion. He wrote back: “The cardiogram is abnormal and the urologist made the right decision. Are you feeling OK? Any symptoms: chest pain, sweating, vomiting, shortness of breath? You should get a follow-up sooner rather than later even if you feel OK.” Great. Fortunately, I had none of those symptoms, but I was still more worried. My friend did urge a second ECG because they aren’t always administered correctly.
I was sufficiently alarmed by my friend’s comments that I wrote again. “I’m almost sorry I talked to you. I was hoping the PA was being overly cautious in referring me to the cardiologist, and that he would say I’m fine, go ahead with the biopsy. Your comments make it pretty clear that he’s not going to do that and will likely order cardio tests. My question now: Am I a walking time bomb, ready to keel over at any minute from cardiac failure of some kind?” My friend reassured me. “You are not a walking time bomb. I am just being conservative until you see the cardiologist. Relax.”
Sure. Relax. In some other universe.
I couldn’t get in to see the cardiologist for two weeks. My bioethicist friend asked “when is your cardiology appointment? Hopefully soon . . . just for the reassurance!” I didn’t have one yet; “The session with the PA was yesterday afternoon (Friday), so I have to wait until Monday to try for an appointment. I’ll be calling them at 8:00. . . .” My friend was sympathetic. “I know how this weekend angst is.”
She also commented along a line echoed by others: “A reminder: the medical care in MN is much better than in Florida. . . . So go with what your docs up north say and advise!” I was seriously wondering if we should leave Naples much earlier than planned so I could start with medical care in Minnesota. If I hadn’t liked Dr. Larson as much as I did, I think we might have gone home.
But more waiting and more stress.
When I finally do see the cardiologist—we’re now up to March 4—he indeed ordered a second ECG. The result was the same, so no mistake. But he waved the result off as no problem and I’m cleared for the biopsy. (He was one of the best physicians I’ve encountered in terms of “bedside manner.” I wished I could have him for every medical problem that arose.)
The cardiologist said the ECG suggested a slow electrical conduit in one part of my heart but that it was nothing he’d worry about. He said that some people just *have* to know what’s going on while others basically say “whatever” and get on with their lives. Any issue would need to be diagnosed with a heart MRI, which he said is a specialized procedure. He did not require any additional cardiac testing, thank goodness—I’d been fretting about the likelihood I’d have to go through stress tests and heaven knows what else. I think one factor that decided him on clearing me for the biopsy was that I am on the treadmill about 9 times per week at a fast walking pace and a gradient and do other exercises and have no symptoms of any cardiac issues.
Besides “abnormal,” there was language in the ECG printout about “acute myocardial infarction.” Something else that had been worrying me. The cardiologist said that has a high rate of false positives and given my exercises and lack of any symptoms, he dismissed it. Glad to know.
So, there had been two weeks of unnecessary waiting. I was startled, however, at my reaction to the cardiologist’s diagnosis. I had been so worried about a cardiac problem that I no longer cared much about the prostate issue. I wrote to Sam: “My frame of mind about all this has changed considerably. After the worry about potential cardiac problems, the prostate issue faded to something minor. I’m probably not going to worry overmuch about the biopsy. I’m going in assuming it’s cancer and I’ll need to be treated when we get back to MN—and that no longer worries me too much, given the success rate of treatment. I’m so relieved that I’m not at risk of keeling over from a heart attack that other matters seemed less important.”
So now I’m up to March 11 for the biopsy—with the review and consultation on it scheduled for March 31. I told Dr. Larson’s scheduler that that date made me a little nervous because our flight back to Minnesota was April 1 and two out of the last three years we’ve been in Florida we’ve had to move our flight home a day or two earlier because of bad weather in MN.
Sam was peeved. “Frustrating on the biopsy. 20 days until you learn the result? I distinctly remember my results showed up in MyChart before I got home from the biopsy. That was followed by the urologist’s online analysis the next day. I don’t think the problem with the 31st is the unlikely possibility of a flight issue, it’s the three weeks that you get to stew with the uncertainty.” He repeated his earlier observation. “Maybe you can get them to release the results to you. Doctors don’t like that but they shouldn’t like the anxiety that their inefficient system causes, either.” They did not release the results and he was right about the stewing.
Three more weeks of waiting.
The Biopsy Story
Silly me. I had the vague impression that a prostate biopsy would mean a trip to the clinic, a nurse or urologist would poke a needle in a few times to get samples, and I’d be on my merry way. Boy, was that impression wrong.
My first inkling that this procedure involved more than a quick clinic visit was when the urologist told me it would take place in the hospital, not the clinic. The second inkling was when he told me I’d be sedated and would feel and remember nothing. (That I would be sedated and feel nothing was actually welcome; I have a friend who had a biopsy a few years ago without sedation and he told me it was extremely painful. I’m always glad to avoid pain.)
The final disabuse of the impression came with the prep instructions I received a week before the biopsy: no multivitamins for the week before; no alcohol three days before; antibiotics the day before, day of, and day after; an enema the evening before and the morning of; a shower with Dial soap the evening before and the morning of; and no food or liquids after midnight the day of. Yikes. With a scheduled 1:30 biopsy, it was going to be a long thirsty and hungry morning.
Now I’m sort of expecting what’s coming. First thing at the hospital: off with all the clothes and on with a lovely hospital gown. Then onto a mobile hospital bed, covered with a warm blanket, and an attending (friendly and chatty) nurse who asks me dozens of questions, has paperwork (that’s actually all on an iPad), and hooks me up to an IV, first to be used for an additional antibiotic.
Next a parade of medical folks: the anesthesiologist, who spends about 15 minutes with me and wants to know about every surgery I’ve ever had, back to eye surgery when I was about 10 years old; the urologist, who stops in to tell me what’s going to happen; and then the urology nurse. He introduces himself as Tom, shakes my hand, and says something like “I’ll be taking care of you, bro.” He was white. (Perhaps erroneously, I have assumed that “bro” is a term of attachment or bonding used primarily by Black guys.) I ask him about the sedation versus general anesthetic; he says it’s sedation, which means I continue breathing on my own. “But don’t worry, bro, I’ll be keeping an eye on all the numbers [on the machines] to make sure you’re doing ok.” Glad to know that!
As I and my bed are being wheeled to the operating room, I mention that dilaudid had been a godsend when I’d had abdominal surgery and I’d been surprised that they’d given it to me whenever I asked, with no apparent worry about addiction. Tom says that “for hospitals, the elimination of pain outweighs the risk of addiction.” Fortunately, that wasn’t an issue today.
Now I’m in what appears to be a high-tech and very large operating room with four nurses standing about performing various tasks that I knew nothing about. I’m told to roll over onto my side, bare backside exposed. One of the nurses started to apologize; I told her not to worry, that I knew that one has neither dignity nor modesty when a hospital patient. The nurses all laughed.
Tom the anesthesiology nurse puts the oxygen tube on my chest and rests the two little extensions in my nose so I breathe the sedative. He tells me that I’ll start to feel sleepy. That assurance was inaccurate; within about two seconds I was out like a light.
The next thing I know I’m in the recovery room and feel fine. I guess I was only under for a short period, maybe 15-20 minutes, but it could have been 15 hours for all I knew. More paperwork, a little cranberry juice, post-op instructions, and finally, almost exactly three hours after entering the hospital, I exited, in a wheelchair pushed by a nurse, and was indeed on my merry way. With Kathy driving.
What a production just to get a few prostate cells for analysis.
The hospital billed BC/BS $62,000. BC/BS paid $3,300. I told my cardiologist friend about these numbers. “And that is how they turned a $500 procedure into a $5,000 procedure. I suspect this was because they saw the ECG. And you looked litigious and it is Florida.” He looked at the billing. “Medical billing is deliberately opaque. Hospitals cost more generally for the same procedure.” A couple of friends of mine, my vintage, reported that they had had the biopsy performed in a clinic.
Who knows if my procedure was a way for the hospital to make money (although if it was, they didn’t make much on it, and I doubt that was Dr. Larson’s motivation). In fact, I will give him credit for the decision: a couple of those friends I mentioned had also told me that the biopsy was one of the most painful procedures they’d ever experienced. One said it was like having a staple gun pressed against your skin and triggered—15 times. I, on the other hand, felt nothing and felt fine. So to the extent I avoided that pain, I am grateful for the hospital setting!
Onward After the Biopsy
March 31 finally comes. I write to my friend: “Even though I know what will happen today, I’m still stressed this morning, after not thinking much about the appointment until maybe yesterday. I know I’m stressed because I’m not hungry, which always happens to me when stressed.”
Later in the day I report back. “It is cancer. [The Gleason scores were] a 9 on ten of twelve tests. Dr. Larson advised a PSMA (Prostate Specific Membrane Antigen) PET scan (which, he said, no insurance has ever paid for that he knew of, but it’s superior to the bone scan with CT scan). He also said that if I were continuing as his patient, he would prescribe radiation for 9 weeks, five days per week, plus hormone therapy for probably three years. He emphasized getting treated soon. Yikes! 45 days of radiation?
My bioethicist friend told her retired-MD-husband about the 9 weeks/5 days per week radiation advice; his response was “with that much radiation, they’re going for a cure.” Fine with me. And made me like Dr. Larson even more.
In line with recommending the PSMA scan, Dr. Larson opted for radiation over surgery. Why? Because the PSMA is called for when there is suspicion that the cancer has spread beyond the prostate. I’m thrilled about that, not. He said that surgery wouldn’t necessarily remove all the cancer, if it has spread, but radiation could.
Sam commented. “Well, shit. That’s dismal. Let’s start with the only positive spin I can place. We need to remind ourselves that prostate cancer is the slowest growing cancer with the best longevity outcomes. It benefits from tons of research and improvements in diagnosis and treatment. It is often said (lamely, I think) that you won’t die from prostate cancer. It is the cancer you would choose if you could. OK, that’s the best I can do.”
Sam continued. “On the radiation vs surgery question, there may be a clear choice that other urologists would agree on. Maybe it is something about you, or your biopsy results, or something else. Or maybe it is just Larson’s preferences generally. I do recall that the radiation regimen was about like what was suggested for you: many weeks of daily treatments, although I thought I recall that they were brief (5 minutes?) and painless. I guess I’d feel better if at least one other urologist, maybe two more, agree that is the best course. Sorry, not a good day.”
I found it interesting that Dr. Larson made an appointment with me on January 11, 2027, when we presumably will return to Florida. I couldn’t decide if he was just being encouraging, implying that I’d be back in a year and that I wouldn’t kick the bucket during the next nine months, or if he really expected me back as a patient.
In the meantime, I made a urology appointment in Minnesota for April 14, the first I could get in. I went to Minnesota Urology because Sam recommended it. But more waiting.
I thought the scan question would be interesting. The PSMA PET scan is more sensitive in identifying cancer than a bone scan w/CT scan, but if there was no insurance coverage, the potential cost could be a worry. Kathy thought I should do it anyway and we pay for it. Sam commented that if it were $1,000, he’d do it; if it were $25,000, he probably wouldn’t, or at least not before talking with a Minnesota urologist.
The day after we got back from Florida, in a morbid moment I wrote to Sam that “what I’m thinking is that there’s a non-zero chance I won’t be here next year—despite my Florida urologist making an appointment with me in January next year. I hope the odds of that are small, but I would be naive to think they are zero.” Sam downplayed my morbidity. “I’m not really buying your ‘non-zero’ train of thought. While technically true, there is also a non-zero chance that you’ll get in a car accident on Monday. If I had to bet on the likelihood of your death by prostate cancer in 2026 and the car accident, I’d choose the latter.”
He added: “What you are surely entitled to is to feel rotten about the whole situation.” He reiterated his previous point. “For me, one of the most prevalent emotions was surprise. Cancer? Me? I submit that your current situation has a lot to do with uncertainty and lack of control. In my prostate journey I had a lot of doctors’ appointments and a lot of tests. While that annoyed me, each time I gathered more information and felt more in control. I suppose the passage of time also helped in that regard.”
I corrected myself: “I realized after I sent the message exactly what you wrote. Of course there’s the car accident, but you know I meant ‘non-zero chance I won’t be here next year because of cancer.’ I’d agree with you without hesitation but for the fact that Dr. Larson advises the PSMA PET scan, which, as I read about it, is advised when there is suspicion the cancer has spread beyond the prostate. So there’s worry it’s spread to (e.g., as he mentioned) bone or a lymph node. That’s what’s scares the heck out of me. I’m not sure those are quite so easily treatable.”
“More than anything, I dislike the waiting.”
After I’d returned to Minnesota and made the April 14 appointment, I asked Dr. Larson if that was waiting too long, and if I should move more quickly. Even though I was no longer his patient, he did write back and said April 14 was fine. Much of my concern arose from the fact that he had described it as serious, not one to just watch; what I didn’t know is how fast a serious cancer moves/spreads, and that’s what’s made me alarmed. I inferred from his OK of April 14 that “serious” did not mean it’s spreading so quickly that treatment is urgently needed.
I told Sam that “unfortunately, this is going to be on my mind far too much. Prostate cancer alone doesn’t worry me because, as we know, it’s eminently treatable. The chance that it may have spread worries me a lot.”
One complication in all this, my own fault this time, is that I had decided to change primary care providers (PCP, ugh). An odd side story: I’d had a primary care physician that I’d liked at an M Health Fairview clinic close to our townhouse. I went to make the appointment for my physical in December and was told that my physician was no longer at the clinic. So I took an appointment with one of their other docs, no idea who he was. The odd part: my previous physician simply disappeared. No one at the clinic knows where he went or why he left.
The physician I saw for the physical was OK; I’m sure he’s competent. But I’d received advice from somewhere—now I don’t remember from whom—that if possible, it’s a good idea for spouses to have the same primary care provider. Kathy liked hers, and he was reasonably close to where we lived, so (while still in Florida) I contacted the clinic and asked to be added as a new patient and made an appointment for April 3, two days after we returned from Florida. It turns out that he’s a PA, not an MD, but Kathy found him sympathetic, understanding, and a good communicator, so I said fine.[3] I’ll call him Mike.
System differences among health care providers can be annoying. Dr. Larson and his colleagues use a charting/messaging system called athenahealth. M Health Fairview and some other Twin Cities systems use MyChart. On athenahealth, I could contact a physician as soon as I had an appointment (and I did so). MyChart does not allow such contact; you have to have had an in-person appointment before you can message someone on MyChart.
I made my irritation with this restriction known to a nurse when I called my new clinic to ask about sending information to Mike. Nope, couldn’t do it. What if I compose a message, print it, and mail it to Bob the old-fashioned way, using the post office? The nurse was a little surprised at the question but conceded that I could. So that’s what I did. I didn’t want to arrive at my April 3 appointment and have to go through the entire litany of events from Florida. What a dumb rule, in my opinion.
Sam, of course, asked how my appointment with Mike went. “A really nice guy (came into the exam room, stuck out his hand, and said ‘I’m Mike, glad to meet you’). He ordered the PSMA PET scan as we talked.” It was scheduled for April 18 (so yet another two weeks of waiting, sigh). “When I mentioned to Mike that Dr. Larson commented ‘that the cancer may have gone into bone or a lymph node,’ Mike told me he had a patient two years ago with a PSA of 5,000 (!); cancer had spread to his bones. He had seen that patient last week and he was fine. So that’s encouraging.”
Part of my concern was based on ignorance. Even though Dr. Larson had said an April 14 appointment was okay, I told Sam for the umpteenth time that “these delays are annoying. I keep imagining the cancer is spreading day by day and these delays are just making it worse. Larson said it was ‘serious’; I thought he’d said malignant, but Kathy said she was waiting for that word and she recalled that Larson never said it.”
I did receive one small bit of good news. I called BC/BS about the PSMA PET scan and learned that they do pay for it, minus a $200 copay. Pocket change compared to a potential cost running into the thousands. Phew.
When the person scheduling the PSMA PET scan asked me if I’m claustrophobic, I inferred that it would almost certain to be in an MRI-like machine. The order from Mike notes “eyes to thighs.” Fortunately, I am NOT claustrophobic; I can just close my eyes and stay still.
Once again, however, timing is screwed up. I have a new urologist appointment on April 14 and a scan on April 18. That seemed to me backasswards, so I sent a message to the urologist to ask if it would make sense to postpone the April 14 appointment until after the scan on April 18.
Now gravely-voiced Rhonda comes into the picture, on April 6. Thank goodness.
I take a call from Minnesota Urology where my April 14 appointment is to take place. She tells me she’s Rhonda and calling because the urologist I’m to see on the 14th decided he was not the right one (Dr. Larson’s nurse—a gem—had faxed all my Florida records to MN Urology) and that I should see one of their prostate cancer specialists. I tell her I’ll do whatever they think best, and that I really want to move this process along. She said they don’t believe in having patients wait. Rhonda told me, about three times, that she’s been with Minnesota Urology for 32 years and knows who to contact and what to do.
Rhonda got me an appointment with the specialist the next day.
While we were negotiating the calendar (of course I was going to clear my calendar of any events to get this appointment), I groused a little about the April 18 PSMA scan through M Health. Rhonda didn’t like that at all. She said she’d call me back. She did so; she got me a PSMA PET scan in two days, April 8, the day after I saw the specialist!
Rhonda added that she’d already gotten prior authorization from BC/BS—in one day I have to wonder if that speed was not only because Rhonda knows everyone but also because it was a local clinic dealing with a local health insurance company, one that BC/BS has probably dealt with hundreds of times. As opposed to a Florida imaging clinic that they’d likely never dealt with. Whatever. I was just so pleased to finally see things moving along apace and grateful there are Rhondas in the world.
The specialist was a young guy but I liked him a lot, Dr. Olin (a pseudonym). Very clear in explanations and answering my questions. I told him my single major question was whether the cancer was successfully treatable; if so, the rest is just details. Dr. Olin said it absolutely is treatable but drew a distinction between cure and treatment. If it’s only in the prostate or a little outside it, then cure is the plan. If it’s spread any further, then it’s suppression—but, he added, men live many years with suppression. I don’t know what that would entail. But I’m not terminal. Always good to know. Anyway, Dr. Olin referred me to a radiologist who specializes in urologic oncology.
Dr. Olin said he didn’t know if Dr. Larson’s recommendation of 9 weeks of radiation was right, which is why he referred me to the specialist, but he agreed with Larson that radiation and hormone therapy was right, not surgery. That was welcome; I would have been perplexed and troubled if Olin had recommendations different from Larson. Dr. Olin also emphasized that delays of days or weeks didn’t matter much because these are very slow-growing cancers. That reassured me, as it was a question I’d been dwelling on as time was passing and nothing was happening in the way of actual treatment.
The PSMA PET Scan
As with the biopsy, this was a three-hour venture, but in this case that number included an hour of travel. In order to have the scan quickly, my buddy Rhonda sent me to Brooklyn Park. Minnesota Urology has a traveling rig that goes between clinics, and they had an opening on the 8th when it was in Brooklyn Park. To give you an indication of how far out of the center of the metro that is, there are farm fields adjacent to the clinic.
After I check in, the nurse takes me across the parking lot to what looks like a semi. I am glad I do not have to drive that vehicle. I am ushered into a little room that is all gray and white. I am placed on a very comfortable recliner and she drops a warm blanket over me. I took a photo (in the lower left, those are my feet, covered in the blanket).
I need to have a radioactive solution injected so that the PSMA PET machine can read my cancer. After inserting an IV in my arm, the guy doing the injection stands in front of that steel box and fiddles with something and withdraws a vial that he attaches to the IV.
I asked him if wears a lead-lined shirt or vest, dealing with radioactive material. He said he did not; only tungsten would block the radiation from this solution. I also recalled that the instructions for the scan indicated that I should not be near pregnant women or small children for six hours after the scan. He agreed. “You’re a walking x-ray machine.” That sounded a little creepy.
At that point he left me in the room and said they’d be back in 45 minutes. The radioactivity had to circulate in my body. The warm blanket, the room warm, a lot of background noise from machinery—I dozed, and the nurse startled me when she came back into the room.
I asked the nurse how much the machine cost. It’s a specialized scanner, used only for PSMA scans. She said “a couple million dollars” and added that this was a brand new machine, more sophisticated than previous ones and it produced much clearer pictures.
Because of the zipper on my jeans, I had to get them down to my knees so they didn’t interfere with the scan. I was on the scan bed; the nurse covered me with a blanket so I wouldn’t have to push them down in front of her. I assured her that I knew one has neither dignity nor modesty in medical settings. As with the biopsy nurses to whom I’d said the same thing, she laughed and agreed.
The scan took far less time than I expected, about 20 minutes. I was done and on the road back home. They probably say this to all their patients, but it was amusing nonetheless. The nurse told me it was two-for-one day, so I could have another scan if I wanted it. I chuckled. They said no one has ever taken them up on the offer.
Now it’s just dealing with the details. About five weeks of radiation (starting in nine days) plus hormone therapy (starting today, lasting up to two years), which is about what I expected. Some mild side effects, nothing I can’t deal with.
I can’t say I’m cheerful about all
this but I’ll get through it and get on with life.
[1] Throughout this narrative I will include excerpts
from email exchanges with a long-time friend who went through this process
several years ago and who has been tracking me as I go through it. His comments
were extremely helpful. I will refer to him as Sam. I will refer to my
urologist in Florida as Dr. Larson. Both are pseudonyms because I did
not seek their permission to quote or allude to them. I have quoted several
other friends as well, also anonymously, and I would like to believe that they
would approve my drawing on their wisdom and observations.
[2] I
didn’t intend to write more, but a number of friends asked that I keep up the
story. So I will. “part 2” will be forthcoming.
[3] I wondered about having a PA rather than a physician
as my “PCP,” but have since learned that to be certified as a PA one must have
a master’s degree in medical science, so they do have advanced training in
medicine.
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