NOTE: this is part of an ongoing series of posts about my journey with prostate cancer. So far the posts include:
1. January 30: “When Cancer Comes Calling”
2. February 16 – “Waiting in Mutual Ambush”
3. March 11 – “My Prostate is History” (on the surgery)
4. March 13 – “Letters Before Surgery” (saying goodbyes)
5. March 14 – “Cancer Prognosis: Uncertain Grace”
6. March 22 – “Post-Surgery Incontinence”

When Cancer Comes Calling
David R. Weiss – January 30, 2025

This is one of those pieces that I never wanted to write. One of those pieces you never wanted to read. But here we are. So, please, sit with me for a quiet moment. You’ll each have your own (and legitimate) feelings in response to my words here. But for this moment, just sit with me.

On January 16 I learned that I have prostate cancer—and that the cancer is pervasive and aggressive. This is heavy and hard news. For me. For Margaret. For my children. And, of course, for others in my family and in my circle of friends. Still, as I collect my words to share this news, I am filled foremost with gratitude and an apprehensive peace.

I’ll explain each of these carefully chosen words, but first let me recount the rather short path to this day. One quick caveat. I’m writing not a medical doctor, nor as a medical educator. I’m sharing my best understanding of my situation—and I mean to be as medically accurate as possible. But I’m writing from inside my experience as a (brand new) person-with-cancer. My learning curve—and my feeling curve—is likely to be steep.

[This is a LONG post—about 5000 words. If you prefer to read it offline, you can download it as a pdf.]

My path began on October 2, 2024. That’s the day the bloodwork at my general physical showed a skyrocketing PSA score.

PSA stands for prostate specific antigen. It’s a protein made by prostate cells that ends up circulating in your blood, where its level can be easily and precisely measured. That’s your PSA score. A “normal” score can range from 1.0 ng/mL (nanogram/milliliter) to around 4.0 ng/mL. But “normal” is slippery, because PSA scores typically rise slightly with age—and because there’s no direct causation between a higher PSA score and cancer. So, a PSA of 2.5 is considered high enough to warrant follow-up testing and/or biopsy if you’re under 50, while a score of 4.5 is still considered within the “normal” range if you’re over 60, and a score as high as 6.0 is “normal” if you’re over 70.

Prior to this past October I never much worried about prostate cancer. True, both of my twin uncles on my dad’s side have had prostate cancer (one at age 58; the other at 63). Both had their prostate surgically removed and were cancer free as they turned 70 later this month. I just turned 65, and I’ve never had any symptoms that would cause concern. No difficulty peeing, no blood in my urine, no frequent night-time trips to the toilet, no erectile dysfunction. (Well, no erectile dysfunction other than Peyronie’s Disease, which is its own little joy, but not related to my prostate. That story is told here.) There was nothing that would have caused me to worry—or to anticipate a high PSA score.

I’m pretty sure I’ve had my PSA checked at every general physical since I turned 50—usually every 2-3 years. In the twelve years prior to this fall, over six physicals, my PSA score had always fallen within the normal range. Always between 1.5 and 2.5, until 2021 when it came in at 4.24. But by then I was 62 years old, so my score still just below the upper edge of normal (4.5) for a man 60 or older.

So, I was stunned when I opened my test results in MyChart and saw a PSA score of 21.0 ng/mL. My scores over the past twelve years look like this: 2.1, 1.5, 1.8, 2.0, 2.5, 4.24, and 21.0. Make that into a graph and skyrocketed is not hyperbole. My primary care physician assured me that while my PSA was “quite elevated,” it did not automatically mean that I have cancer (there is no direct causation), but it did merit further evaluation. And he put in a referral for me to see a urologist.

A quick internet search added this fascinating tidbit about correlation. Prostate cancer is very rare in people with PSA scores below 4. If your PSA is between 4 and 10, there’s a 25% chance that cancer is present. If your PSA scores is over 10, your cancer risk is at 50%. And none of the sources I looked at went higher than that. A score over 10 was bad news. My score was 21.

I looked at the list of urologists in my network and in my geographical area—and picked a doctor who seemed old enough to be “experienced” and young enough to be “up to date”—he’d finished medical school in 2012 and completed his residency in urology in 2018. I called for an appointment and discovered it would be months before he had an opening. I took the first available appointment (for January 7), even though it meant a 45-minute drive; the first opening at his nearer clinic (just a 20-minute drive) wasn’t until February.

Thankfully, his office called in early November and told me that because of a cancellation he could see me virtually on November 21, if that worked. I made it work. At that initial consultation, he explained (as I had already learned) that a PSA of 10 indicated a 50% chance of having cancer, and that a score 21.0 made it overwhelmingly likely (but not certain) that I had prostate cancer. He also said that because I have no common symptoms of an enlarged prostate (like needing to pee during the night), which is also correlated with high PSA scores, the odds of my PSA score indicating cancer are even a bit higher—but still not certain. Finally, he added, on the plus side, that if I do have cancer, the fact that I’m symptom-free right now would suggest it’s in the very early stages.

He recommended the next step as an MRI of the prostate, which would provide him with a very accurate image of the size and health of my prostate. It would pinpoint any lesions (unusual cells, including pre-cancerous changes in the tissue) as well as any suspicious spots (tumors) that require a biopsy. He said, quite frankly, that given my PSA score, he expected to find something to biopsy. But he assured me the benefit of the MRI would be to give him a very complete picture, so he’d know exactly what and where he needs to go for a biopsy.

When I shared the news from my consultation with Margaret, my dad, and my sisters, I summed it up like this: Bottom line: I might-maybe-probably(?) have prostate cancer, but it’s typically very slow-progressing, and mine (if it’s even there) is probably in the early stages, so right now, until the MRI, it’s fair to just breathe deeply and stay calm.

Now, I know it’s neither slow-progressing nor in the very early stages, but those deep breaths and that choice to remain calm (as best I could) are still probably the best practice I could get for what’s needed in the days ahead.

I called right after that November 21 consultation to schedule an MRI. Although there are several MRI imaging machines in the Twin Cities areas, my urologist recommended I set an appointment at the University of Minnesota MRI center because they have the strongest MRI magnet in the area, which provides the clearest image possible. I got the earliest appointment I could: Sunday, December 29, at 7am.

Sidenote of fierce irony. Back in late September, just a week before my skyrocketing PSA score lit up my sky, and two months before making the MRI appointment, I’d volunteered to plan and lead the Sunday service at my Unitarian Universalist congregation also on December 29. My chosen theme: “Ending the year on edge: finding presence in liminal moments.” Sure enough, both in planning that service in mid-December and in leading it—just hours after the MRI itself, and after seeing the results of it pop up in My Chart—I was indeed ending MY year on edge and doing my best to find presence in liminal moments.

About an hour before heading off to lead that service, I scanned the test results in MyChart. The MRI showed two lesions (clumps of abnormal tissue—maybe cancerous, maybe merely odd). On first glance, I didn’t understand everything in the test report—and my follow-up consultation with my urologist wouldn’t happen until January7—but it wasn’t hard to tell that overall it was not good news.

The two lesions were “graded” by the MRI doctor on a scale of 1-5, using an internationally accepted standard called PIRADS (Prostate Imaging Reporting And Data System). This grading system seeks to ensure a consistent “best practices” approach to diagnosis and treatment in prostate cancer. PIRADS grades run from P-1 (clinically significant cancer is highly unlikely to be present) to P-2 (clinically significant cancer is unlikely to be present) to P-3 (the presence of clinically significant cancer is equivocal) to P-4: (clinically significant cancer is likely to be present to P-5 (clinically significant cancer is highly likely to be present).

The smaller lesion on my prostate was graded PIRADS 4. The larger lesion was graded PIRADS 5. Well, shit. Not only did this mean clinically significant cancer was highly likely to be present (90%), it was a grade “highly suggestive of aggressive prostate cancer.” Definitely on edge. The thin silver lining: I figured (correctly) that a PIRADS 5 grade would probably get me a “go-to-the-head-of-the-line” card for a biopsy. And then Margaret and I headed off to church to co-lead that liminal Sunday service.

Later that evening I asked her to come sit by me on the love seat in our family. I hadn’t told her that I’d seen results already that morning. She was already “on edge” enough to be well-qualified to be my assistant service leader that day, and I thought one of us (me!) reeling a bit inside was plenty. But at the end of a busy hectic day, we sat side-by-side and read through the test results together. Heavy and hard.

Besides the PIRADS 5, we read “there is high suspicion of extraprostatic extension (EPE) with possible involvement of the neurovascular bundle”—which meant that it appeared the larger lesion had grown beyond the prostate itself into surrounding soft tissue. Only suspected at this point, but EPE is one indicator of “high risk” prostate cancer because it’s related to both a higher likelihood of recurrence after treatment and an increased risk of metastasis (which is the worst-case scenario for prostate cancer—when it sets off on its own into other parts of the body). Plus, if it was indeed “involved” with the neurovascular bundle, any successful treatment would have an increased chance to undercut both my continence and my sexual function. HEAVY. AND HARD.

We knew we didn’t understand everything. We knew we understood enough to know the next nine days (until the follow-up consultation) were going to feel LONG. Sometimes liminal moments happen in the blink of an eye; this one spanned more than a week.

On January 1, I “celebrated” by the new year by sharing what I knew from the MRI with my kids, my sisters, my dad, and two couples that Margaret and I are very close to. We didn’t know enough to feel it was time to share it more widely, but we knew enough to know we didn’t want to move through the next few long days entirely on our own.

We met together with the urologist on January 7. He confirmed everything we had gathered when we first reviewed the test results. Nothing was certain yet. The MRI provides images, but it’s not yet as conclusive as a biopsy. But there was a tone of urgency in my urologist’s voice. During our meeting, he checked his schedule, found he had an open slot just three days later—on January 10—and penciled me in for a biopsy that day then and there. His office called to officially confirm the appointment within 30 minutes after we ended the consultation.

Another aside. December 29 was a FULL day. Besides the 7am MRI and the Sunday service at 12:30pm, smack in the middle of that service, 450 miles away in Indiana, my dad (88) went SMACK. Just after having stood up from his easy chair, he lost his balance and fell backward onto the floor in his living room, cracking his head hard on a wooden closet door on his way to the carpet. He didn’t actually “crack” his head; but he did actually crack—fracture—his neck. That’s a whole other saga. Suffice to say he needed surgery to fuse the cracked vertebra between two stable ones, spent over two weeks in the hospital, and is now at a rehabilitation center where he’s making slow but steady progress toward recovery. And hopefully toward returning to independent living in his own home.

Needless to say, it’s been a challenge navigating both my cancer journey and my dad’s neck fracture and recovery over the past month. Either one would’ve filled my plate. Together they stacked my plate HIGH. On January 10 I had my biopsy; the day after I drove eight hours to Indiana to spend most of the next four days with my dad at the hospital (and with my sisters, too). On January 15 I drove back to Minnesota so Margaret and I could meet with my urologist to review the biopsy results.

The biopsy was done right at my urologist’s clinic/office by him and two assistants. It’s a fairly simple procedure, called a transrectal prostate biopsy, which tells you just about everything you need to know. But let me tell you just a bit more. I’m in a slightly modified fetal position. After appropriate “preparations” (including local anesthetic) the doctor places a long rod about a finger’s length into my rectum; it features an ultrasound on the tip and a “needle guide” running alongside it, backed up by a “needle gun.” Once positioned, the doctor can “see” my prostate on an ultrasound monitor—and then pull up the MRI image from two weeks earlier and “fuse” that image with the ultrasound image. This lets him sample the prostate very precisely, making sure to draw samples from both lesions spotted on the MRI as well as from the rest of the normal prostate tissue.

To take samples he “fires” the needle gun, which sends a slender needle very quickly through the wall of my rectum into the prostate and just as quickly withdraws a tiny “core” sample. Each sample was about half an inch long and the diameter of a standard mechanical pencil lead. It was not nearly as uncomfortable as it sounds. He counted down, “three, two, one,” before firing the gun each time. Then there was a loud click, and I felt a momentary “poke-and-suction” sensation, over as quick as it started. Seventeen times.

Each time he called out the location that had been sampled, handing the core over to one of the assistants who labels it and prepares it to go off to pathology. Altogether the procedure itself only took about 15 minutes but it unlocked a whole new level of wide-awake vulnerability at the hands of my medical team. Afterwards the cores were sent off to a pathologist for careful analysis I went home and packed so I could drive to Indiana on Saturday.

The time in Indiana with my dad and sisters kept me focused on his needs, challenges, and recovery, as well as building support with my sisters to plan for his ongoing care and return home. Of course, those pending biopsy results were in the back of my mind the whole time, but the front of my mind was well-occupied—at least until Tuesday night.

That’s when the pathology report appeared on MyChart. With cancer written all over it. Well, just on the left side, but all over the left side. Wednesday morning I headed back to Minnesota and that evening I had another quiet sobering moment with Margaret, once again, not understanding everything we knew, but knowing that we knew enough to know my life—our life—was about to change. We made love before going to bed, not out of desperation or fear, but with tender fierce intimacy. We were still on edge, but lovemaking is its own liminal moment, and whatever was coming our way, we were going to meet it with all the strength of our love. “Undaunted” would be a foolish word to employ in the face of so much uncertainty. Determined says it better. We fell asleep that night determined.

On Thursday morning, January 16, we had a virtual consultation with my urologist to review the pathology report. This is where “pervasive and aggressive” come into play.

Of the 17 core samples, every one of the eight taken on the right side of my prostate, including the two from the smaller lesion, came back benign. There is no cancer there. Unfortunately, all nine cores from the left side—three from the larger lesion and six from the rest of the left side of the prostate all came back as cancerous. In each sample, the percentage of cancerous cells ranged from 70%-90%. So, pervasive. The cancer is not limited to the larger lesion; indeed, there appears to be no corner of the left side that has not been taken over quite thoroughly by cancerous cells. Pervasive.

Each core is given a Gleason Score by the pathologist: a measure of just how abnormal the cells in the sample are. Cell abnormality is directly correlated with uncontrolled growth: aggressiveness. Gleason scores range from 2-10, with higher scores meaning more aggressive cancer. The Gleason scores for the nine cores taken from my left side are: 7, 7, 7, 8, 9, 9, 9, 9, 9. No 10s, but a boatload of 9s. Aggressive.

The cores are also given a Gleason Grade, which is sort of a “weighted score” to help guide treatment plans. Scores from 2-6 equal Grade 1 and are often treated by “active surveillance” (careful monitoring) as they reflect slow-growing cancers. Scores of 7 equal Grade 2 or 3; they’re considered “intermediate grade” cancers and might be treated with targeted radiation. Scores of 8 equal Grade 4, and Scores of 9-10 equal Grade 5. Both of these grades are considered “high grade” / “high risk” cancer; they’re the fastest growing and the most likely to metastasize (to spread to other organs or areas in the body).

Men with Grade 5 prostrate cancer have the least favorable outcomes. Thus, heavy and hard.

My urologist explained that for “high grade” cancer, radiation isn’t typically a good initial treatment option. Given the risk of metastasis (of which there is NO evidence—as yet) radiation isn’t quick enough, and it can make follow-up surgery more difficult. So, his strong recommendation is for a radical prostatectomy (the complete removal of my prostate). He believes it offers me the best prognosis, although “best” is a complicated word here.

We have already scheduled that surgery for Wednesday, March 5, at 8 a.m. (at Southdale Hospital in Edina). Why not sooner? Because, umm, my rectum was recently punctured seventeen times, and it’s not wise to do surgery right next to a rectum until it’s had 6-8 weeks to heal. My urologist will do the surgery himself. Well, him and a da Vinci robot. I’ll write more about that in a future post. I’ll be in the hospital just one night.

What is “best” prognosis for “least favorable” outcomes? Turns out there’s an app for that. Right there during the virtual consultation my urologist shared his screen, entered my PSA score and punched in the Gleason scores from my biopsy. I think this was the moment we both felt a real pit in our stomachs. Even with my prostate (and all its cancer) gone, I’ll have a 60% chance of making it (15 years) to my 80th birthday. But, because Grade 5 prostate cancer is pernicious, even with total removal, there’s an 83% chance that cancer cells “shed” prior to removal will eventually spark a recurrence of cancer somewhere else in my body within 5 years. A 90% chance this will happen within 10 years. HEAVY. HARD.

This is called micrometastatic disease. These are tiny bundles of cancerous prostate cells, too small and too few to be picked up by even the best imaging. Not yet tumors, they can move silently through the body. Some of them simply die; but others can eventually form tumors that can attach themselves anywhere else in the body—usually somewhere from the pelvis up to the brain. The only “good” thing about them is that, as prostate cells, they carry the same protein that shows up in a PSA score. Post-surgery, with ZERO prostate in my body, my PSA score should be ZERO. By carefully monitoring my PSA in the months and years after surgery, we should be able to know quickly if and when any micrometastatic disease reaches a threshold of detection, and then use a PET scan to locate where it is and target it while it’s still young with radiation.

Two last words about the surgery. In removing the entire prostate, I’ll lose 1-2 inches of my urethra (it runs right through the prostate). The urologist will stitch the two ends together, but (oh joy) I will go home with a catheter for nine days while my urethra heals. I’ve had catheters before on account of kidney stones. Not my favorite medical accessory. Ah, well. We’ve already scheduled its removal on March 14. Besides that tiny bit of urethra, I’ll also lose all of my “neurovascular bundle” on the left side, and it’s possible that its partner bundle on the right, will be slightly damaged as the prostate is carefully pried away from it. That bundle of nerves and blood vessels is what orchestrates continence (your ability to hold your pee) and erections. I will almost surely face a couple months of incontinence, although there are both cognitive and physical exercises that should help me regain most if not all of my continence within a year or so. Regarding the other loss, as my urologist put it, although there are medications and other things that can offer assistance, “the truth is that the best erections of your life are definitely in your past.” HEAVY. And not so hard anymore.

Thankfully(?), my fifteen-year experience with Peyronie’s Disease (which bends my penis—but only during erections—whose thought that was a good idea?!) has “invited” me and Margaret to find means of physical intimacy even when all the parts don’t work the way they originally did. Been there. Done that. Still, heavy.

In fact, it was all so much heaviness that Margaret and I both missed the potentially heaviest piece of it all. We ended the consultation with all our questions answered, a surgery date set, and some hardly devastating but certainly sobering odds in front of us. I’d also been instructed to make an appointment for a pre-operative physical with my primary care physician, just to make sure I was healthy enough for surgery. No concerns there. And a referral for a “Eyes to Thighs” PSMA PET/CT scan to confirm I was “all clear” for surgery. Nothing of concern there either. Or was there?

Someone from the U/M hospital called right away on Thursday morning, and I scheduled the scan for January 27. It wasn’t until several days later, as I was watching a learning video about robot-assisted radical prostatectomy that something clicked. “If your cancer has metastasized you are not a candidate for a radical prostatectomy, and if, even mid-surgery, the surgeon notices evidence of metastasis, your surgery will be ended without removing the prostate and other treatment options considered.” Wait … what?

After a burst of internet research and an exchange of messages with my urologist via MyChart, the full heaviness of this scan set in. Because my PSA score was so high and because my biopsies revealed a cancer that was so high grade—aggressive—there was an unfortunate but very real possibility that it had already “left the barn” and spread to other places in my body. The MRI had shown no evidence of this, but the MRI had only looked at my prostate and the immediately area around it in my pelvis. Grade 5 prostate cancers are known to bolt out of the pelvis for greener pastures anywhere between the “eyes and the thighs.” Hence, the nickname for this scan.

The CT part of it uses a contrast dye administered through an IV to make organs more distinctly visible; it “maps” my internal anatomy. Then the PET part uses a radioactive agent, also given by IV and allowed to circulate in the body for an hour, to track down and “light up” any prostate cells … anywhere between the eyes and the thighs. It’s the same scan that would be used to locate any recurrent cancer in the future.

It was being done now, before my surgery, because if it showed any metastasized cancer between my eyes and thighs, the just-scheduled surgery would be canceled, and we would move to plan B treatment options. There are plan B options for metastasized prostate cancer, but their odds make a 60% chance of making it another 15 years look positively rosy. I realized this on Thursday, January 23, a full after the last post-biopsy consultation, and four days before the scan itself. It twisted inside me uncomfortably for the first 24 hours. I wasn’t scared, per se. But I was very much alone, because no one but me and my doctor knew the full stakes of the upcoming scan.

Friday night I sat down with Margaret for a third time to tell her what I had realized—and what my urologist had confirmed. If the scan found any metastasized cancer it was a whole new ballgame. No surgery. And even with the best remaining treatment options on the table, my odds of making it through the next five years, to reach my seventieth birthday, would plummet to 34%. We sat in silence for a while. HEAVY. HARD.

And we entered the weekend, sharing this most liminal awareness with just four people, the two couples we’ve made our closest companions on this journey. By Monday night, it might become no big deal. And if it did alter everything, we’d share that news only once it was certain. No reason to drag any of our family onto a 4-day roller coaster ride from hell.

Monday’s scan was easy. Two passes through a big metal hoop, once to capture anatomical images of my body and a second pass to listen intently for any radioactive echoes of prostate cells anywhere between my eyes and thighs. Echoes that would sound an awful lot like Agent Smith from the Matrix. “You hear that, Mr. Weiss? That is the sound of inevitability―it is the sound of your death.” I heard nothing., of course. The machine did all the listening. And, thankfully, it heard nothing either.

There is now (doubly confirmed, by MRI and by PET) zero evidence of metastasis beyond my prostate. Some possible suggestion of spread to an adjoining lymph node, but nothing that has moved past there. And that node will be cleanly removed along with the prostate. So, I should be “cancer-free” by noon on March 5. (Which more honestly means that any remaining cancerous cells in my body will be undetectable—too few and too far flung to register at all.) Post-surgery, my PSA will be watched … closely. I’ll still be at high risk for recurrence down the road (that’s the “gift bag” that Grade 5 prostate cancer comes with), but as noted above, the moment my PSA score registers at all, my care team can go into action to figure out where those rogue cells are and deal with them.

Suddenly (by 5pm Monday evening, just a few hours after the PET scan, when the results showed up in MyChart), a 60% chance of reaching 80 and some (hopefully temporary) incontinence and some (hopefully creatively managed) erectile dysfunction ED seemed like a pretty decent deal … given the other option! Perspective is everything.

And truly, perspective is everything. I am thankful, of course. And yet, having now joined the fraternity of those with prostate cancer, every thankful moment like this is also bittersweet. It comes with the recognition that my having dodged those odds means someone else did not.

Finally, I come to those last few words: “gratitude” and “apprehensive peace.”

Gratitude because Margaret is the best partner-companion-friend-lover-spouse I could have asked for. And I know she will be right at my side throughout this. And because I have the best circle of family and friends. I am least of all alone. And as I face this, I am filled with boundless gratitude for all of you.

Apprehensive because it seems like “cancer-free” will not be a certainty—not even a realistic hope—ever again. And yet, despite that inevitable apprehension, I am at peace. Life is framed by death and made meaningful by purpose and love. My life abounds with purpose and is rich in love. I will surely, from this day forward, be more aware of the frame of death, which may come nearer to me at any moment now. But I will fill the days I have (and may they be many!) with purpose and love. And I will be glad to have you with me for each day that is mine to live.

*******

David Weiss is a theologian, writer, poet and hymnist, “writing into the whirlwind” of contemporary challenges, joys, and sorrows around climate crisis, sexuality, justice, peace, and family. Reach him at drw59mn@gmail.com. Read more at www.davidrweiss.com where he blogs under the theme, “Full Frontal Faith: Erring on the Edge of Honest.” Support him in Writing into the Whirlwind atwww.patreon.com/fullfrontalfaith.