Triblog

Fifty days, seven weeks since surgery for prostate cancer. Ticking through the elements of recovery, I seem to be making very good progress, better than I expected given some of the information and individual stories I’d been reading. 

Physical recovery from the surgery is almost in the rear view mirror. By this, I mean the common issues following any surgery. The five skin incision sites are still pink but have no other issues – no tenderness, no itching, no numbness, none of what I might expect to plague me for months afterwards. Inside, where my prostate was scooped out of the cul-de-sac (the hollow at the lower end of the abdominal cavity, between the rectum and bladder), I have never sensed any pain. I have had a very occasional feeling of discomfort, mostly associated with activity in the colon/rectum, and also with a very full bladder. This does not happen daily and for less than a minute when it does. The generalized weakness one feels after surgery – which I ascribe to the body spending most of its available energy to repair the damage done – is progressively improving, but there are still days when I nap 45-50 minutes, or decide to simply take a day off. I can go out, shop, meet with people, eat out, see a movie, attend a birthday party – all the social activity I would normally be doing.

I have an extra level of recovery, getting back to swimming/biking/running/gym work at the level I was before. I feel I’m half-way back. I swam 2000 meters for the first time yesterday in the lake. I am spending 35 minutes 3 times a week in the weight room, albeit at about 80-90% of the weight I used to manage. I’m running 3+ miles four days a week. But at surgeon’s orders I am still not biking, not for another month. I miss that, as it was the activity which allowed me to go at the highest intensity. I’ve never been a really fast swimmer, and my knees can’t tolerate long or hard running any more. So without biking, my heart rate never gets above 130, and I don’t really work up a sweat. It’s the final tier of High Intensity Training that keeps me at the fitness level to which I’m accustomed. My body and my mind miss that feeling.

My bladder control has shown steady, surprising improvement.

I’ve been keeping track of my urine loss by weighing the pads I wear to protect my clothing. The trend is clearly and steadily downwards, from over 80 ml (nearly three ounces) per day two weeks after the catheter was removed to an average of 10 this week. Even when I run for 40 minutes, very little comes out. Four weeks ago, I was losing nearly everything in my bladder when running – 40 ml or so – compared to almost nothing – 5 ml yesterday – now. And that despite going a bit faster, and spending more time running compared to walking. A month ago I started at one minute run, one minute walk; yesterday was ten minutes run, 1.5 minutes walking. (The big spike represents a 2.5 hour brisk walk I took along the “beach” in West Seattle – a typical Puget Sound shoreline trek with some sand, and a lot of rocks.)

The fourth and scariest element of recovery is, “Did the surgery work?” The idea of course is to remove as much of the cancer as possible. While the post-op pathology report gave me guarded hope, I knew that only the PSA level would be truly informative. Prostate cancer luckily produces Prostate Specific Antigen (PSA), and so treatments can be managed by following that lab value. It’s a test I’ll be getting periodically for the rest of my life. In the two years before the surgery, my test went from 3.54 in March ’21, to 5.72 in March ’22 to 6.2 in June, 6.8 in November to 8+ just before surgery. On May 22, 2023, the result was “Less than 0.02ng/ml”, meaning that essentially no PSA was detected. I was with Cheryl and daughter Annie when I got the report that evening. High Fives were exchanged all round.

I’m left with one final element of recovery, penile rehabilitation. Some of the nerves controlling the blood flow leading to engorgement underwent a bit of a shock as they were delicately stripped off the prostate during its removal. It may take months or years before they fully recover. In the meantime, it’s important to replace their action with alternatives to maintain periodic blood flow in the area. That’s done pharmaceutically and mechanically. I found an excellent program to follow out of Australia. For those who want to go farther down that rabbit hole, here’s the link: 

While it’s harder to measure improvement in this area than it has been with my bladder, I’m satisfied with where things are at this time.

I’ll probably check back here after my 3-month visit with the surgeon. 

EXECUTIVE SUMMARY

Surgery took a bit over four hours. I left the hospital 24 hours later, catheter in place. I was able to walk immediately, and today went 2.15 miles in 50 minutes. Nine days after surgery, I remain functional, but more tired than usual. My abdomen has five inch-long incisions on it (8mm), with associated bruising and swelling. There is more swelling south of there, tender but slowly resolving. The catheter came out three days ago, and my bladder function is slightly better than I expected. I spoke with the surgeon yesterday about the pathology report, which in general is about as expected. Next major steps: in about 2 weeks, begin sildenafil-aided training of affected vasculature. And in about 4 weeks, obtain the first of what will become life-long monitoring of prostate specific antigen levels. Details follow for the morbidly curious.

POST-OPERATIVE COURSE

I did not like how my lower abdomen felt when I woke up. Multiple sharp, stabbing pains, which I grade @ 7-8/10. Several doses of fentanyl brought that down to 6-7, then dilaudid helped a bit more. But I was not having any fun when they sent me to the floor after an hour in recovery. The surgeon, Dr. Winters, stopped by in the midst of my narcotic fog. He said something about “stickiness” in one spot of the specimen, which provided me with no insight. The next 24 hours featured the usual parade of nurses, blood pressure, temperature, and pulse checks. Toradol helped with the pain, and gave me several episodes of 1-2 hours of sleep. I walked twice, for 10 minutes with a nurse the evening of the surgery, and for 20 minutes by myself the next morning. The most pleasant part: getting my calves rhythmically massaged by the leg compression device. Soft, comforting. Cody (with Abby) and Shaine each visited me for a half hour or so. I am so lucky to have adult children who live nearby, and care about me. Makes me feel I did a few things right as a father.

After lunch, Cheryl drove me home, and I began 5 days of dealing with an indwelling catheter. Irritating, but manageable. I had gained 5 pounds of water weight during the surgery, and started mobilizing and excreting it, at the rate of about 2 liters a day.  The swelling has been most evident in (graphic detail follows) the obvious dependent locations: ankles and calves; medial thigh and groin; penile shaft; scrotum; base of the abdomen with floppy sacs like a bilateral hernia at the level of the pubic bone; and in the lower abdomen in the area of the incisions. Bruising was evident to a greater or lesser degree in all those areas. While I took some Tylenol and Alleve on a regular bases for the first five post-op days, I am back to my standard 650 mg of extended release Tylenol every morning, and no issues with pain, at my current movement level.

Over the course of the past nine days, my sleep cycle has returned to normal, with the exception that my naps can be longer, like a hour or more. I began structured walking immediately, trying to add 5 minutes each day. The distance and pace has increased as well, but I am not trying to “go fast”, just walk without discomfort.

BLADDER

More graphic detail… With the prostate gone, my bladder function is, well, different. A bit of anatomy here. Urine exits the bladder through its “neck”, which is shaped like a funnel. That neck, along with the prostate below it, is removed during the surgery. Those two anatomic features provide males with significantly more control than women have over the flow of urine from the bladder. With them gone, it is a lot easier for urine to simply drain from the bladder with the slightest amount of pressure from above. Now, instead of trying to force urine to “break the seal” at the bladder neck, and then squeeze through the ever enlarging prostate, when I want to go it flows right out. Without those barriers restricting flow, urine also comes out unbidden, a drop at a time. Not a flood, or even a flow, but enough to result in wet garments if I don’t use a pad to absorb it. At night, though, the bladder behaves itself. I am awakened by very subtle signals of fullness, and can make it to the toilet easily in time. In medical speak, I have mild stress urinary incontinence, but no urge incontinence. Everything I’ve read and heard says this is normal post-operative, and may start to improve within 3 months, continuing to get better for a year or two. However, about 10% of the time, further help might be needed. For now this is manageable. About 5-10% of the urine I make during the day seems to leak out a drop at a time, primarily when I move around. I’m trying to learn not to notice.

CORPUS CAVERNOSA

Even more graphic detail follows…Penile erection occurs though the engorgement of blood vessels in the shaft called the corpus cavernosum (there are two, one on each side). The trigger(s) of that engorgement are multiple and complex, involving hormones, emotional state, tactile feedback loops, and parasympathetic nerve stimulation. Prostatic fluid and semen storage may also play a role. Much of this is disrupted by a radical prostatectomy. Small nerves are cut, blood vessels are harmed, swelling and bruising squeezes the tissues involved. It’s a major trauma, from the point of view of sexual function. In the past two decades, surgical techniques have improved to allow “nerve salvage” in favorable cases. Dr. Winters, my surgeon, elected to dissect free and “save” both nerves.

He and his staff are eager to find out how much erectile function I have left. According to them, I should try to stimulate the area, digitally, not through intercourse, to help the blood vessels regain their engorging capacity. This will be aided by the drug sildenafil (generic Viagra). Cheryl and I are going to wait on this until all the swelling and bruising has gone, another two weeks or so I suspect. It will be a new stop on our mutual intimacy journey now extending 48 years.

As a side note, ejaculation and erection are two different functions. In simple terms, it is the sympathetic nervous system which mediates ejaculation. That, as well as orgasm, can happen even in the absence of erection. Although without the prostate gland, it results in a “dry ejaculate” (oxymoronic, in my opinion as a wannabe English major).

PATHOLOGY

Less graphic, but maybe more gruesome. This is the real story, as opposed to the after-and side-effects above.

Top level diagnosis: Stage pT3b N0 prostate adeno carcinoma.

Details: Good news – there is no extra-prostatic extension. There is no bladder neck involvement. All Lymph nodes removed were free of cancer. Estimated percentage of prostate involved with tumor is 15%. No intraductal carcinoma identified.

Histologic grade: Grade Group 3 (out of 5), Gleason Score 4+3=7. [Grade 2/score 6 would be the best prognosis, 5/10 would be the worst.] A little worrisome, but treatable and curable in the large majority (85-98%) of cases.

Not so good news: there is cancer in the seminal vesicles. That’s the “b” in the cancer stage. My surgeon did not expect this finding; all the rest was consistent with what he anticipated based on my biopsy and other studies.

Additionally, I had a genetic DNA study done which shows no known mutations which make me more prone to aggressive forms of this disease.

WHAT’S NEXT?

I have done some research about the likely course of my disease based on what we know now, but it is premature to go down that rabbit hole. The goal of the surgery was to remove all of the cancer. My surgeon is guardedly optimistic he has done that. But even with a “perfect” path report, prostate cancer patients receive on-going follow up. Luckily for us, the prostate makes a protein, known colloquially as PSA, which is found nowhere else in the body. Cancer cells make more of this protein than normal prostate cells, hence the use of PSA as a screening tool It is even more valuable to follow the course of the disease and guide further treatment. Ideally, if all cancer cells are gone, the PSA should fall within 3-6 months (the earlier, the better) to “undetectable” levels. If it doesn’t, or if it begins to rise, then additional treatment might be required, involving radiation and/or hormone suppression. Prostate cancer cells grow better when “fertilized” by male hormones; suppressing the hormone production starves those cancer cells.

Dr. Winters wants to get a PSA level in about 4-5 weeks. I’ll work on keeping my mind off that as best I can.

On April 5^th

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I’ll be having a robot-assisted radical prostatectomy. After my father died from metastatic prostate cancer in 1996, I started getting PSA (prostate specific antigen) tests every year or two. Four years ago, the levels began to slowly rise, hovering just below the abnormal range. Two years ago, the level rose a little faster, and last December, my urologist and I agreed to get a biopsy, which on Feb 9^th this year was positive. (Details about this here and here)

After bone and CT scans which showed no spread outside the prostate, and a couple of second opinions, I decided to have surgery. Given the specifics of my situation, the probability of my remaining disease-free for the next 15 years is close to 98%. (More details here.)

My biggest concerns, apart from the fear factor always associated with “cancer”, are the common side effects stemming from the strategic location of this organ, one of which is I can’t ride a bicycle for at least three months. This won’t be the first time I’ve faced a major recovery challenge (details here & here), so I’m pretty confident I won’t be laid too low by this.

As I waited for my date with the biopsy needle, in January and February of 2023, I investigated my risks from the diagnosis I expected to receive. First off, would the cancer kill me, and if so, when?

            No one who is currently healthy can predict what he will die from or when. The word “cancer”, though, automatically carries a premonition. Cancer is not a single disease, like diabetes. It is rather a moniker applied to abnormal cell replication in any bodily tissue or organ. Cells are continually dying and being replaced by the creation of new ones. Almost always, that replication occurs without a hitch. The DNA in a cell’s chromosome makes a copy of itself, and goes on to create another cell with all the same characteristics of the previous generation. Every now and then, though, a mistake is made, and the cell can for one reason or another, change course and worse, start reproducing itself at a faster rate. Usually, our immune system finds and destroy such a renegade. Rarely, one breaks through, and begins to make more and more of itself. Like a snowball rolling down hill, the clump of cells gets bigger and bigger until something stops its growth. It may run out of new blood vessels to bring it sustenance. It may take too many resources from its host body, killing that host. It may be removed by a surgeon. The body might take a poison which stops cell growth (chemotherapy), or specifically latches onto the cancer cells and arrests their activity (immunotherapy). Powerful radiation might be directed at it, disrupting the DNA reproduction process.

            Some of these cancerous cells replicate faster than others, or are less easily killed. Some spread more easily (invasion), or are better at enabling the creation of new blood vessel feeders. Some can break off and travel to other parts of the body (metastacize). Some are harder to kill with drugs or radiation; some are harder to remove by surgery. And each person’s own strength, immune system, and the size and nature of the abnormal cells within them have a significant bearing on the life history of their cancer.

            For decades, researchers have looked at groups of people with similar cancers, and documented how they respond to treatments, how long they survive, and in what condition. Uncounted studies exist which give percentage outcomes for almost any question one can ask about the cancers of all the disparate parts of the body where it occurs. But…percentages are meaningless for any individual person. For me, or anyone else facing an illness, the outcome of any question is either zero or one hundred percent.

            Even so, I’m willing to ask the question, “How long might I live?” Specifically, have studies been done which might help me do more than guess? Here’s one, from Sloan Kettering Cancer institute: in 2013, they published a report on 1,167 Swedish men diagnosed with prostate cancer, and looked backwards at their PSA levels at age 60, then forwards to their death, or age 85, whichever came first. They found that “men who had a PSA level of 1 nanogram/ml or lower had a 0.2 % chance of dying from prostate cancer.” My PSA at age 59.7 was 0.84; @ age 61.3 it was 0.97. Good news, at least for the next 12 years! (And, since this was a retrospective study and many of the men involved were diagnosed and treated 10 to 20 years before me, their care may not have been as good as mine will be.)

            Here’s another study, from 2016. The authors are from Yale, Sloan Kettering, Mayo Clinic and Cleveland Clinic. They set out to “Predict risk of death from prostate cancer based on age and PSA level prior to diagnosis.” They looked at the records of 230,000 men in the Veterans Affairs data base aged 50-89 diagnosed with prostate cancer, who had at least one PSA result between 1999 and 2009. They found that, at least during the 10-yeasr time frame they studied, among the men aged 70-79 with a PSA in the range of 5-9.9, 8% died. Well, a little less reassuring, but still, room for optimism. Again, this group includes treatments from 14-24 years ago.

I’m sure there are many, many more studies I could get lost in attempting to find out just when my ticket will be up. But it makes no difference (“all statistics are meaningless”). More important is, how should I be treated to have the best chance of “success”, defined as the longest probable life assuming nothing else goes wrong with my body? The National Institutes of Health, the American Cancer Society, major cancer research and treatment hospitals, highly respected medical clinics all say pretty much the same thing here – you, the patient, must decide. 

Here’s an example from my own health care plan, Kaiser Permanente:

• Radiation therapy or surgery may be used to treat your prostate cancer. Both treatments work well. With either treatment, the chance of your cancer spreading is low.
• Both treatments have side effects, such as bladder, bowel, and erection problems. Radiation therapy is more likely to cause bowel problems. Surgery is more likely to cause leaking urine or erection problems.
• If your goal is to treat the cancer by having your prostate removed, then you may want to choose surgery. For some people, the idea of “getting the cancer out” brings a sense of relief. For others, avoiding radiation may be what is important to them.
• If your goal is to treat the cancer and avoid the risks of major surgery, then you may want to choose radiation therapy. For some people, preserving their sexual function for as long as possible is what they value most. Having radiation rather than surgery may help avoid erection problems.
• One treatment may be better for you than the other because of how long you might live (your life expectancy), your other health problems, and how you feel about each treatment. You and your doctor can talk about your situation.

Hmm, a lot of ifs, ands, buts there. How to sort through this? I’d like to say I dived deep into the research, considered percentages and likelihoods, and all. But I started with two immediate reactions to my news of prostate cancer. First, as soon as I saw the text telling me about the biopsy, I felt immediately in my gut – literally, I sensed a feeling within my mid-abdomen – that I wanted it out. And when I asked Cheryl, what was important to her, she said, “I want you to live as long as possible.. Starting from there, I began to look for logical and factual back-up for my initial emotional reaction.

Despite all the experts saying that surgery and radiation are similar in outcomes, I wanted some specific research data to back up that data which might be relevant to me as a 73/4 year old with a PSA of 6.8, Gleason scores of 6, 6, &8, healthy and fit. I found a 2010 study in the journal Cancer looking at 7500 men treated in 40 different urological practices under standard protocols. For my specific stage (CAPRA 3), surgery has a 95.77% survival rate after 10 years, compared to 93.14% for radiation. Two statements stood out in their discussion. “…Among those with higher risk disease [my Gleason score of 8 in one specimen puts me in that category]…men receiving prostatectomy are much less likely to die than those receiving external-beam radiation…” And, considering this study was over ten years ago, they note “…we found that the survival differences were if anything greater when restricting the analysis to a more contemporary cohort.” The subtext of that last statement: it was only after the turn of the century that robotic laparoscopic radical hysterectomy began to appear in the surgical tool-kit of urology cancer specialists. During the past 20 years, incremental improvements have been made in this procedure to improve outcomes. “Cure” rates have increased and side effects have improved in the past 10 years as a result.

My urologist, Dr. Iriye has been following me since he took care of my bladder stone 2018. He’s not very demonstrative, but has gotten used to how I think about myself and my values. We both agreed immediately it was time for a biopsy. But apparently, there wasn’t a lot of urgency, as it was scheduled for two months later. February 9^th.

During the interim, I enjoyed two ten-day long ski trips, in addition to the hectic fun of the holiday season. The biopsy, and its attendant risk of upending my life, simmered below the level of my awareness for two months.

I read up a bit on the procedure. The prostate is tucked between the rectum and the bladder, making the best approach through the rectum. After blocking the local nerves with lidocaine, like a dentist would for a filling, a special ultrasound probe is (gently) placed there, with a spring mechanism enabling a rapid insertion and withdrawal of a long needle into and back out of the prostate, like taking a core sample of a tree or a glacier. An enema, and two antibiotic doses are employed to minimize the risk of infection. Lying on my side facing away from the doctor, all I felt apart from the slight discomfort of the probe itself, was a bubbling vibration as each of the ten “shots” went into and out of my offending organ. 

Two days after the procedure, I left for my third ski trip of the season to spend a week with my son, sister and brother-in-law for what would turn out to be my final time on the slopes this year. 

Nowadays, there’s no need to wait for the doctor to call with the results; I got a text message during our first dinner out that the results were available. I thought I was prepared for what I read. But when I read that the biopsy showed three of the cores were positive, I felt a rush of dread. I looked for silver linings. The size seemed small – 4-5 mm each. Two of them had a Gleason score of 6; the one from the left apex was 8.

What’s a Gleason score? A medical pathologist examines each of the specimens under a microscope, looking for any cells which appear abnormal.  The less they look like normal prostate cells – the more “undifferentiated” they appear – the higher the score. Oddly, the range is almost always from 3 to 5. Two grades are given for each positive site. One grade is assigned to the most dominant pattern in greater than half the slide examined; another grade to the remaining area. The term used to assign the number is well- moderately- or poorly-differentiated. The key sign is whether glands are still apparent in the tissue. A lot of glands = well-differentiated; no glands = poorly-differentiated. These findings can be used to help predict how “aggressive” or likely the cancer is to grow and spread.

A few days before the biopsy, I decided to secure a second opinion, no matter the result. I began the process through the Fred Hutchinson Cancer Care Center, associated with the University of Washington (UW). My brother-in-law (wife’s sister’s husband) had prostate cancer @ age 62, 18 years ago, operated on by a UW surgeon. Anita (his wife) is an RN and a very assertive, inquisitive lady. She probably knows more about his case than he does, and he’s an MD! So I asked her for advice on whom I should consult for a second opinion. Within 2 weeks, I had appointments with the head of surgery at UW, and the former urologic oncologist there.

My initial conversation with Dr. Iriye on Feb. 15^th was typically brief and clarifying. I told him my immediate emotional reaction was to “have this taken out, gone,”, and that I would be talking soon with a couple of other urologists. He endorsed that, then ordered a CT and Bone scan to look for spread and metastases.

The scans, performed on Feb 27^th, were both negative – no evidence of spread or other lesions were seen. On Feb 20^th, I Zoomed with Dr. Tia Higano.  On March 1^st, I had an in-person visit with Dr. William Ellis. On March 3^rd, I spoke again with Dr. Iriye. Those discussions, plus more reading I had been doing, confirmed my inclination to have surgery rather than radiation. Dr. Iriye referred me to Dr. Brian Winters, a Kaiser surgeon in Bellevue, WA, who specializes in laparoscopic prostatectomies for cancer, using the Da Vinci surgical robot. Dr. Winters followed his urology residency with a fellowship under Dr. Ellis at the UW. They both spoke highly of each other. Dr. Winters called me that afternoon, and his scheduling team contacted me a few days later, setting up the surgery for April 5^th. I felt like Atlas relieved of the mountain on his shoulder. Less than five weeks to go!

I imagine it begins, my prostate cancer, with my father. I’m still awaiting results from the genetic test ordered by the oncologist I Zoomed with, who advised it might make a difference in how much hormonal treatment I should receive, once primary treatment is completed. After watching a polished video featuring a trim woman in her thirties delicately massaging her cheeks, I drooled saliva into the plastic tube offered by the DNA analysis lab. The video suggested it might take two to five minutes to spit enough into the vessel to reach the fill line. But I overshot with the first two squirts. Ever since I smashed my jaw on the tailgate of a Silverado pick-up while cycling in preparation for my third Hawaiian Ironman, I’ve had quite an overactive sub-lingual salivary gland behind the rebuilt bony ridge which now houses titanium implants supporting nine perfectly formed crowns, a cool off-ivory, replacing the nine teeth I lost.

The liquid I produced did not seem to reach the bottom of the tube. I assumed after I added the reagent solution and shipped it off in the cleverly folded cardboard mailer, the lab would be pleased to have such a generous sample. Not so. Days later, an email scolded me that my test could not be analysed. One of the possible problems noted was excess solution. They sent me another kit, which I am less than eagerly awaiting. In the meantime, I reflect on my father’s death, from metastatic prostate cancer at age 80, eight years after his initial diagnosis and radiation treatment in Grand Junction, Colorado, 35 years ago.

I watched him suffer the last two months from recurrent cancer which had found its way into his pelvis and spine. Apart from that brief time, I had never seen him sick in the five decades I knew him. Six months after his death, I had my first PSA test.

For the next 20 years, I had twelve more tests which, though slowly rising as is normal with age, remained within normal limits. In June of 2020, that multi-catastrophic year, the PSA more than doubled on 24 months. A faint alarm, a tiny angel’s bell, began to ring. Over the next two years, the number hovered on one side or the other of the lower edge of concern, between 3.54 and 4.8. I practiced a version of Active Surveillance/Watchful Waiting. I avoided sex and bicycle riding for days before each test. At first that worked, keeping my number below the fateful 4.0. By March, 2022, when the result shot up to 5.72, I at last admitted to myself I could no longer ignore the pealing in my head, the knowledge that I would have to travel through a diagnosis and treatment jungle.

A repeat test in June rose again to 6.2. I told my urologist I felt I needed a biopsy to convince myself I did not have cancer. We had an in-depth conversation during which he reviewed the arguments for and against treating prostate cancer, or even looking further for its existence. He explained the side effects of treatment on the bowel, bladder, and sexual functions. He noted that many men – maybe half by the time they reach their mid-80’s – die with cancer present, yet succumbing to other ailments. With no organ failure of any kind, no heart disease, diabetes, dementia, nothing which requires me to take prescription medicine, an extremely fit metabolism due to more than 35 Ironman races since the turn of the century, I told him I expected, without this cancer I was sure I had, I expected to live another 15-20 years.

But I was not quite ready to enter the medical labyrinth. In October, I planned on racing my last Ironman, the sport which has defined me for decades, on Hawaii. I knew that If I underwent a biopsy in, say, August, and it came back positive, I would possibly pull the plug, or at least seriously disrupt that endeavor. So I asked him, “Will this kill me in the next year?”

“No.”We agreed to repeat the test after the race and the one-month vacation Cheryl and had planned in the Southwest. On November 30^th, it came back 6.8. Time to get serious, I decided.