Life After Radical Prostatectomy: 8.5 Years Later

So it’s been 8.5 years since my radical prostatectomy on 4 January 2011. How am I doing?

Status

My PSA dropped from 0.13 ng/ml to 0.10 ng/ml at the last test back in March, which was quite the pleasant surprise. That’s more in line with three tests prior to the 0.13 test, so perhaps the 0.13 was the anomaly. In any case, we agreed to test in six months instead of the four month cycle that I had been on, and I’m okay with that. Two extra months of not worrying about PSA is a good thing.

Emotions

There isn’t a day that goes by where cancer doesn’t pop into my mind at least tangentially. The good news is that with such a slow upward trend in my PSA (PSA Doubling Time of 155 months or so), I’ve been able to shift my thinking to managing this more as a chronic illness than something to panic over. That’s been emotionally liberating. Of course, I may be playing with fire and my test in October will snap me out of that mindset.

Incontinence/Urinary Control

There really hasn’t been much change in this area. Still the occasional stress incontinence squirt and the post-pee dribble if I don’t go through my routine to drain my urethra. I’ll stick a pad in my underwear if I know I’m going to be more physically active, as that tends to cause a few leaks as well. On the whole, it’s more a nuisance than a real quality of life problem.

One of the good things is that I rarely have to get up in the middle of the night to empty my bladder, which means that I can sleep through the night. Mind you, though, that I need to get better at getting more than 6-7 hours of sleep per night, and that may change the equation a little.

There are times during the day, though, where I can have a sudden need to urinate right now, even though my bladder is far from its capacity. It’s an occasional thing, fortunately, and I’ve always been able to make it to a toilet in time.

Sexual Function

This is one area where I seem to be regressing a little. Erections aren’t as strong as they used to be; now they’re in the 60%-75% range. Again, that’s without chemical assistance. I may talk with the doctor about this the next visit.

Summary

My shift in thinking of this as more of a chronic illness has really been helpful. The stress and worry aren’t nearly at the levels that they once were, so that’s good. But that lasts only until the next PSA test, and then we take the latest factoid and go from there.

Month 103 – Regaining Focus

Last month I talked about turning a corner in my outlook on my current situation, and boy, I must have fish-tailed around that corner—fast—because cancer has been the furthest thing from my mind pretty much the entire month. Work had a lot to do with that, too.

I’m the volunteer manager for a nonprofit, and we had one weekend last month with five events going on all on the same day at five different locations, and I had to provide 160 volunteers in one day to cover them all. Plus, we had three other events later in the month that needed another 80 volunteers between them. Needless to say, my attention was on getting each of those events fully staffed, and thoughts of cancer fell by the wayside. That’s good.

One unintended side effect from all this is that I really haven’t been keeping up on the advances in the imaging technologies and latest research on treatment of recurrent prostate cancer like I once did. It’s actually been a refreshing break, but I want to get back into researching again so that I have the most current information available when I go for my next PSA test in October.

The cool thing this time around, though, is that I’ll be doing this research from the perspective of educating myself at a leisurely pace rather than one of  being constantly glued to cancer websites in sheer panic because my PSA was rising. That’s turning a corner.


My next post on 4 July 2019 should be a little more substantial. It will be my semi-annual Life After Radical Prostatectomy: 102 Months Later post with more detailed updates about how I’m doing eight and a half years after the surgery.

“If all you have is a hammer, everything looks like a nail”

Here’s an interesting article that a former boss of mine would call a “B.G.O.”—a blinding glimpse of the obvious.

If you go to a radiation oncologist, they’re likely to recommend radiation as your treatment option of choice, and if you go to a urologist, they’re more likely to recommend surgery. Doh!

This study was focused on treatment of patients with high risk prostate cancer. I’d be interested to see if the recommendations become a little more muddied for those of us with Gleason 3+4 or 4+3. I’d really like to see what their answers would be to the last question in the second table: Lowest PSA at which SRT is appropriate. That’s of obvious interest to me.

THE "NEW" PROSTATE CANCER INFOLINK

It was called “instrument bias” by Abraham Maslow and Abraham Kaplan, but for present purposes, we’ll call it “specialty bias” — over-reliance on the tool one is most familiar with.

Kishan et al. conducted a survey among urologists (“UROs”) and radiation oncologists (“ROs”) concerning their opinions about how best to treat high-risk prostate cancer patients in various situations from initial treatment to recurrence after initial treatment. They tabulated responses from 846 ROs and 407 UROs:

  • 63 percent of ROs and 96 percent of UROs practiced in the US; the rest mainly in Australia and NZ.
  • They had a median of > 10 years of experience.
  • 41 percent of ROs and 51 percent of UROs were in private practice.

Initial Treatment of High-Risk Patients

ROs were five times more likely to believe that initial treatment with radiotherapy (RT) with androgen deprivation therapy (ADT) and with local salvage therapy, if needed, was…

View original post 1,296 more words

Gallium-68 PSMA vs. fluorine-18 fluciclovine PET/CT scans

Interesting results. Now if the FDA would only approve the GA68 PSMA PET scan but, even if they do, it’s still pretty iffy on detecting cancer with my PSA level hanging out in the 0.10-0.13 range.

THE "NEW" PROSTATE CANCER INFOLINK

According to a presentation given yesterday at the ASCO meeting here in Chicago, PET/CT scanning with 68Ga-PSMA-11 is more accurate than 18F-fluciclovine PET/CT at detecting recurrent prostate cancer in men with early biochemical recurrence following radical prostatectomy.

The abstract of the presentation by Dr. Calais can be found here, and there is also a report on this presentation on the Renal & Urology News web site.

Basically, Calais and his colleagues carried out a prospective, single-center, single-arm, head-to-head Phase III study of paired 18F-fluciclovine (FACBC) and 68Ga-PSMA-11 (PSMA) PET/CT scans for localizing early biochemical recurrence (BCR) of prostate cancer in men who had previously undergone a radical prostatectomy.

The trial enrolled 50 consecutive patients with BCR and PSA levels ranging from ≥ 0.2 to ≤ 2.0 ng/ml who had not had any salvage therapy at the time they were scanned. All 50 patients were given…

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Month 102 – Turning a Corner?

Normally, there’s a relatively short half-life of feeling good after returning from a vacation. The mountain of work emails and unpaid bills that accumulated while you’re gone just suck the vacation memories and relaxed feelings out of you quite rapidly as you get back into the daily grind.

That’s held pretty true for me after last month’s trip to Switzerland, with two exceptions that, if I can keep the momentum going, make me feel as though I’m turning a corner.

For those of us who have introduced the word “cancer” into our vocabulary, we know that thoughts of cancer are always nearby. Some days we’re better at suppressing them than others. But when the notion of recurrence hits, the thoughts become more prevalent, more intense, and more psychologically draining over time. At least that’s what happened to me.

But since my vacation and since my visit with the urologist last month, I’ve begun to turn a corner in my thinking about my recurrence. In a nutshell, given my numbers (current PSA level and extraordinarily long PSA doubling time), my thoughts are finally shifting from panic to calm concern.

In some of the more recent literature about prostate cancer, you hear more and more people talking about treating some cases of prostate cancer as more of a chronic illness instead of an aggressive disease. For now, I’m happy to—rightly or wrongly—lump myself into the “manage it as a chronic illness” category. It certainly has helped relieve some of the stressful thoughts about recurrence and the potential side effects of salvage radiation therapy or hormone therapy. Of course, if my PSA shoots up again in October, that may change my approach to all of this yet again.

This approach certainly isn’t for everyone. I feel blessed to have a PSA doubling time of 155 months, but even so, I still recognize there’s an element of Russian roulette in my decision to continue to monitor for now. I’m okay with that.

The second exception to my vacation not wearing off within a week has been with my photography.

Spending ten days wandering around Switzerland with my camera (the first time I’ve flown with most of my gear) reinvigorated my interest in getting out and photographing even more, and that’s been therapeutic for me as well. When I’m looking through the lens and—excuse the pun—focusing on what’s in front of me, I’m not thinking about cancer. At. all.

I’ve been out with my camera every weekend and even a few week nights since coming back, and I hope I can keep the momentum going through the summer. I feel better, plus practice makes perfect. (Although there’s no such thing as a “perfect” photograph.)

In the end, I’m glad that I pushed myself to go on the trip. Perhaps the half-life of this vacation will be as long as my PSA doubling time (or longer).

—Dan

P.S. Sorry for the tardiness of this post. I was out playing. 🙂

Day 3,081 – PSA Discussion with Doctor

IMG_20190418_134348455While waiting for my appointment with the doctor this afternoon, I got caught up on reading about the new Datsun 280ZX in the waiting room in the May 1981 edition of Road & Track magazine. Seriously. That thing belonged in the National Archives, not the doctor’s waiting room. Needless to say, it was a fun trip down memory lane, as I had just graduated from college three months earlier and was driving my 1974 Ford Galaxie 500 (my first car).

The discussion with the doctor went about as expected. In a nutshell: Continue to monitor; no action needed at this point given my PSA level and my PSA doubling time of 155 months. (Calculated using the Memorial Sloan-Kettering PSADT nomogram.)

She told me something new, too, concerning the explanation for some of the very minor fluctuations in PSA levels. I knew that physical activity and having orgasms before a blood draw could impact your PSA level, but she said that even variations in your hydration level can cause minor variations in your PSA readings. Interesting.

Just for grins and giggles, I asked her the $64,000 question: How do you define biochemical recurrence?

There was quite a long pregnant pause before she responded, “That’s a difficult question to answer.” She explained the that it’s been defined many ways and, while she never did answer my question directly, my impression was that she was in the “two or more consecutive increases in your PSA level” camp.

One thing the doctor said, too, was that she has seen cases where patients PSAs start increasing and then plateau and sit there for years without much change at all and no need for intervention.

She also suggested that, given where my PSA level was and how slowly it was moving, that we could retest in six months instead of sticking to the four month schedule that I’ve been using for the last three and a half years. I agreed. I return on 22 October 2019.

Again, the meeting went pretty much as I expected it would, and I’m okay with what we discussed.


I had a great trip to Switzerland in the first half of the month despite some dodgy weather (which is to be expected in northern climates in April). If you’re interested in reading about it (or at least just looking at some photos), you can check it out on my other blog, Travelin’ Dan.

Month 101 – Homeward Bound

This will be a short post, as I’m hammering this out on my tablet somewhere between Zürich, Switzerland and San Diego.

In December, Delta Airlines was having a 24-hour sale on its Delta One service to Europe, and I jumped on the opportunity. I landed a round-trip ticket for 128,000 frequent flyer miles and $93 USD in taxes, fees, and travel insurance. Sweet! The only catch was that I had to travel between February and early May.

When I went into planning this trip, it was a “What if I have to have radiation and this might be the last big trip I can take?” kind of thought running through my head. It was a bucket list trip of sorts. But then my PSA results came back and it became more of a celebratory trip.

I’ll work on my detailed post for my travel blog, Travelin’ Dan, once I recover from the trip and a 9-hour difference in time, and review a few hundred photos and process only the best. In a nutshell, though, I visited Luzern, Interlaken, Bern, and Fiesch. The photo for this post (above) was taken from the Schilthorn and shows (from left to right) the Eiger, Mõnch, and Jungfrau mountains.

For fun, here’s a cell phone photo of the Aletsch Glacier on the south side of the Eiger, Mönch, and Jungfrau, at 23 km / 14 miles, the longest in the Alps. One person told me they had about a meter of fresh snow a week earlier. (It snowed while I was in Luzern.)

And a back-to-reality reminder: I talk to the doctor on the 18th about my most recent PSA results.

Day 3,060 – PSA Results: WTF?!?

Okay. Sorry to use the vernacular, but what the f*ck?!? My PSA went down from 0.13 ng/ml to 0.10 ng/ml!

Not that I’m complaining, mind you. But, seriously, WTF?

This is great news, but when you get yourself psyched up for yet another increase (after 3.5 years of pretty steady increases), it certainly plays games with your mind when the number goes in the opposite direction in a substantial way. Did I ever mention that I hate this disease?

I can’t wait to hear what the urologist has to say about this on 18 April. It should be entertaining.

So that’s that. Go figure.

PSA 20190326

Dr. Daniel George on PSA Recurrence

This article discussing PSA recurrence showed up in my reader about the same time that I went for my PSA test, so it was pretty timely.

I’m not a subscriber to Protastatepedia, so I can’t see the full articles that they post.

https://wp.me/p4yQj7-zm

One of the things that Dr. George talks about is the PSA doubling time as an indicator to aggressiveness. Using the Memorial Sloan Kettering Cancer Center PSADT calculator, my doubling time was 35 months before this week’s reading; now it’s at 155 months.

Yes, that last reading is most likely and anomaly skewing the results. Or perhaps the 0.13 reading was the anomaly and I’ve been holding steady at the 0.10-0.11 range for a while. The next test will tell.

I like the idea of treating this as more of a chronic illness than something to go after aggressively given my numbers. We’ll have that discussion with the doctor on 18 April.


Getting on my soapbox for a second…

Prostatepedia certainly doesn’t seem to want to engage their readers. I left a comment on their blog and, when it wasn’t even moderated let alone answered, I left the same comment on their Facebook page. It’s now gone.

If you’re not going to acknowledge reader comments, Prostatepedia, why bother giving us the option to do comment in the first place?

Here’s what I wrote:

Thank you for a good overview of biochemical recurrence, but there’s one thing that you’ve omitted from the article: how biochemical recurrence is defined.

I know that for years, BCR after a radical prostatectomy was defined as hitting a PSA level of 0.2 ng/ml. But with the advent of the ultra sensitive PSA test, I’ve seen some suggest that BCR occurs with a PSA as low as 0.03 ng/ml. Others define it as three consecutive increases in PSA regardless of the value. Not having a clear and widely accepted definition is infuriating to those of us with an increasing PSA.

Cookson, et al., did a review of published articles on the topic of BCR (J Urol. 2007 Feb;177(2):540-5.). They reviewed 145 articles and found 53 different definitions of BCR. Needless to say, from a patient’s perspective, that just boggles the mind.

https://www.ncbi.nlm.nih.gov/pubmed/17222629/

I had a radical prostatectomy in January 2011, and had undetectable PSAs for 54 months when it became detectable at 0.05 ng/ml in September 2015. We’ve been testing every four months ever since, and my most recent PSA in December was 0.13 ng/ml. Using the MSK PSADT calculator, my PSADT is around 32 months.

Last May, I saw a radiation oncologist for the first time when my PSA was at 0.11 ng/ml, and he recommended starting salvage radiation therapy right away. Given my slow PSADT, I opted to continue to monitor. When I saw the urologist in December, he said that I haven’t even hit BCR yet because I hadn’t hit 0.2 ng/ml.

So on the one hand, I have one professional telling me that I have recurrence and the earlier we start SRT, the better the outcome chances are and, on the other hand, I have another professional telling me that I don’t even have recurrence yet. Frustrating.

I’m not asking for medical advice on what I should do, but I do believe that ANY discussion about biochemical recurrence includes how recurrence is defined and/or how the definition is evolving.

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