End of the journey

It’s sad to note that there’s another transition to mark in our prostate blogging community.

Tim and I had been commenting on each other’s blogs on and off again for over three years, and he always offered insights and support, often injected with a bit of humor.

Tim's pc journey

To all Tim’s blogging friends – Tim passed away peacefully in our local hospice with me at 2.20am this morning.

Love and best wishes to you all

Liz x

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Month 106 – Almost Time

Work is insanely busy for me right now, so this will be a shorter post than usual. (“Thank you!” you say.)

I’m coming to the end of the six months since my last PSA test (and the first six month test frequency in many years), so it’s almost time for my next visit to Dracula. I’m looking at my calendar and I’m thinking that I’ll go somewhere around 7 or 8 October, but anticipation may have me try to squeeze it in a little earlier. Perhaps even the tail end of September. Either way, I have an appointment with the urologist on 22 October to review the results.

I’m not even going to try and predict where the next marker on the chart will land. My spreadsheet failed me wonderfully last time out. As I recall, it predicted a value of around 0.14, and I came in at 0.10. One result at a time…

As a refresher here’s my PSA chart:

PSA 20190326

Last week, I stumbled across a comment in a Facebook prostate cancer support group that talked about rising PSA, and the author recommended reading/viewing Dr. Charles “Snuffy” Smith’s article, “When Recurrent PCa isn’t Cancer.” Dr. Smith is the editor-in-chief of the website, Prostapedia.

The video was published four years ago, but Dr. Smith seemed to reinforce the notion that my continued surveillance of my PSA without taking other action may not be as crazy an idea as many may think it is (including myself, on occasion). Of course, I’m sure there are plenty of others out there who would argue otherwise, too.

Even though there are a thousand opinions out there, we patients sometimes forget that we really can control our treatment path, as long as we do it in a well-researched and well-thought out way, assessing the risks and rewards. I get to decide what to do in the end. It’s my body and my life, after all.

Stay tuned.

High-dose vitamin D: negative results from a randomized clinical trial — THE “NEW” PROSTATE CANCER INFOLINK

Here’s an interesting trial with surprising results.

Data from a recently published, Canadian, clinical trial of high-dose vitamin D as a method to strengthen bones in healthy adults who do not have osteoporosis have had significant and unexpectedly negative results.

via High-dose vitamin D: negative results from a randomized clinical trial — THE “NEW” PROSTATE CANCER INFOLINK

September is Prostate Cancer Awareness Month

prostate-awareness-350

It’s that time of year again. Time to turn everything blue in support of Prostate Cancer Awareness month.

But more important than turning everything blue is educating yourself about this disease.

For those of you who think that prostate cancer is an “easy” cancer, or “cancer-lite,” you’re wrong. Sure, it has a high treatment success rate when caught early, but it also takes lives.  So far this year, two of my fellow prostate cancer bloggers succumbed to this disease. It’s not something to ignore.

Get smart about prostate cancer. The life you save could be your own.

A Life Well Lived | Yet Another Prostate Cancer Blog

In nearly nine years of blogging about prostate cancer, I’ve learned that there’s a small but very supportive community of fellow patients fighting this disease.

That community just got a little smaller with the passing of Jim from “Yet Another Prostate Cancer Blog.”

Jim and I never met in person, but he was the person who commented on my posts and emailed me more than any other person. We both shared a passion for photography, and he followed my photography blog, providing his commentary there, too.

I knew this day was coming, but it came upon us sooner than expected.

Jim was an inspiration with his strength and attitude. He’ll be missed by many.

https://yapcab.wordpress.com/2019/08/17/a-life-well-lived/

Month 105 – Skipped PSA and Imaging News

Last week was a little weird for me. If I had kept to my four-month PSA testing cycle instead of the new, agreed upon six month cycle, I would have gone to the clinic and had Dracula siphon off another vial of blood. But I didn’t, and it felt pretty comfortable with that. Still, a little voice in my head wondered what my current PSA level is, but in a non-panicky kind of way. More in just a plot-the-next-data-point-on-my-chart kind of way.

I’ll go for the PSA test in late September or early October. My schedule that time of year is a bit crazy, so I need to carve out a date and time and get it on my calendar.

It’s hard to believe, too, that in a few weeks it will be four years since my PSA became detectable again. With a calculated PSA doubling time of over 150 months, I’ve been pretty comfortable taking the surveillance approach that I have for as long as I have. There are moments, however, where I do ask myself if I’m taking too great a risk by using that approach. Those thoughts have popped into my head a little more frequently since my hallway consult with the radiation oncologist a few weeks ago.

Maybe the test results in October will give me more clarity and a better sense of direction; maybe they won’t.


In other news, I saw the recent article comparing the effectiveness of the 18F-fluciclovine (Axumin) imaging against that of the  68Ga PSMA imaging. The study used 50 patients with PSAs ranging from 0.2 to 2.0.

The PSMA imaging is proving itself to be more effective at detecting the locations of recurrent cancer but the kicker is that it’s not yet an FDA approved imaging technology.

Still, it’s good to see that progress is being made in the research for those of us who would really like to know that we’re going to be zapping where the cancer is rather than somewhat randomly based on statistics. I’m sure there will be more to come.

Day 3,175 – Unexpected Consult & Twisted Thinking

Last Thursday, a physician came into our office (keep in mind my office is in a hospital) and was asking about how to bring a volunteer on board to shadow him in radiation oncology. Of course, my ears picked up with the “radiation oncology” part of his request.

After explaining the process to bring his volunteer on board, I asked him if Dr. W was still in radiation oncology. Dr. W was the radiation oncologist that I saw in May 2018 to discuss my rising PSA, and he told me then that he planned on retiring in the next year or so. Dr. W had, in fact, retired according to Dr. B, the physician with the volunteer question.

Dr. B asked how it was that I knew of Dr. W, so I explained that I had the consult with him for getting zapped for recurrent prostate cancer. A bit to my surprise, Dr. B started asking a question or two and, the next thing you know, we’re having a ten minute consultation in the lobby of my office.

In a nutshell:

  • His threshold for starting salvage radiation therapy for recurrent prostate cancer was when the PSA hit 0.10 ng/ml.
  • He talked of how statistically the likelihood of the cancer being in my prostate bed is pretty high. In a tangential way, he implied that having positive margins confirms that the cancer is still in the prostate bed; having negative margins, as I did, makes things slightly less certain.
  • We had a very cursory conversation about imaging technologies, but my sense was that his view of the newer technologies was more optimistic than what I’ve read about their effectiveness at my PSA level.
  • He talked about how deciding to treat is a very personal decision and that there’s no right or wrong answer. But, with a PSA of 0.10, he said that I will be dealing with this again at some point in the future and, if I wait too long, the options for dealing with it become fewer.

At the end of the conversation, he was saying a treatment decision is also based on life expectancy and overall general health. Nothing new here. If I was 85 and had a cardiac condition, he wouldn’t recommend zapping; but if I’m younger and in generally good health, he would treat. “I would get treated if it were me.”

I thanked him profusely for taking the time to have a hallway consult when he was under no obligation to do so. I told him that I have another PSA test coming up at the beginning of October, and that we’ll see what that brings.


Now for the funny part and insights into how twisted my thinking can be at times…

Dr. B’s comment about life expectancy struck a chord with me because it’s something that I often joke about.

My father died at the age of 69 and his mother also died at the age of 69, so I’ve always joked that I’ll follow in their footsteps and die at 69, too. “It’s hereditary,” I’d say. Most would find it pretty morbid and tell me to knock it off.

If you’ve been reading this blog for longer than three minutes, you know I’m a numbers guy (see post title). So on the bus ride home after speaking to Dr. B, curiosity got the better of me. I wondered how freaky it would be if my father and grandmother lived the same number of days in their 69-year lives. When I got home, I ran the numbers.

I plugged their birth and death dates into the duration calculator that I use to calculate the day number of these impromptu posts and found that they didn’t live the exact same number of days, but it was close. Dad outlived Oma by 49 days.

You know I couldn’t just leave it there.

If I live as long as my grandmother, I’ll be checking out of Hotel California on 29 July 2027. If I live as long as dad, it will be 16 September 2027. If I follow Dad’s trend an outlive him by 49 days, it will be 4 November 2027.

And then I had my “Oh, shit!” moment.

I may have less time remaining than the amount of time that I’ve been running this blog—3,029 days (best case) vs. 3,175 days.

I began to wonder what I will do in those eight remaining years. If I have only one big trip a year, what are the eight places I want to go see? How many more times will I see the people important to me if we see each other only once ever 1-3 years? How much longer will I continue to work?

I know it’s cliché as hell, but it was a bit of a wake-up call to get me off my butt and doing more than I am right now. Nothing like having a deadline to motivate you, eh?

I also know that there are no guarantees. I could get hit by a car crossing the street tomorrow, or I could live until I’m 90. I don’t dwell on any of this, but it’s nice to be reminded—albeit in a twisted way—that none of us are getting out of here alive, no matter how hard we try to avoid the inevitable, and that the days we have left should be cherished and embraced, whether in ways big or small.

Oh. If I make it to 5 November 2027, everything from then on is icing on the cake. 🙂

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…

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