Day 2,948 – PSA Results

My slight sense of optimism that I gained after my last consistent PSA result was shattered at four o’clock this morning when I hopped online in a fit of insomnia to check my PSA test results from this week. I’m back on the upward climb again with a PSA of 0.13 ng/ml.

PSA 20181203 clean

My spiffy spreadsheet predicted a value of 0.129 ng/ml, so it wasn’t unexpected. Just my hope for a more stable PSA went out the window.

Obviously, I’ve got some serious thinking to do in the weeks ahead.

The predictive part of my spreadsheet shows the increase will continue at a rate of about 0.011 ng/ml every four months. In April, I would be at 0.140 and in August at 0.151. Is that rate slow enough to delay any decision about salvage radiation therapy a while longer? I don’t know.

Do I get involved with the imaging trial at UCLA to see if we can determine where the cancer is before undergoing salvage radiation therapy? I don’t know.

Or do I just say screw it and start the salvage radiation therapy in early 2019? I don’t know.

Stay tuned for the answers. That, or for pictures of ostriches with their heads buried in the sand.

Day 2,841 – A Chat with the Urologist

I met with the urologist this afternoon to go over my 1 August 2018 PSA test results and it was an interesting conversation.

This was a new guy wearing his spiffy white lab coat with the University of California-San Diego (UCSD) emblem embroidered on the pocket. (I pretty much see a different doctor each time I go to the VA hospital and, yes, UCSD doctors care for patients at the VA hospital, too.) I had my PSA trend chart printed and sitting on his desk when he walked in, which he appreciated seeing the whole history on one page.

I let him start the conversation and it was pretty clear right from the start that he was of the “continue to monitor; no need to act right away” mindset. He really focused on my PSA doubling time being so long as being the reason for his recommendation to just watch this for now.

I shared my conversation with the radiation oncologist with him and he really didn’t comment one way or the other about the R.O.’s initial recommendation to zap.

I did take advantage of the opportunity to discuss the urological side effects of being zapped in salvage radiation therapy. One of the things that I focused on was urinary strictures.

He explained that just by having a prostatectomy and stretching the bladder neck to reconnect with the urethra, you’re in essence creating a stricture to begin with. “That’s a good thing,” he said, “because it helps control the urine flow in the absence of the prostate.” But zapping the area will change the nature of the surrounding tissue and can cause it to close down further. If that’s the case, they may have to do a procedure to re-open things and that’s where you can get into the higher leakage scenarios.

One of the things that really resonated with me during that discussion about side effects was when he said that I shouldn’t even be worried about them because I could go months or years without even having to think about salvage radiation therapy. (And, no, I didn’t prompt him to say that!)

That led to a discussion about the newer imaging technologies and he reinforced what I already knew—that most are unreliable with PSAs less than 0.2 ng/ml. I told him that the spreadsheet that generated my chart shows that I won’t hit 0.2 until late 2020 or early 2021 if it continues at its current pace. Perhaps in that time, the new imaging technologies will be better and more reliable at lower PSA levels. (He was also empathetic to the idea of not zapping unless you knew where the cancer was.)

We also talked about the frequency of my PSA tests and his immediate response was that we could do this every six months, again, based on my PSA doubling time. That surprised me. We’ve been on a four-month cycle for three years now. He said it would be my call, so I opted to stick to the four-month cycle for at least one more cycle.

Wrapping up the conversation, I did ask, “If I do have to get zapped at some point, where would you do it? UCSD or Naval Medical Center?” He deflected my question and never responded, so I asked again. Again, he remained silent but his hint of a grin perhaps answered it for me.

All in all, I was pleased with the consult and am content to continue to monitor, with my next PSA test being in early December.

Yes, I know that more studies are showing that zapping recurrent prostate cancer early leads to better outcomes in the long run. But other studies (Pound, Freedland) show that someone with my pathology can delay or even forego additional treatment and its associated side effects impacting quality of life and stick around for an additional 8-15 years. So, yes, this is a bit like playing a game of chicken or Russian roulette, and that thought never leaves my mind.

So why not get zapped and be done with it? Because quality of life is very important to me and if I can maintain it for a few years more than I want to try and do that. Is there risk of the cancer getting away from me? Of course. But with continued monitoring and perhaps advances in imaging technology, we can stay one or two steps ahead of it.

Time will tell.

Month 93 – Questioning Recommendation

Regular readers of my blog know that I tend to overthink things. Big time.

I’ve had a few days to think about what the radiation oncologist said in his email—about continued monitoring being a very reasonable approach—and I began to question that bit of advice. Not necessarily its validity, but more along the lines of why the change of heart with the doctor?

When we had our consult in May, there was no doubt that his recommendation was to start salvage radiation therapy right away. He presented a pretty strong argument that early treatment is better than delaying. My numbers now are the same as when he gave his “treat now” recommendation, so why the sudden change to “okay to monitor”? Is he just appeasing me, telling me what he thinks I want to hear? Or does this one data point of a stable PSA really justify changing a treatment recommendation?

Don’t fret. As I said, I overthink things.

I’m perfectly content with the “continue to monitor” approach for the foreseeable future. I really don’t question the integrity of the radiation oncologist either. Even if he was appeasing me, part of being a good doctor is listening to the patient’s concerns and understanding that the patient’s perspective needs to be at forefront of any treatment decision. I only met with the doctor once, but given his take-charge personality, I’m confident that he would have argued more forcefully if he truly thought I needed radiation therapy right away.

I’ve put aside my little bout of cynicism and will focus on enjoying the next four months.

Speaking of four months, that’s the other little cloud that rained on my post-PSA parade. “Crap. I’m back in PSA limbo land yet again.” Mentally, I had prepared myself for the PSA to have gone up again and that I would be one step closer to making the zap or not to zap decision. It’s still emotionally draining even after almost eight years of dealing with this. Oh well. Suck it up, buttercup.


On a fun note, I was toying with the idea of driving out to the 96° F / 36° C desert tonight to try and capture the Perseid meteor shower with my camera (I’m writing this on Friday night). But after three hours in the dentist’s chair this afternoon, that ain’t gonna happen. I’m zonked. Perhaps Saturday night.

Here’s what I captured after an hour and a half of standing alone in the desert last year. A near-full moon was rising and illuminating the mountains, but it was beginning to be too bright to see meteors.

Perseid in ABDSP

 

 

Day 2,827 – Q&A with the Radiation Oncologist

Just a quick update…

I shared my last PSA results with my radiation oncologist via email yesterday to see if the results would influence his treatment recommendation.

He stated that a stable PSA is “great news” and that “continuing to monitor at this point is a very reasonable approach.” I also asked if a four-month PSA test frequency was appropriate or if we should look at increasing the frequency. With my numbers, he said that a three to six month frequency was most common, so sticking to four months was fine.

I also asked for clarification about sexual function after salvage radiation therapy. For some reason, I had it in my mind that from our conversation during the initial consult, he said that zapping me would likely damage my one remaining nerve bundle to the point that sexual function would be a thing of the past. He corrected me.

He said that post-radiation function is highly dependent on pre-radiation function. There will likely be some degradation, but not necessarily a complete loss of function as I had somehow lodged in my brain.

He closed the conversation by saying, “Hopefully your PSA will continue to behave itself and we can worry about that [sexual function] down the road.”

Needless to say, I was quite pleased with those responses.

We’ll see what the urologist says on the 21st (I put the wrong date in my last post) but, for now, I’m fine with doing nothing until my next PSA test in December.

 

Day 2,823 – Surprised

I was more than pleasantly surprised this morning when I learned that my PSA remained the same! It came back at 0.11 ng/ml, the same that it was in April.

PSA 20180801 plain

 

I learned the news from my primary care physician this morning when I was in to have something else checked out. In fact, I was so surprised by the result that I had to ask him twice to confirm that it was the 1 August reading and not the April reading.

I did ask him for his take on the reading, my history, and what he thought I should do next. He agreed that there are too many differing opinions and recommendations making it frustrating for patients. “Go with your gut,” was the best advice he could muster up.  Gee, thanks.

Of course, the stalled PSA growth (one data point does not make a trend), makes me inclined to kick the decision can another four months down the road—another four months without the side effects of radiation therapy. However, when I meet with the urologist on 19 August to go over the results, I’ll focus the conversation on the long term side effects of salvage radiation therapy because I don’t want to rule that completely out yet, either.

I may even email the radiation oncologist the results to get his take on them. Would he still want to zap me now (probably yes), or would he be more inclined to wait a while longer?

Regardless, I’m going to enjoy the results for now and think about decisions after the visit on the 19th.

 

 

 

Day 2,821 – PSA Test Time

It’s that time again. I had my blood drawn this morning and I suspect I’ll have the results online late Friday night.

My last PSA in April was 0.11 ng/ml and my handy-dandy spreadsheet predicts that this PSA will come in around 0.124 ng/ml. We’ll see…

If it does, that will add a little more pressure to make the “zap or not to zap” decision.

Stay tuned…

Day 2,722 – No Probability for Me

I’m one of those people who always thinks of a snappy comeback—three days after the conversation.

Over the weekend, I reflected on my conversation with the doctor last Thursday, and one of the things that I failed to ask was what probability he would assign to the notion that my increasing PSA is attributable to benign residual prostate tissue instead of returning cancer. I sent an email that asked specifically:

I fully understand that none of us have a crystal ball, but the one thing that I failed to ask Dr. is what he thought the probability of this being benign residual tissue was. Is it 5%? 25%? 50%? His experience gave him the insights to make the comment, so his experience may also be able to measure the likelihood as well.

To which he replied:

I’m afraid I am not able to assign a percentage likelihood to the chance that any residual tissue is benign. I can only really extrapolate from the rate of change in the PSA. The longer it took to be detectable and the slower it rises, the more it seems likely to be a bit of benign tissue. Either way, it is those lab values and their pattern that will help to guide treatment. If it rises quickly then will treat, since a) that pattern is more likely cancer, and b) if it’s not cancer it is acting like cancer and the stakes are too high to disregard even with a high % prediction at this point that the tissue is benign.

Hope that helps!

Dr.

His comment, “…b) if it’s not cancer it is acting like cancer and the stakes are too high to disregard even with a high % prediction at this point that the tissue is benign,” seems to be all over the place and contradicts his opening statement of not being “able to assign a percentage likelihood.” Hmmm…

So that was an interesting little exercise. I really didn’t expect him to come back with a specific number, but I thought I’d ask anyway. I don’t know that his answer convincingly persuades me one way or the other, but it does allow me to throw a tad more weight behind his theory that this is benign. A tad.

Bottom line: The only thing we know with any certainty is that my PSA continues to climb. Beyond that, it’s all a freaking guessing game.

On a related note, I’ve yet to hear from the radiation oncology department with an appointment for me. If I don’t hear from them tomorrow or Thursday (a crazy day at work for me), I’ll try to call on Friday to get on the calendar.


UPDATE:

About an hour after posting this, I came across this little gem of an article from 2005:

The presence of benign prostatic glandular tissue at surgical margins does not predict PSA recurrence

Key points:

We conclude that the presence of benign prostatic tissue at the surgical margins is not associated with adverse prognostic features and does not have prognostic relevance; therefore, we do not advocate reporting the presence of benign prostatic tissue at the inked margins as a standard part of the surgical pathology report on prostatectomy specimens.

Because benign epithelium at surgical margins is not correlated with postoperative PSA rises, postoperative PSA increases should in most cases continue to be considered “biochemical failure”.

Obviously, that’s not good news and certainly warrants more research.

This article from 2013 calls a few things into question:

Benign Prostate Glandular Tissue at Radical Prostatectomy Surgical Margins

Key point:

The most interesting finding of this study is the identification of Benign Glands at the Surgical Margins (BGM) after both Open Radical Prostatectomy (ORP) and Robot Assisted Laproscopic Radical Prostatectomy (RALRP) was not associated with recurrence, either biochemical or clinical, during a median follow-up interval of 49 months after ORP and 28 months after RALRP.

Extending followup further should clarify whether BGM leads to low, detectable levels of PSA that may not meet threshold for defining biochemical failure. This may be particularly relevant with the widespread availability of ultra-sensitive PSA assays. The routine use of ultra-sensitive tests after treatment has not been validated and remains controversial in clinical practice, and may be particularly true in patients at low risk of disease recurrence and potentially in those with BGM.

Within our cohort, longer follow-up may reveal detectable levels of PSA associated with BGM that may not reflect actual prostate cancer recurrence but rather a clinically benign elevation of PSA.

In other words, there’s more research to be done.

Day 2,703 – PSA Results

The bad news: My PSA continued its upward climb to 0.11 ng/ml. The good news: The rate of increase remained constant (and is still quite slow).

The result is exactly where my spiffy spreadsheet said it would be, so I’m not overly surprised. All that’s left to do now is wait for my appointment with the urologist on 19 April. I’ll have to do my best to let him speak a little before I assault him with my already prepared list of questions.

This result reinforces my belief that it’s time to bring a radiation oncologist into the discussion so I can get his or her perspective on salvage radiation therapy, especially regarding the risks of long-term side effects impacting quality of life and the likelihood of success.

More to come…

PSA 20180405

Month 88 – Ready for Next PSA Test

It’s not often that I want time to pass more quickly in order to get to my next PSA test, but this time it’s different for some reason. I’ve been really anxious to have 3 April roll around to get this over and done with. Perhaps it’s because I suspect that this test will be the tipping point that finally gets me into real decision-making mode.

Of course, I would prefer not to see my PSA continue its gradual climb, but I suspect that it will. My spiffy little spreadsheet predicts a value of 0.115 ng/ml, up from 0.10 ng/ml. Let’s see how accurate its predictive powers are.

On a related note, I’m fairing much better than I was in my last blog post. How did I manage the emotional turnaround? One word: Disconnect.

I disconnected from my prostate cancer forums and from the good old Google machine in an effort to maintain some semblance of sanity, and it worked. That doesn’t mean that I quit them altogether or didn’t read the occasional article that popped up in a news feed, but I stopped actively researching for now.

Sure, there hasn’t been a day that’s gone by where I haven’t thought about my predicament. That’s only normal. I just don’t dwell on it like I did four weeks ago, and that’s improved my mood and focus considerably. Depending on my PSA results (I should be able to retrieve them online on 5 or 6 April), my mood and ability to focus may go out the window again. My appointment with the urologist is on 19 April, and one point of discussion will be a referral to a radiation oncologist.

Between now and then, I’ll do my best to simply forget about it all. Wish me luck!

Day 2,596 – Doctor Visit

I met with my doctor this afternoon to review my increasing PSA results, and it went just about as expected. There’s increasing concern, but things are progressing slowly enough that we can continue on the four month test cycle for now. That means I’ll be doing this all over again in April.

There were a few reality check moments in the conversation, though. I’ll get to those in a moment.

One thing I need to learn to do is shut up—at least for the first part of the meeting with the doctor. I’m not very good at letting the doctor talk and offer up his thoughts and recommendations and then ask the questions that I have. I just launch into a barrage of questions based on the research that I’ve done and assault the poor guy. On a positive note, he really didn’t dispute anything that I told him nor did he tell me that I was completely out to lunch on certain issues.

We reviewed the success rate for SRT, with various studies showing it to be 35%-55% effective at being progression-free at 5 or 6 years. (Here’s one.) We also discussed the potential side effects of SRT, and he did seem to believe that the risks were lower than I thought they may be.

The conundrum of starting SRT early versus knowing where to radiate based on imaging came up as well. My sense was that he’d prefer to start SRT while the PSA is less that 0.2 ng/ml, and certainly before it reaches 0.5 ng/ml, assuming that the cancer remained in the prostate bed. Doing so, he said, offers the best chance for success. He suggested that, if we wait until it would be detectable on even the most sensitive imaging (which can’t detect anything reliably until the PSA hits the 1.5-2.0 range), that radiation would do little if any good at that point, as the cancer will likely have spread. Androgen deprivation therapy (ADT) would be the treatment option of choice at that point, and ADT is not curative. It only prolongs life (with substantial side effects impacting quality of life).

The reality check moment for me came with his comment about waiting too long to the point where SRT wouldn’t be effective, and that ADT would be my primary treatment option. That really was an, “Oh, shit,” moment for me. It’s very easy to sit here and speculate how I will act in hypotheticals, but at some point in the future, I am going to have to make real world decisions that affect my longevity and quality of life.

Based on my slow PSA doubling time (around 16 months), if my PSA progresses at its current rate, I’ll have 12 to 28 months to think about this and make my decision, based on whether I want to act if my PSA is around 0.15 or let it go all the way to 0.20. (See my “decision zone” in yellow below—yes, I had to geek out in my spreadsheet once again.) If I want to wait until it’s all the way to 0.5, I’ll have even more time.

Of course, one option is to do nothing. A study in 1999 showed that it took, on average, 8 years after PSA levels began to rise to reach metastasis, and another 5 years after metastasis to death.

The bottom line is that this is becoming increasingly real and that there will be some tough decisions in the next year or two. Of course, those decisions are mine and mine alone, and will be based on a variety of factors, not least of which will be my risk tolerance and any treatment’s impact to quality of life.

On that happy note, I wish you a Merry Christmas and a happy 2018! 🙂


Thanks, too, to those who took time to answer my questions in my salvage radiation therapy survey a few weeks ago. Your insights were quite helpful to me.