A review of PET Imaging for Recurrent Prostate Cancer

This is a quite informative paper from Practical Radiation Oncology, giving a good overview of the newer imaging technologies being developed to identify the location of recurrent prostate cancer before beginning salvage radiation therapy.

Prostate cancer–specific PET radiotracers: A review on the clinical utility in recurrent disease

I’ll comment in a separate post on where my head is at after receiving my latest PSA results.

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.

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.

 

 

 

Life After Radical Prostatectomy: 90 Months Later

So it’s been 90 months since my radical prostatectomy. How am I doing?

Status

With a continuously rising PSA, it’s time to face that reality that I have a biochemical recurrence and the cancer is back. Now it’s just a matter of trying to figure out what to do about it. Far easier said than done.

Emotions

Whether consciously or subconsciously, I came to terms with the idea of recurrence a while ago. What I’m really struggling with right now is how I’m going to make the decision as to whether to proceed with salvage radiation therapy now, later, or even at all. I have no idea how I’m going to make that choice and be satisfied that it’s the right one. When I chose surgery and my surgeon after my initial diagnosis, I was completely satisfied with my choice, had no regrets, and never second-guessed it once. I’m lacking that confidence right now.

Incontinence

On the whole, I’m still doing well with incontinence—well into the mid-90% dry range. I have noticed, however, a few more unexpected minor leaks popping up than what I’m used to. That’s concerning, especially if I choose salvage radiation therapy and its potential side effects.

The leaks usually happen when I’m more physically active (especially lifting something heavy), so if I know I have that kind of activity planned in my day, I’ll throw a thin pad in my underwear for good measure.

Sexual Function

It seems that my ability to achieve decent erections has regressed a little, too. I’m probably more in the 70%-85% range now. Good enough to achieve an orgasm, but questionable for much more than that. Of course, if I have salvage radiation therapy, those numbers will likely drop significantly, especially because only one nerve bundle was left behind.

Summary

My first ever visit to a radiation oncologist in May was a defining moment for me. It certainly took its emotional and physical toll from me. I was so mentally and physically exhausted from the research and constant thoughts that I just had to stop and step away. I know I have a major decision ahead of me at some point in the future but, for now, I’m content with not thinking about it at all at the moment.

I know I’ll get snapped back into reality when I go for my next PSA test on 1 August 2018.

Month 91 – Random Meetings and Thoughts

It was bound to happen. The other day I ran into my radiation oncologist in the little convenience store in the hospital where both of us work. It was kind of funny. There was his initial reaction when he saw me and recalled who I was, “Hey, howyadoin’?” he asked, followed quickly by a slight tinge of panic wondering if I was going to assault him with a battery of follow-up questions right next to the granola bars and packaged nuts. I didn’t. “Hi, Doc! How are you?” is all I replied, much to his relief, I’m sure.

A few days later, I was back in the convenience store standing in line behind a bearded 30-something guy in black scrubs. I commented, “Black scrubs? I don’t know that I’d want you coming into my room if I were a patient here. It would look like the Grim Reaper is coming to pay a visit.” (For being a terminal introvert, I can be good at striking up conversations with complete strangers.) He laughed and we chatted some more. “Where do you work?” I asked. “Radiation Oncology, so I suppose the black scrubs take on added meaning there.” He was one of their radiation technicians, and I didn’t bother to tell him that he may be zapping me someday soon.

All of that has highlighted me to resolve another internal debate that I’ve been having with myself: Whether or not to inform my coworkers of my recurrence.

I work for a small nonprofit that has a staff of 22 employees, plus, more and more staff members at the hospital know me because of the reach that our organization has there. In essence, we’re family. If I do choose to get zapped 75 steps away from my office, the chances of someone I work with seeing me entering or leaving Radiation Oncology are pretty good. “Surprise!”

Beyond that, I questioned why I want to share this with my work family. To have more shoulders to lean on? To let them know why I’m so distracted and distant some days? If I’m perfectly honest with myself, it’s a little bit of all of that. But I also know from experience that, when I shared my story with my coworkers shortly after being initially diagnosed, a burden had been lifted from my shoulders. “A burden shared is a burden halved,” someone once said, and there’s truth in that.

I was all set to share my story until tragedy struck when one of our staff members passed away unexpectedly. That put my little plan on pause, appropriately so.

Part of me is thankful for the pause. On reflection, I may be putting additional indirect pressure on the decision-making. If I’ve got 44 eyeballs looking at this introvert in anticipation of a decision, that could be nerve-wracking. Perhaps it’s best to wait to share my story until after I make the decision, that way there won’t be the second-guessing that comes when people question your choice, if not overtly, at least by that puzzled glance.

Speaking of the decision, I don’t know that I’m any closer to it. I continue to research for a few hours each week, reading articles and journals, and I’m coming to the conclusion that I probably have enough information on the treatment and its side effects to make the call. I’m not going to find that magical “a-ha” paper that swings the decision one way or the other.

One of the hang-ups that I have though, is the lack of ability to determine where the cancer is at my current PSA levels. I really would like to know with a high degree of confidence that we’re zapping in the right place. Yet, one article sticks in my mind where the author wrote, “That would be a self-fulfilling prophecy: by waiting for the cancer to put out more PSA [so the imaging could detect it], one is virtually ensuring that the cancer will grow, spread, and possibly metastasize.” Food for thought.

In my head, I’m thinking we wait for the August PSA results and go from there. Perhaps take a nice autumn vacation and, if I choose to get zapped, do so not long after I return. Or not. (Definitely the vacation part, though. I need that!)

Day 2,758 – Heads or Tails

IMG_5341That’s what it’s coming down to, or so it seems. Using the ultimate “executive decision-making aid” to determine what I’m going to do.

What brought this on? Another email exchange between me and my radiation oncologist.

Over the weekend, a few more questions popped into my head and I wanted to get his response. Yesterday, I fired off an email asking if any advances in radiation delivery technology or methods in the last 10-15 years improved the side effect outcomes over the studies he shared with me. In short, the answer was no—there were no appreciable changes.

Of greater interest to me was his interpretation of the Freedland study, which shows that I can do nothing and have a 94% chance of being around 15 years from now. His response:

I am familiar with the study you included, and it is one of many retrospective reviews on this subject. The authors preformed a retrospective review on a total 379 patients over period of 18 years from 1982 – 2000. Therefore, although the data are valuable and contribute to the literature, I consider it (as well as the many other studies on this subject) thought provoking.

Perhaps I’m reading too much between the lines, but his last sentence translates into “skeptical of the study” to me. He continued:

The bottom line is that you have a biochemical recurrence with a low, slowly rising PSA.  Do you need radiation treatment now, sometime in the future or never?  I don’t have a definitive answer to that question, but there are data to suggest “the earlier the better” and other data to suggest treatment might not be needed at all.  It depends on your point of view…

Am I upset by that response? Not really. It’s pretty much what I expected it to be, and that tells me that my research has been quite thorough. He and I both landed at the same place.

Will it make deciding my course of action any easier? Hell no. But it does reinforce that it’s my decision, and my decision alone.

Now where did I put those Eisenhower dollar coins again???

Day 2,754 – Researching Salvage Radiation Therapy—Again

It’s 7:30 p.m. on the Saturday of a three-day holiday weekend in the United States, and I’m reading articles on salvage radiation therapy. Who said prostate cancer wasn’t fun?!?

I did come across this informative article from the Journal of Clinical Oncology published in May 2007:

Predicting the Outcome of Salvage Radiation Therapy for Recurrent Prostate Cancer After Radical Prostatectomy

The authors set out to create a nomogram that predicted the “probability of cancer control at 6 years after SRT for PSA-defined recurrence,” and they speak at length about the variables used in their nomogram, as well as its limitations.

I plugged my stats into their nomogram and came up with a 70% probability that I won’t see any progression at six years. That’s right in line with what the radiation oncologist told me. (The nomogram is a little clunky to use, as it’s a graphical scale that you have to draw lines through to determine your score. I’d much rather have fields to enter on an online form that calculates it more precisely.)

There was one paragraph that talked about side effects of SRT that really caught my attention:

The potential for morbidity resulting from radiation therapy argues against its indiscriminate use in the salvage setting. Mild to moderate acute rectal and genitourinary toxicity is seen in the majority of patients, but the reported incidence of acute grade 3 to 4 complications is less than 4%.4,6,9,14,21,36 Late grade 1 to 2 rectal and genitourinary toxicity are reported in 5% to 20% of patients, and late grade 3 toxicity is less than 4%.3,4,6,8,11,21 Although rare, pelvic radiation therapy for prostate cancer is associated with an increased risk of secondary pelvic malignancies.40 Postprostatectomy radiotherapy does not appear to significantly increase the risk of urinary incontinence,3,4,6,14,21,41 but we must presume that it has some adverse effect on erectile function on the basis of the data from primary radiation therapy series. The nomogram can be used to restrict SRT to those patients most likely to benefit and avoid treatment-related morbidity in those predicted to have a low probability of a long-term benefit.

That 5% to 20% range for late grade 1 to 2 rectal and genitourinary toxicities made me go, “Hmmm…” Not quite the “single digits” probabilities that my radiation oncologist said.

After reading a number of the articles in the footnotes and listed on the “We recommend” column of the website, it’s apparent from most of them that starting SRT early is the way to go. It’s also apparent that the probability of being progression free at six years varies considerably from the 30% range to the 77% range depending on your PSA doubling time, PSA level, Gleason score, time to recurrence, and post-surgery pathology. But we already knew that.

This also caught my eye:

A rising PSA alone is not justification for initiating salvage therapy because patients with PSA recurrence are as likely to die as a result of competing causes as they are of prostate cancer.1 To determine the need for salvage therapy, we suggest using one of several existing tools to estimate the probability of developing metastatic disease or cancer-specific mortality.2,22,23 Patients at high risk of progression to these clinically significant events and/or a long life expectancy should be assessed for SRT using our nomogram.

Digging into the three footnotes listed, two are studies that I’ve already referred to in earlier posts—Pound and Freedland—and both suggest that it could take a very long time for the cancer to metastasize. The third study referenced, Predictors of Prostate Cancer–Specific Mortality After Radical Prostatectomy or Radiation Therapy, also reinforces that notion.

We’re right back where we started from: Zap early with an average 50-50 shot of it being effective (with the 4%-20% chance of long-term side effects) or do nothing but monitor.

I may send some of these links to my radiation oncologist on Tuesday and ask, “Which of these studies do you put the most stock in, and why?” and see what he says. Could be interesting.

Well that’s enough fun with cancer on a Saturday night. I’ll keep you posted on any new research findings or developments with the doctor.

Day 2,747 – Side Effects of Salvage Radiation Therapy

During my conversation with the radiation oncologist on Thursday, a big part of the discussion was on the long-term side effects of salvage radiation therapy. He stated that the probability of long-term urinary or rectal side effects was “in the single digits.” That reinforced my own understanding, but after the meeting, it occurred to me that we didn’t talk about the severity of those side effects in any detail.

I fired off an email to him on Friday asking, in essence, of those with long-term urinary and rectal side effects, what percent of those are mild, moderate, or severe?

He replied in a matter of hours and said that he couldn’t respond using the terminology in my email (I gave him definitions of what each of those meant in my own mind). Instead, he referred me to the Common Terminology Criteria for Adverse Events (CTCAE) used in standardizing terminology used in research across the globe. He referred me to “cystitis” and “proctitis” to see their definitions for grades 1 through 5. (Grade 1 was the least impactful; Grade 5 was typically death.)

The doctor also shared side effect data directly pulled from the manuscripts of 3 major randomized trials in post-prostatectomy patients. He didn’t provide the links—just the text—so I used the Google machine to come up with the links/articles. It’s interesting to note that all three are focused more on adjuvant radiation therapy than salvage therapy, but I suppose getting zapped for one is pretty much the same as getting zapped for the other.

 

Bolla et al, Lancet, Vol 366, Aug 2005

Late effects of rectal and bladder grade 3 or higher were only slightly increased in the XRT group vs. the observation group: 4.2% vs. 2.6%.

Wiegel et al, JCO, 2009

There was only one event of grade 3 toxicity (bladder). No grade 4 events were recorded. There were three events (2%) for grade 2 genitourinary adverse effects in the RT arm compared with none in the other arms. In addition, two grade 2 GI adverse effects (1.4%) were seen in the RT arm compared with none in the other arms.

It was interesting to note that the doctor omitted the second half of that paragraph from the original study:

Altogether, the cumulative rate of adverse effects for bladder and rectum (≥ grade 1) was 21.9% in the RT arm and 3.7% in the wait-and-see group (P < .0001; Appendix Fig A2, online only). One urethral stricture occurred in arm A and two occurred in arm B. Incontinence was not assessed, because it is not mentioned in the RTOG/EORTC scoring scheme.

Thompson et al, J Urology, 2009

We conducted a companion quality of life study in 217 men randomized to S8794 with assessments at baseline, 6 weeks, 6 months and annually for 5 years. A strength of this analysis was the inclusion of a 6-week assessment, designed to capture the side effects of radiotherapy at their peak. Tenderness and urgency of bowel movements were significantly more common at the 6-week point (47% vs 5%) in the radiotherapy group but by 2 years there was little difference between the groups. Urinary frequency was more commonly seen in the radiation group but there was no difference in the rate of erectile dysfunction (common in both groups) between groups. Global assessment of quality of life, while initially worse in the adjuvant radiotherapy group, became similar by year 2 and was increasingly superior in the radiotherapy group during the following 3 years. This gradual switch toward a superior quality of life in the adjuvant radiotherapy group should be examined in the context of the increased rates of PSA recurrence, salvage radiotherapy and hormonal therapy in the observation group, all of which have negative impacts on quality of life.

I’ve only skimmed the full studies at the moment, and I’ll come back to them in a day or two. On the surface, however, the numbers have eased my fear of long-term side effects a tad.

Right now, I just need to get away from the topic for a few hours and have some fun. Time to go out and play…

Stay tuned.