Eight Years

It was eight years ago today that I learned that I had prostate cancer. I had no idea then what would transpire in the days and weeks ahead, and I certainly had no idea that I’d still be dealing with it—and writing about it—eight years later.

You’ve heard me say multiple times that, once you introduce the word cancer into your vocabulary, it never goes away, even if the disease does. There will always be that little cloud called “fear of recurrence” that will follow you around for the rest of your days.

You’ve also seen me throw around the phrase cancer-free with each successive undetectable post-surgery PSA test. It’s hard not to. With each undetectable test result over time, you become more confident that you have this beat. You get lulled into a sense of routine and PSA tests become less scary. But because cancer is so insidious, there’s a danger in using words like cancer-free and cured.

My first indication of biochemical recurrence 54 months after surgery was an utterly unexpected slap upside the head. “Not so fast, fool!”

Ever since then, I’ve become a big fan of NED—No Evidence of Disease—as a better descriptor of how successful a treatment option has been because it accounts for that little recurrence cloud. Saying cancer-free or cure implies a finality. You’re done. It’s behind you. A decade later, you may find out that no, in fact, you’re not done with cancer.

Some may say that’s a rather dismal outlook on things and that we need to be optimistic. Perhaps. I prefer to be more realistic, obviously as a result of my own recurrence experience. And, just because I had recurrence, it doesn’t mean that others will as well. You may live the rest of your days with no evidence of disease and, if you do, more power to you.

There is good news. It’s eight years later and I’m still here, still pretty much fully functioning, and still writing.

After eight years, I’ve learned:

  • Be optimistic but understand that, with cancer, there are no guarantees.
  • Research, research, and research some more, but step away and take time for your mental health.
  • We may think that we’re fighting a battle, but the reality is that the cancer is in control and we’re simply reacting to the next treatment or test result.

My next PSA test will be on 6 December 2018 if all goes to plan. Will it remain stable at 0.11 ng/ml, or will it return to an upward movement? Stay tuned.

Work life and my travels over the last three months or so have been so busy that I haven’t thought, read, or researched about prostate cancer much at all. It’s been a pleasant break. But the one thing that has been lingering in the back of my mind is the trial of 68Ga-PSMA-11 PET/CT Molecular Imaging for Prostate Cancer Salvage Radiotherapy Planning [PSMA-SRT] at the University of California Los Angeles (UCLA).

I’m not sure that I would want to enroll in the full-blown trial itself, but I would like to learn whether or not I could get the scan outside of the trial, even if it’s at my own expense. I’d really like to know that we’re zapping where the cancer is located instead of blindly, based on statistics, if I do choose salvage radiation therapy. It’s something I’ll discuss with the urologist on 18 December 2018.

Month 94 – Educate Yourself

prostate-awareness-350It’s once again Prostate Cancer Awareness Month, and my message to men (and their partners) out there is a simple one: Educate yourself.

Educate yourself about the debate over PSA testing and whether it may be right for you. Educate yourself about the risk of getting prostate cancer given your family history. Educate yourself about how prostate cancer behaves, either aggressively or not so much. Educate yourself about the various treatment options that are out there along with their risks, potential side effects, and potential success rates. Educate yourself about the terminology used in discussing prostate cancer.

Most important, educate yourself on all of these things before you may ever be diagnosed with prostate cancer.

You’ll be better equipped to move forward should you be unfortunate enough to be diagnosed if you’ve learned about this insidious disease that’s more complex than most people give it credit.


On a related note, if you are diagnosed with prostate cancer, expect to be surprised at who is and who isn’t there to support you along the way.

It’s been interesting to me to see how some of my best support for dealing with prostate cancer has come from readers of this blog from as far away as Australia, New Zealand, Canada, various states in the U.S., or the United Kingdom. For that, I am truly grateful and want to simply say, “Thank you!”

PSMA-SRT Randomized Phase 3 Trial is now open at UCLA

Every now and again I’m asked to share information on my blog, and this was something that is of personal interest to me given my current situation. It’s from the UCLA Nuclear Medicine department and will likely be of interest to others as well.

They reference a couple of attachments in their email to me, but none were attached.


We have the pleasure to announce the opening of a Randomized Prospective phase 3 trial of PSMA PET/CT based salvage radiation therapy (PSMA-SRT) at UCLA Nuclear Medicine (NCT03582774).

https://clinicaltrials.gov/ct2/show/NCT03582774

This is the first randomized prospective phase 3 trial designed to determine whether PSMA PET/CT can improve outcomes in patients with prostate cancer biochemical recurrence.

PSMA PET/CT will be free of charge for patients (100% sponsored by UCLA Nuclear Medicine).

Patients who are planned for salvage radiation therapy (SRT) for recurrence after primary prostatectomy with PSA ≥ 0.1 ng/ml are candidate.

We will randomize patients to proceed with standard SRT (control arm 1) or undergo a PSMA PET/CT scan prior SRT planning (investigational arm 2).

Patients randomized to control arm 1 will not undergo PSMA PET/CT: SRT will be performed as routinely planned per discretion of the treating radiation oncologist. Any other imaging will be allowed for SRT planning if done per routine care.

Patients assigned to arm 2 will be scheduled to undergo a PSMA PET/CT scan at UCLA Nuclear Medicine (free of charge) prior to radiation therapy planning. DICOM images and reports of PSMA PET/CT scans will be delivered to the treating radiation oncologist.

The radiation oncologist may change the radiation plan depending on the findings of the PSMA PET/CT scan. That is, the treating radiation oncologist may use whatever dose, fractionation, and target volumes they choose, and may use concurrent ADT or not, at their discretion (please see the attached document for the radiation therapy management specifications).

The primary endpoint of the trial is the success rate of SRT measured as 5-year biochemical progression-free survival after initiation of SRT.

Patients will be followed by the UCLA Nuclear medicine research team for up to 5 years after initiation of SRT (phone/fax/secure emails with the treating radiation oncologist team and/or with the patient) every 3-6 months (routine PSA and imaging).

To enroll a patient:

  • All subjects must sign the UCLA IRB approved informed consent form (ICF, attached) before enrollment and randomization.
  • For UCLA patients, this will be done after a consultation with the UCLA Nuclear Medicine Team or the UCLA Radiation Oncology Team.
  • For all other patients outside of UCLA, this will be done after a phone consultation with the UCLA nuclear medicine research team. Signed ICF will then be obtained by fax or email.
  • The randomization number and assigned arm will be communicated by phone or email to treating physicians and patients one day after the enrollment.
  • Patients randomized to control arm 1 will not need to come at UCLA and will receive SRT per routine care at the treating radiation oncologist institution.

This trial represents a good opportunity for all the patients who cannot afford the out-of-pocket costs of a research PSMA PET/CT (at UCLA: around $2700).

Please try to spread the word as much as you can around you.

In advance I thank you very much for your collaboration.

Please don’t hesitate to contact us if you have any question:

Jeaninne Gartmann, Study Coordinator: JGartmann@mednet.ucla.edu
Jeremie Calais, Principal Investigator: JCalais@mednet.ucla.edu
Nicholas Nickols, Co-Principal Investigator: NNickols@mednet.ucla.edu

Best regards

Jeremie Calais MD MSc
Assistant Professor
UCLA Nuclear Medicine

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 2,823 – 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.

 

 

 

Month 92 – Sweating it Out

Literally. It’s been a god-awfully hot weekend here in San Diego. On Friday, the temperature downtown on the waterfront hit 97° F / 36° C and in Ramona, about an hour to the northeast of San Diego, it hit a toasty 117° F / 47° C! Yep. That’s correct. It’s not a typo.

Four wildfires broke out in the area Friday afternoon as well, with the nearest one to my house only 11 miles / 17 km away. A bit unnerving to say the least seeing as how rapidly those things can spread. (In 2003, the Cedar Fire spread about 25 miles / 40 km in about 16 hours thanks to a raging Santa Ana wind.) Thankfully, there was no such wind on Friday, and our amazing firefighters kept the fire to 10 acres / 40.000 m² but one home was lost.


I’ve been rather successful at not sweating over prostate cancer for a while now, and it’s been a good thing. In fact, so much so that I really don’t have much else for this post. Of course, that will change in three weeks when I go for my PSA test on 1 August.

So with nothing else to report, I’ll just leave you with a photo of some oak leaves in the sun near Big Bear Lake…

IMG_5293

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.