Month 97 – Researching and Evaluating What’s Next

Last week’s bump up in my PSA level certainly knocked me from my blissful state of denial back into reality. I was surprised by how emotional I got about the results. On the good side, however, the emotions lasted only a few hours and were pushed aside by the demands of work.

After work, I wrote the study coordinator at UCLA about the gallium 68 (Ga 68) PSMA-11 PET/CT trial. I was pleasantly surprised when I received a reply within 18 hours.

In a nutshell, they’re still accepting participants to be randomized into two arms of the trial. In one arm, they will use the Ga 68 PSMA PET/CT imaging to attempt to detect the cancer in patients about to undergo salvage radiation therapy; the other arm just begins salvage radiation therapy without the benefit of the imaging. Of course, UCLA covers the cost of the imaging for those in the first arm of the trial.

Interestingly, they do have another related trial where the patients “pay around $2,800 USD, but everyone gets the scan and there are no obligations about what treatment patients should do next.” That has tremendous appeal to me, but I did send some follow-up questions on Friday.

Specifically, I wanted to know if they had any preliminary results that showed the rate of a positive scan result with a PSA of 0.13 ng/ml. If you look at the information in my previous post about imaging, you’ll see that the detection rates for a PSA of less than 1.0 ng/ml ran from 29% to 67% (median 51.5%). I suspect that the further one’s PSA is from 1.0 ng/ml, the less likely it is that you’ll detect the cancer cells.

Now I’m not trying to be penny-wise and pound-foolish, but $2,800 is a decent chunk of change to shell out for something that may have very little chance of doing what it’s supposed to given my PSA level. I mean, really—that’s the equivalent of a sweet Gitzo carbon fiber tripod with ball head and a new lens for my landscape photography. 🙂

Of course, I could wait for my PSA to get closer to 1.0 ng/ml, but that’s pretty scary.1 The longer you wait, the more the cancer cells replicate and spread and, by then, it may be too late to just zap the cells in the prostate bed (assuming that’s where they’re still at right now).

Because Ga 68 PSMA PET/CT is not yet approved by the U.S. Food and Drug Administration, I did ask the coordinator if there were any adverse events or side effects that have been identified with the imaging trial so far. That would be nice to know before injecting some unapproved glow-in-the-dark juice into my system.


I’ll get my urologist’s take on all this when I have my next appointment on 18 December. I’ll ask for another referral back to the radiation oncologist but, while that’s happening, I’ll likely email the radiation oncologist that I met with in May and ask for his thoughts on the Ga 68 PSMA trial.

While salvage radiation therapy has certainly moved higher on my list of things to consider, I’m still concerned about the potential long-term side effects impacting daily quality of life as a result. That will definitely factor into my decision-making process.

More to come…

Footnote:

1 – I ran the trend function in my spiffy PSA tracking spreadsheet and, using a linear trend based on my historical increases, it predicts I wouldn’t hit 1.0 ng/ml until December 2045. I’ll be just shy of my 88th birthday—or dead—by then. Perhaps I don’t need to sweat this after all… 🙂 (Yes, I realize that the trend won’t remain linear over time.)

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.

Dr. Thomas Hope: New Directions in Prostate Cancer Imaging

Here’s an interesting article about the current state of imaging that can be used in the detection and treatment of recurrent prostate cancer:

https://wp.me/p4yQj7-yk

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 95 – Road Trip

I had an idea for the topic of this month’s post but I really never fully developed it because I was off gallivanting up and down California, Oregon, and Washington over the last week or so on an overly ambitious road trip. I’ll work on fully baking my idea for a future post but, in the meantime, I’ll leave you with a link to my travel blog where you can check out autumn in the Eastern Sierra Nevada mountains and the Olympic Peninsula of Washington. It was a great escape from all things work and cancer.

Enjoy! I sure did.

Chaotic and revolutionary progress in the diagnosis and management of prostate cancer

Here is a good summary of where we’re at in diagnosing and treating prostate cancer.

https://wp.me/pdkiw-6Sf

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.