One thing that I’ve learned along this journey is that every doctor has his or her own take on the situation and what should be done, and very few of those opinions match. They can’t even agree on standard definitions.
This afternoon’s meeting with yet another urologist proved to be interesting at best and a tad frustrating at worst.
He was a younger doctor but the interesting thing was that he held to the belief that I haven’t had a biochemical recurrence yet and won’t until I hit the magical 0.2 ng/ml. I was a bit taken aback by that given what everyone else has been telling me for the last two years. He also talked about the newer ultra-sensitive PSA tests, but hung on to the definition that anything less than 0.1 ng/ml was “undetectable.” In his mind, my PSA at 0.13 was “very low.”
We talked at length about my PSA doubling time, and that was one area that we came to consensus on. That having a PSADT of more than two years was a good thing. He seemed quite interested in seeing the results of the Memorial Sloan Kettering PSADT calculator, which had my doubling time at 35 months (based on only four data points because their calculator accepts only those values >= 0.1 ng/ml). (I also had my PSA tracking chart printed out and sitting on his desk when he walked in.)
I asked him about what his experience was with dealing with the long-term side effects of salvage radiation therapy as a urologist—how frequently they occurred and what severity they were. He went through the list of things that I had already known, and said in his “whole career” he had seen only three or four cases that were significant. (Note: His “whole career” spanned all of six years. I’ve had cancer 8 years.)
Lastly, we talked about the Ga68 PSMA imaging trial going on at UCLA. It was clear he was aware of the research, but wasn’t at all familiar with the details or requirements of the trial. I didn’t expect him to be well-versed on the topic, but it was clear that I knew a bit more about it than he did, especially when it came to the requirements to participate, (I didn’t tell him that I had actually contacted UCLA.)
He did ask me if I had a PSA threshold in mind where I would want to take action when it comes to salvage radiation therapy. In my mind, if we get into the 0.15 or above range and the PSADT starts to shorten, I’ll have to strongly consider the next steps. But I did bring up the Freedland study that shows, with my numbers, I can do nothing and have a 94% chance of being around in 15 years.
Normally, I don’t mind seeing younger doctors because sometimes they’re more familiar with the latest research and current treatment philosophies than their older counterparts. I’ll take his input with a grain of salt considering how he’s not in line with the thinking of some of the others that I’ve seen in the last year or two.
In the end, we agreed to kick the can down the road and do another PSA test in four months in April 2019.
I’m still interested in speaking with a radiation oncologist about this again. I may try emailing the one I saw in May or just ask for another referral after the beginning of the new year.
It was a bit of an odd consult. I’ll just forge my own path forward and we’ll see where that leads. In the meantime….
Wishing you all a very Merry Christmas and the healthiest, happiest New Year possible!
6 thoughts on “Day 2,960 – Meeting with the Urologist”
Hi Dan, I was sorry to see your PSA had gone up. From my experience I can offer you a different perspective on PSA results. When I was diagnosed with PCa in April 2017 I had no specific symptoms but I had a work colleague who died of it in 2008 and an acquaintance at a local bowling club who was dealing with it in 2017. Their experiences made me more alert to the possibility. Thanks for what you do. Your posts raise awareness and I and others learn from your posts. Anyway, my GP(MD) was quite critical of PSA results and having given me a DRE then postponed my PSA blood test for about 10 days because apparently a DRE can produce a spike in PSA. My GP pretty much made the choice of having a PSA test or not my decision as her examination of my prostate did not feel suspect to her. Like you I read as much as I could about PCa and PSA before my blood test. Anything above 0.2 was suspect, depending on age. 20 was very high. Mine turned out to be 900!!. The irony was that I felt better physically then than I had for years. Tests showed that I had locally advanced, non-metastatic PCa affecting my seminal vesicles and abdominal lymph nodes. I was promptly put on ADT and had six sessions of chemotherapy. My PSA dropped to 0.2 and has remained there for the last 18 months. So like you I live between 12 weekly PSA tests. Unlike you, there was never any possibility of cure whereas your radical prostatectomy may have cured you. Two medical oncologists have told me my PSA will rise. It’s not a matter of “if” but of “when”. PSA Doubling time is as you write critical. You write that the Freedland study gives you a 94% probability of surviving 15 years or more without any treatment. Those seem pretty good odds. I don’t know at which point you should seek further treatment. The sensitivity of the PSMA trial would appeal to me to help me make up my mind. Best regards Charles.
Thanks for your comment and insights. Sorry to hear that you’re dealing with a more advanced form of this beast. I hope that the treatment options that you’re pursuing keep it at bay and leave you with a high quality of life.
I think anyone dealing with this disease knows how frustrating it can be when it comes to the whole discussion about PSA tests. The experts can’t even come to a consensus, so those of us affected have to rely on our own research and instincts.
Other than doing some more homework on the PSMA imaging and having conversations with radiation oncologists, I really don’t know what direction I’ll go in yet. Perhaps I’ll gain some new insights from my research.
Wishing you all the best this holiday season! —Dan
Thank you so much for sharing your experiences. We are in the immediate post-surgery stage, and your earlier writing has helped us to know what is ok/what to expect and has alleviated many of our anxieties. We will continue to follow you and wish you only the best.
Thank you for your kind words, Nancy Jane. I wish your partner a speedy and full recovery!
I had a recurrence of prostate cancer last year after a prostatectomy in Oct. 2016. (Gleason 8&9). My PSA doubled from .1 to.2 just 2.5 years after successful surgery w 30% nerve bundle also removed.
I just got the good news that my first post radiation PSA test showed a 70% reduction, from 0.23 last July to 0.063. I haven’t met w my oncologist yet but his nurse says this is a “very good” result. I hope this information helps in your own journey.
Laguna Niguel, CA
Thanks for sharing your story. It does help to have different insights from patients across the spectrum. Just curious if you’ve had any lasting post-radiation side effects?