Hello Everyone. Been a little while since I've posted but, unfortunately, I am back ; )
I am 57. Had RP in October (2020). Pathology was G9 pT3bN1M0 with ECE, SVI and positive margin. Had 39 IMRT salvage radiation sessions with 18 months of ADT (Lupron and Zytiga). PSA was less than .05 and testosterone recovered into the 700s-- until September 2024 when PSA went to .06. It has been steadily climbing since and is now at .2. Just had the MR PET PSMA scan. I have a meeting with my medical oncologist next week, but received the report on my portal today which showed "mild focus of uptake in the left posterior iliac bone without definitive correlate, indeterminate. Otherwise, no suspicious PSMA tracer avid lesion."
My general question to you is what should I expect next? While it appears the scan is showing "something" at .2 (which my understanding is still early to be scanned and most times nothing will show up) assuming that the cancer is spreading to my pelvis area, what am I looking at for a next round of treatment?
I really appreciate the knowledge I have gained from this site over the years. Thank you!
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Harrisonhoyle
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I agree with GP24 and, in fact, I am questioning any PET at 0.2. Despite its specificity, as with any scan, there do exist “signal to noise” type issues with PSMA. What I really don’t like is that you may have used your PSMA scan early in the 2025 insurance cycle without getting the best information from it (i.e., I don’t know if insurance will help pay for another one).
All of this said, since there is a relatively aggressive PSA doubling curve, you are absolutely on point by getting ahead of the game and performing research on potential future treatments. Good luck! - Joe M
Well, assuming the PSMA scan is correct, TA has given you a couple links to discuss with your medical team. The EMBARK seems a good fit. If you have not, consider discussing with a radiologist the use of SBRT in conjunction with systemic therapy.
With that pathology, high risk PCa, generally you may want to discuss doublet or triplet therapy. The latter may not be in play as more and more the literature I see leans towards triplet therapy in high volume PCa.
Even in the EMBARK trial you have choices, ADT + ARI or just the ARI, discuss with your medical team.
When my PCa came back (again) in April 2023, my radiologist, oncologist and I discussed treatment options, We agreed on SBRT to the lone PLN identified in te scan, We also agreed systemic therapy was necessary because of my clinical data which was high risk. The question was, which ADT, for how long, whether to add an ARI, if so, when, for how long...
My starting position was SBRT + six months ADT, Orgovyx, no ARI.
My radiologist was ok w/that.
My oncologist was ok with the SBRT but wanted to do 24 months of Orgovyx + Xtandi.
What did we decide...SBRT, 12 months on Orgovyx, hold the ARI and use only if Orgovyx combined with SBRT did not drop PSA to undetectable within first three months, assess at 12 months, decide whether to come off treatment or conti8nue in three-month increments.
At 12 months we decided to come off treatment. Oncologist really wanted me to go the full 24 but agreed to stop at 12 since he knew I wasn't going to disappear, rather he and I would do labs and consults every three months and when the clinical data supported, go back on treatment. Here we are ten months later, PSA remains undetectable, T has returned, life is great.
Will my PCA come back, likely, when, I'm aiming for 3-5 years off treatment.
Keep in mind, my recurrence was in the lymph node, not bone, that may be a difference in how your medical team approaches their treatment recommendations.
Still, were it me, I would do SBRT and systemic therapy, for a defined period 12 months, decide from there. That systemic therapy would be Orgovyx, hold on the ARI, add if needed.
No two cases are the same, but on my second BCR at PSA 0.06 I had success with docetaxel plus prophylactic radiation of additional lymph nodes.
What is your oncologist's protocol for repeating PSMA scans when there is doubt about the result? I would probably want a scan every 3-6 months if there was a suspicious spot that might be a tumor that can be radiated.
I'm sure you know this, but my understanding is that the definition of BCR, while hotly debated, typically is a PSA that has risen above at least 0.2 for men after RP. Perhaps a distinction without a difference. Sorry this sounds rather nit picky, but I do think terminology is important.
I have recently gone from undetectable to detectable PSA (0.04 ng/ml I believe at last reading) and to me, like you it sounds like, that feels more meaningful than an arbitrary marker of biochemical recurrence. That said, I take BCR to be a medical term used by oncologists/urologists which means, typically, PSA > 0.2.
Fair enough on the technicality. For my case, my MO's and I considered 0.06 to be a recurrence (regardless of whether it was "biochemical") because it was doubling in 4-5 months and it had followed 7.5 years of undetectable PSA.
I thought briefly about waiting for a scan to reveal something to radiate, but the best scan at the time (in Phoenix) was before PSMA was available and required PSA to be 2.0. I didn't want to give my cancer another year or more to grow big enough to see on a scan (and spread further microscopically), and everything I've heard about treatments is that they tend to be more effective the earlier they are delivered.
That's when I added Mark Scholz to my medical team, and he suggested docetaxel plus radiation plus Lupron as an aggressive treatment plan. It gave me another 4+ years of undetectable PSA with very minimal side effects.
Subsequently, with the availability of PSMA scans, I was more comfortable waiting for my PSA to get high enough to show a tumor, which happened at PSA 0.45. Upon radiating that tumor (without any ADT), my PSA is now undetectable again without any ADT.
By the way, after my RP I waited until my PSA was 0.20 before I got salvage radiation. Knowing what I know now, I wish I would have had the salvage radiation earlier when my PSA reached 0.12.
I'm familiar with Dr Scholz. And had a couple consults with him. After seeing several oncologists, his treatment plan was definitely the most aggressive of the bunch, and every oncologist I've seen since has been surprised at his recommendations. Maybe he's right and the other guys are wrong. It's very hard to deal with that discrepancy.
I've been kicking the can down the road a bit. But oncologists are supportive of that approach because my PSA is low. Good to hear other people's stories ...
By the way, I think doubling time is only statistically significant at such low PSA numbers (0.06) if you're measuring out 3 digits (0.062 e.g.) . Otherwise there's a lot of noise. Did you go out 3 digits?
Scholz has done only prostate cancer for 30+ years, and I find him deeply committed to treating every case as unique and achieving the best quantity and quality of life possible for each patient. He did not replace anyone on my team but was a great addition to my team.
Discuss with your MO and get a feel for his/her reading of the scan. You have an aggressive cancer, you may want to inquire about triplet therapy. You have several options, see what your oncologist recommends and go from there.
Hey hoyle, get on the ballyle.... Please update your bio for us. You can glean most of it from your posts (copy and paste) that makes it easy peasy. Thank you sir and keep posting!!!
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