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Recurrence post Tulsa Pro

Posted by bjroc @bjroc, 5 hours ago

Married 33 years, two kids, and don't want PCa being a real drag on my life and family. Here is my history, plus where I am today, plus my list of procedures I find out there. Note I am an engineer who developed medical devices so I look at things in my own way sometimes.

2021 - Prostate MRI shows Pirads 5 lesion, lesion biopsied. Local got 3+4. Johns Hopkins/Dr Epstein re-grading: Gleason 3+3=6, Grade Group 1. BRCA2 negative. Decipher 0.48. Prostate 110 cc
2022 - Mayo Clinic MRI reports Pirads 2. No biopsy.
2023 May - at Mayo Clinic. PSA rises to 16. A new biopsy positive - and requires treatment. Opted not for RP or radiation due to BPH plus PCa. American Cancer Society - TNM stage IIc (one core had 0.2mm or super small GL 8, but really 3+4 in core that actually hit stuff )
2023 November - did Tulsa Pro/Dr Scionti. No problems, impairments or incontinence.
2024 - PSA at 3 to 4
2025 January - MRI shows no cancer present, BPH still present in remaining tissue causing PSA. Prostate at 87cc
2025 July - Did PAE to help with BPH
2026 Sudden jump in PSA to 7. MRI shows suspect spot, biopsy at original small hospital said 4+3, my local university downgrades to 3+4. PSMA says contained. Dr Scionti turns me away, says scar tissue and cavity from Tulsa Pro may cause issues. Prostate size on biopsy listed as 46 cc.

What I think happened with Tulsa Pro
Tissue on the opposite pole of where they are ablating the prostate tissue compresses, then it takes time to rebound but they can't ablate it really since it is pressed up against the prostate capsule apparently. Pre-procedure my doctor wanted to ablate roughly 75% so he said, verbally he told me he got 2/3 or something post procedure, but all the imaging shows at most 40% was taken out. This is a new issue with Tulsa, docs would be smart to hear what is going on, that is the tissue during procedure presses up to the wall and doesn't get ablated. Usually on opposite wall but some might happen anywhere since they are pushing probes and all kinds of things around and the tissue doesn't just spring back. Tulsa Pro is "buggy", it is a good thing but bugs are in the system.

My initial look at other procedures, and how I list them (not all available to me at this point)
Maintain sexuality end at top, Definite cancer cure as priority at bottom. Gap means it isn’t that close to previous one

Maintain sexuality (top of list)
Active surveillance
(gap)
Focal Brachytherapy
Focal Tulsa Pro & Focal HIFU
Nanoknife/IRE or irreversible electroporation
Vanquish
Cryo-ablations – not done much anymore
(theory only) Ablative PSMA – attach a kill to PSMA rather than a tracer for scanning. It could be done but is NOT offered in USA – other places like Europe it has been tried by a wealthy few.
(gap)
Point A
Brachytherapy alone
Proton therapy alone (sometimes called IMPT but not that often) including Varian Probeam + similar, and traditional large scale proton such as Hitachi and others.
Full gland Tulsa Pro
(gap)
MR Linac – MR based adaptive photon, also ViewRay which went out of business.
(gap)
Varian Truebeam and Adaptive ones like Varian ETHOS – CT based. Some places don't think the ETHOS is that great.
(gap)
SBRT cyberknife type or photon
(gap)
IMRT
Point B
Point C
(ADTs most desirable to least desirable: 1 Orgovix, 2 Firmagon, 3 Lupron)
Point A to Point B with ADT for 4 months
Point A to Point B with ADT for 6 months
Point A to Point B with ADT for 12 months
Point A to Point B with ADT for more than 12 months
Point D
Repeat Point C to Point D with less desirable ADT
(gap)
External Beam
(gap)
Prostate removal
Prostate removal, plus radiation, plus extended ADT
Cancer Curation (bottom of list)

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

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jeff Marchi | @jeffmarc | 2 hours ago

Looks like you have run into what Dr. Cooperberg Had to say about focal therapy.

At the 11/1/2025 PCRI conference the following was said by Matthew R. Cooperberg, MD, MPH Urologic Oncologist UCSF

What about focal therapy?
* The energy modality matters much less than the accuracy of the imaging - which is not there yet.
* Overall focal therapy is associated with minor side effects, but high rates of recurrence both in- and out-of-field.
* Focal therapy is not really a replacement for surgery or radiation; it is better considered an adjunct to active surveillance

You have put on a list of a whole bunch of different treatment techniques. You really have given no information about what your preferred next treatment would be. There are a lot of options. SBRT radiation with a proton machine would Keep your sexual function for a while, But any radiation can burn up the nerves that you can get spared when doing surgery. For some people that means the loss of the ability to get an erection over time. The thing is there are solutions for that, The implant is very popular and works quite well to continue getting a good erection.

You could go focal again, It might take care of it.

Your PSA jumping to 7 does say you need to do something. As you know, your BPH problem could be solved by surgery, But that has a lot of other issues, can they spare the nerves for example?

Too many options, What do your doctors have to say? Are you willing to go anywhere to get the treatment you want?

REPLY
1 reply
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bjroc | @bjroc | 1 hour ago
In reply to @jeffmarc "Looks like you have run into what Dr. Cooperberg Had to say about focal therapy. At..." + (show)
Profile picture for jeff Marchi @jeffmarc

Looks like you have run into what Dr. Cooperberg Had to say about focal therapy.

At the 11/1/2025 PCRI conference the following was said by Matthew R. Cooperberg, MD, MPH Urologic Oncologist UCSF

What about focal therapy?
* The energy modality matters much less than the accuracy of the imaging - which is not there yet.
* Overall focal therapy is associated with minor side effects, but high rates of recurrence both in- and out-of-field.
* Focal therapy is not really a replacement for surgery or radiation; it is better considered an adjunct to active surveillance

You have put on a list of a whole bunch of different treatment techniques. You really have given no information about what your preferred next treatment would be. There are a lot of options. SBRT radiation with a proton machine would Keep your sexual function for a while, But any radiation can burn up the nerves that you can get spared when doing surgery. For some people that means the loss of the ability to get an erection over time. The thing is there are solutions for that, The implant is very popular and works quite well to continue getting a good erection.

You could go focal again, It might take care of it.

Your PSA jumping to 7 does say you need to do something. As you know, your BPH problem could be solved by surgery, But that has a lot of other issues, can they spare the nerves for example?

Too many options, What do your doctors have to say? Are you willing to go anywhere to get the treatment you want?

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@jeffmarc

Thanks for followup.

As mentioned somewhere in there I was turned away for further Tulsa Pro, mentioned reason was scar tissue + cavity area created by first tulsa pro and concerns that energy would get deflected from the scar tissue and cavity area. So no luck so far on tulsa repeat.

My next preferences are the either brachytherapy alone, or, proton SBRT which I call either of the Varian Probeam (and similars like Mevion I think it is called) or of course regular proton like Hitachi which is a larger scale proton system compared to the Probeam. I was in line in 2023 for Proton at Mayo Rochester, but after two months they said no slots available for foreseeable future. I think they bought the Probeam in Rochester since, but not sure. I got Tulsa Pro in FL when they had no slots on proton machine, anyway my prostate is smaller now so that is good.

I am looking all over, so much willing to travel and have done lots of travel for care already. I live in West NY, but have been at Mayo Rochester and had Tulsa in Florida.

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