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Recurrence post Tulsa Pro
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)
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Updated a bit here
List of treatments. Maintain sexuality at top, Cancer cure as priority at bottom (may not be best terms)– could also say left and right or other terms possible for top and bottom of list. Gap means it isn’t that close to previous one. Added what I tried and where I am, info usually in a backet ( x ).
Maintain sexuality (top of list)
-(did for 2.5 years) Active surveillance
(gap)
Focal Brachytherapy
Focal HIFU
-(did but lasted 2.5 years) Focal Tulsa Pro
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
(currently turned down for) Full gland Tulsa Pro or HIFU
(These next two are where I am having appointments for)
*Brachytherapy alone
* Proton therapy (sometimes called IMPT) & so called SBRT Proton alone. This includes Varian Probeam, or Mevion + similar, or large scale proton such as Hitachi and others.
(gap)
MR Linac – MR based adaptive photon, MR Linac consortium/Phillips, MRIdian ViewRay, Elekta.
(gap)
Varian Truebeam and Adaptive ones like Varian ETHOS – CT based, or CT with adaptive. 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
External Beam
(gap)
Prostate removal
Prostate removal, plus radiation, plus extended ADT
Cancer Curation (bottom of list)
@brianjarvis
That is roughly what I did here, with a lot of side info not mentioned of course, but the list contains roughly what you did. I really like proton, it is a real possibility and one I tried to get in 2023 but no slots were available at that time at Mayo where I was going at that time, maybe if I waited more months (I waited two months already roughly speaking and they just couldn't get me a dedicated slot or maybe my insurance was balking too, not sure). Anyway the new Probeam systems are really great. Brachy is old, but some have taken it to new levels by doing it in modern ways and so on.
@bjroc Perhaps I am reading your post incorrectly, but ‘cancer cure’ is at the BOTTOM of your list of priorities? Apologies if I am mistaken…
Phil
@heavyphil
Ok sure not the best..... though I am SURE you understood, and though I say the terms are not fixed at the top.
Cancer cure at all costs perhaps?
No or very low lifestyle concerns perhaps?
You are welcome to pick any name, not just from these few, since you feel concerned.
I feel like I am in my 6th grade english class, not just from those titles....
Also dealing with insurance at moment... justify this prescription and imaging, they say they need proof or more documents or something, well dunno.... they want something but who knows what since they have everything they need. Anyway insurance also strives for all kind of document type word perfections of various kinds. Something I didn't ever grow up think mattered so much in life but people always want it for whatever reasons.
When we did science papers at my work and published we got editors that gave these feedbacks too, I guess it is important especially in a publication, but anyway insurance and online discussions take these things their own directions....
@aktbear I just had my first 3 mos PSA test on March 26th after my hemi gland (half the gland) Tulsa Pro at Mayo Jax on December 10th. PSA was 4.5 prior to procedure (one core of 13 had 3+4=7 with only 70% of core abnormal and less than 10% of the 70% was 4 so favorable intermediate, 41cc prostate, tumor was located in front left of interior portion of prostate) and 3 mos result was 0.51. Dr says that is great for first 3 mos test and expects it to drop further. Any thoughts about the results? How was your 3 mos test after Tulsa?
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Hug
1 ReactionI had my 3 mos in January and it was .34
Looking forward to my recheck May 5th.