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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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@celtic External radiation most often uses photons (x-rays).
However, it was discovered decades ago, that protons (heavy particles) had wavelike characteristics and could be used in applications similar to photons.
The science would indicate that protons should have fewer adverse side-effects than photons in prostate cancer treatment (due to proton’s Bragg-Peak characteristics). But, in recent studies that (fewer adverse side-effects) has not been demonstrated.
@celtic
If you start off with radiation, you do not get salvaged radiation that is for people that have had a prostatectomy.
I answered your question in another message.
@celtic
Hey good luck looking around celtic, proton seems good to me. I guess Brian mentioned what it is. I have had 3 cancers, just about all of them there are these quality of life QoL studies. They all have something wrong as they jump to really not the best conclusions, just about always. Things the patients say are one thing as they rave about something online or in discussions or people you meet, another are the studies which sometimes say there are no benefits of anything and all gloom and doom so they go the lowest denominator. So sometimes I think the studies aren't very well done, or not just sometimes, but QoL is hard to gauge so these are hard to determine measurements..
As I was told and found out on my own with proton there aren't many places to get it. The academic ones are booked to the moon, so few slots. As academic doc told me proton treatment in prostate cancer is feast or famine. If you try to get in an academic one, the slots are all taken, that happened to me in 2023 Mayo. But there are private proton centers, sometimes manned by really top people, but they may have few takers as you have to travel there once a week and they are just stand alone centers. If you want some places send me a message and I can reply privately and let you know more about proton places.