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Considering Tulsa Pro or Proton radiation (full gland)
I was diagnosed with stage two prostate cancer a year ago. Biopsy showed 11 cores of 3+3 and one core of 3+4 )less than 5% of 4). Bilateral No perineural invasion . That biopsy was an ultrasound. Decipher of 0.32. So I went on Active surveillance.
I had a repeat biopsy This year.
It was an MRI guided biopsy (not sure why I didn’t get an MRI guided biopsy last year ??) and I had an additional core of 3+4 (35% of 4) and the urologist re-sampled one of the tumors and it came back 3+5 (but less than 5% of the 5). On this biopsy I also had perineural invasion. No cribaform. I am sending the 3+5=8 for another decipher test
I’m afraid that my cancer didn’t grow in that year, but it was due to the better sampling of the MRI guided biopsy.
PET scan showed no escape
ED an incontinence is very important to me.
I had a consult at a newer Tulsa pro site and they stated that since I needed a whole gland ablation that I was not an ideal candidate due to the possibility of recurrence in 2 to 3 years. I like the advantage of Tulsa pro gives with reduced side effects and the availability of further treatment, including another Tulsa Pro procedure or radiation.
I am considering getting a second opinion from the Texas Prostate Institute, which is a higher volume Tulsa Pro site
I am also considering proton radiation consults at the university of Cincinnati . (I think they use a Varian machine with gantry) at the University of Cincinnati. I am leaning towards the proton radiation and the 28 sessions to reduce effect on the rectum and bladder and other organs . I have severe diverticulosis and generate many polyps during each colonoscopy. The downside of radiation seems to be in 2 to 3 years some of the same side effects start to appear as surgery.
I just read about getting the Prostox test for sensitivity of radiation
My questions
1) is it worth it to get a second opinion from the Texas prostate Institute on full gland ablation by Tulsa pro or is it too risky?
2) I’m considering 28 sessions of proton therapy. What is your opinion of that for my cancer
3) and is it worthwhile for me to get the Prostox test for radiation sensitivity?
4) any other advice?
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@jaygk My prep each time of full bladder/empty rectum was easy to repeat each day. The bladder being “full” is relative. For me, that was just 18oz of water to drink just 30 minutes prior to each fraction. So, I emptied my bladder 45 minutes prior to treatment time, started the 40 minute drive to the radiation center, 10 minutes into the drive drank 18oz of water, arrived at the treatment center 30 minutes later, and had the treatments. Worked every time; never had a problem.
The bowels being “empty” didn’t mean it had to be clean like it is for a transrectal biopsy; no need for an enema. What my radiation oncologist told me was what they really mean is nothing in the lower intestine, material or gas, that might move during the radiation treatment and cause the prostate to move. So, no gassy foods that might cause issues; so at the same time as emptying the bladder 45 minutes prior to treatment (mentioned in #1 above), I would also empty bowels. Worked every time; never had a problem.
In the weeks leading up to my radiation treatments, I practiced every day. By the time of my first treatment, I had the full bladder/empty bowel routine down to a ritual.
@jaygk I never had to wear a catheter.
I never had ED. There are data showing that the risk of late ED can be minimized by avoiding radiation hitting the penile bulb.
Since they radiate the entire prostate, being bilateral isn’t significant. However, depending on where the lesions are in your prostate, (based on the FLAME protocol) a boosted radiation dose can be administered where it’s needed, and less where it might not be needed. (My oldest brother recently had 28 IMRT sessions using the FLAME protocol, where at each session, three different Grays of radiation were administered, more Grays to areas of concern, thereby minimizing certain risks near areas of less concern.)
@bjroc
Sorry about your experience. Having to go through this twice is tough. Yes Brian J has been a great help to me. We are fortunate to live near the University of Cincinnati with the Varian proton machine. Perhaps try them if you have not already.
Curious what your # of and Gleason biopsy scores and if you had decipher testing. ?
@brianjarvis
My 2 3+4s and one 3+5 all -all on the left mid peripheral zone.
The right side is all 3+3
I couldn’t remember what your Gleason were and if only on one side?
@jaygk
Thanks,. At the little hospital near Dr Scionti in FL they got two cores with 4+3 in two areas. Where I live the university with a full pathology training program downgraded it to 3+4. I guess Cincinnati and Cleveland are not too far from Western NY but getting kind of tired. Yesterday I ran down to U. Penn Lancaster with the latest Varian Probeam 360 proton machine, and it was like I ran into a brick wall, they were trying to get me into CyberKnife and an old one too and basically said proton and prostate is just not needed, I passed. Locally I am offered a 5 session Varian ETHOS 36.25 Gy photon type but they want 6 month ADT due to two areas, but I guess it is a newer photon. Not sure I can handle ADT without a thyroid, so on full thyroid hormone replacement and the anti-T interferes with thyroid replacement so it will be super hard. Dr Scionti was supposed to have taken 75% of my prostate with Tulsa, but he must have run into trouble, maybe he got 40% or BPH brought some back who knows, but anyway it got me several years I guess. They really don't like two differing areas, right and left, so this is trouble for you too.
@jaygk no leakage or pain. I was grade group 2 close to 3 but doc said no ADT required since dechiper was .30, I had 2 3+4’s, if I had any 5 I would have had ADT. I know it’s a tough choice but recurrence might mean lifetime ADT. or worse. All my opinion.
@bjroc When I was diagnosed with prostate cancer (in April 2012), my first comments to my urologist were, “I don’t know anything about prostate cancer so, I’ve got a zillion questions to ask before you cut anything out of me, or bombard me with radiation, or inject toxic chemicals into me……” From that point on, it was about self-advocacy and shared decision-making.
As for convincing others about proton and prostate cancer —> I’m not sure why proton radiation works so much better than photon radiation with other types of cancer treatments, and wonder if the laws of quantum physics change for prostate cancer???? Or does patient compliance play a role in the outcome?
Yes, there are some specific photon (x-ray) technologies, that by simulating what’s inherent in proton radiation, control the beams and get similar results. Have you asked if they have those specific photon machines?
I’m not familiar with TulsaPro and am not sure what the salvage treatment options are post-TulsaPro (and not sure if proton is appropriate). If it’s only a single lesion being treated, I’d look at other options that are targetable and controllable - like focal therapy (e.g., cryo), brachytherapy, or SBRT (all with many months of ADT).
Good luck!
@brianjarvis Thanks brian, nope have small right lobe, small left lobe, so nobody interested in focal or basically anything with me outside standard photon stuff. Several brachy turned me down, hifu and tulsa as a repeat turned me down, all due to right and left areas albeit they are both small. As mentioned in post above locally offered Varian ETHOS, 5 session 36.25 Gy, barrigel, all that. Just originally in 2023 tried to get into proton, and trying again this last month real hard and again no luck. Locally offered are the Varian ETHOS and Varian Truebeam. Look I had thyroid cancer and radiation twice, maybe why I got prostate cancer because there is iodine uptake in prostate and I had that radioactive iodine twice. So by my luck that 36.25 Gy ETHOS photons will make another cancer for me in ten years. So really wanted something else, just all turned down at this point and down to Varian ETHOS or Varian Truebeam. I tried hard to get Brachy, pubic arch interference stopped that. ADT will be hard, real hard for me with thyroid hormones as the two interfere big time.
@bjroc Are the ones turning you down for proton the doctors/hospitals or is it the insurance companies?
@brianjarvis As far as I can tell it is the doctors turning me down for proton, of course maybe they know something so hard to say for 100% sure but no doctor said it was my insurance they just gave me a firm no need for proton in the prostate world at all.