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Considering Tulsa Pro or Proton radiation (full gland)

Posted by jaygk @jaygk, 2 days ago

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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toolbelt | @toolbelt | 4 hours ago
In reply to @brianjarvis "@bjroc When I was diagnosed with prostate cancer (in April 2012), my first comments to my..." + (show)
Profile picture for brianjarvis @brianjarvis

@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!

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@brianjarvis Several studies have shown proton is not superior to photon in terms of outcomes and quality of life. It is not the panacea people make it out to be. Use your favorite search engine.

Also there is some thought that PC is better controlled with fewer higher doses, than more lower doses.

Stay Strong Brother(s) We Got This.

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jim18 | @jim18 | 4 hours ago
In reply to @bjroc "@brianjarvis As far as I can tell it is the doctors turning me down for proton,..." + (show)
Profile picture for bjroc @bjroc

@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.

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@bjroc Medicine is a business in the USA. Several studies have shown that IMRT/SBRT is as effective as the like proton treatment for prostate cancer. Since photon is cheaper only classic Medicare routinely pays for proton PCa treatment. Medicare payments are much lower than other insurance. Not much incentive for a proton site to bother with a noncash pay PCa patient. One provider said they got about 50% approval provide company was self-insured and they did not use a benefits consultant (mine did). That ended this possibility since they said it would be a waste of their and my time. At one time MD Anderson treated PCa with proton and many on this board have been treated at Mayo, UCLA / UCSF, SK, etc. so it is (or was) possible to get Proton for PaC.

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