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Considering Tulsa Pro or Proton radiation (full gland)

Posted by jaygk @jaygk, Apr 23 8:04am

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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Profile picture for stldadof4
stldadof4 | @stldadof4 | May 19 4:15pm
In reply to @jaygk "@stldadof4 that sounds very similar to my experiences at Kettering for Tulsa. I wasn’t sure if..." + (show)
Profile picture for jaygk @jaygk

@stldadof4 that sounds very similar to my experiences at Kettering for Tulsa.

I wasn’t sure if it was my whole gland or my less than 5% Gleason 5 that made me unfavorable. I think they would do the treatment if I insisted …. but they felt I would be back in 2 to 3 years to be retreated.
I received my decipher test back and got a 0.19 which I am excited about.
I’m sending my Gleeson five off to Dr. Epstein for a second opinion.
If my 5 is downgraded to 4 I will probably skip the hormone therapy based on that fact, and my favorable Decipher score
I just sent my Prostox off to see if I’m sensitive to radiation.
If I’m not sensitive, I’m looking at 28 IMRT treatments at the university of Cincinnati
28 is a lot but the radiologist oncologist mentioned that the SBRT can be somewhat of a roller coaster and I am only 20 miles away from the site
I’ve never been through anything in my life that was so difficult to decide.
So many options and so many side effects.
I hope I can be confident in my decision and not second-guess myself after treatment begins
I have requested the spacer and the gold markers

Jump to this post

@jaygk We do have a lot in common on this journey. I had a low ArteraAI score (similar to decipher) just sent off my prostox too. I had not heard that about SBRT. Like you, I’m pretty close to the treatment center so I don’t feel like I need to conserve trips. I totally agree with you that there seem to be so many options all with their own life-altering pros and cons. It is very overwhelming. The cynic in me wonders if it’s just a big money grab. I’m sure there is an element of that since there is such a large industry built around any type of cancer, and PC is the only one I have firsthand experience with. I also hope that you and I (and all of us who are on this road) can pick the option that seems right and then move forward with confidence. From reading about others, it seems like that is typically the case and guys are happy with the path that they chose. Just takes a lot to get there. All the best to you on this journey

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pioneer | @pioneer | Jul 30 7:05am

Well folks I had my three month post TULSA PRO PSA test this week and I am happy to report that my new PSA is less than o.1. Considering when I started my cancer journey in Oct 2025 my PSA was 9.6 I’m very happy. Good luck to all who are still on the journey.

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jaygk | @jaygk | Jul 30 8:00pm

Update:
Prostox test came back low risk to radiation sensitivity .

My decipher came back 0.19. I am blessed with that. I decided not to take the hormone therapy.

I had the Barrigel and gold fiducials placed yesterday. All went well. Very little pain. They did the simulation directly after.

I will start the 28 photon sessions in 3 weeks using the Truebeam VMAT with daily cone beam CT at the University of Cincinnati.

It was a journey making this decision. A real roller coaster. I met with a surgeon, 2 radiologists, a Tulsa Pro Dr, and my gastroenterologist.
You really have to be your own advocate…..more than any other situation I have ever been in. And it comes down to picking which side effects you can live with factoring in the effectiveness of the treatment.

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2 replies
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heavyphil | @heavyphil | Jul 31 6:17am
In reply to @jaygk "Update: Prostox test came back low risk to radiation sensitivity . My decipher came back 0.19...." + (show)
Profile picture for jaygk @jaygk

Update:
Prostox test came back low risk to radiation sensitivity .

My decipher came back 0.19. I am blessed with that. I decided not to take the hormone therapy.

I had the Barrigel and gold fiducials placed yesterday. All went well. Very little pain. They did the simulation directly after.

I will start the 28 photon sessions in 3 weeks using the Truebeam VMAT with daily cone beam CT at the University of Cincinnati.

It was a journey making this decision. A real roller coaster. I met with a surgeon, 2 radiologists, a Tulsa Pro Dr, and my gastroenterologist.
You really have to be your own advocate…..more than any other situation I have ever been in. And it comes down to picking which side effects you can live with factoring in the effectiveness of the treatment.

Jump to this post

@jaygk It’s funny to think that if you were adding a deck to your home or considering a renovation you’d get 3 estimates at least.
But so many men just go along with their urologist, say okey-dokey and submit to surgery; no research, no second opinion, nothing.
Your post drives home the point that YOU are ‘active’ in these decisions, and not merely a slab of meat with a valid Medicare card.
Phil

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2 replies
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jcf58 | @jcf58 | Jul 31 8:23am
In reply to @heavyphil "@jaygk It’s funny to think that if you were adding a deck to your home or..." + (show)
Profile picture for heavyphil @heavyphil

@jaygk It’s funny to think that if you were adding a deck to your home or considering a renovation you’d get 3 estimates at least.
But so many men just go along with their urologist, say okey-dokey and submit to surgery; no research, no second opinion, nothing.
Your post drives home the point that YOU are ‘active’ in these decisions, and not merely a slab of meat with a valid Medicare card.
Phil

Jump to this post

@heavyphil
Phil makes a great point. Do your own research. I talked to 7 doctors before I made my decision. If I had been on this forum back then, it would probably have been more!

REPLY
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oldgreenpaint | @oldgreenpaint | Aug 1 7:59am
In reply to @jaygk "Update: Prostox test came back low risk to radiation sensitivity . My decipher came back 0.19...." + (show)
Profile picture for jaygk @jaygk

Update:
Prostox test came back low risk to radiation sensitivity .

My decipher came back 0.19. I am blessed with that. I decided not to take the hormone therapy.

I had the Barrigel and gold fiducials placed yesterday. All went well. Very little pain. They did the simulation directly after.

I will start the 28 photon sessions in 3 weeks using the Truebeam VMAT with daily cone beam CT at the University of Cincinnati.

It was a journey making this decision. A real roller coaster. I met with a surgeon, 2 radiologists, a Tulsa Pro Dr, and my gastroenterologist.
You really have to be your own advocate…..more than any other situation I have ever been in. And it comes down to picking which side effects you can live with factoring in the effectiveness of the treatment.

Jump to this post

@jaygk You are among the very small percentage of men that educate yourself very well before deciding upon if/when/what your treatment will be. You have done well!

REPLY
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oldgreenpaint | @oldgreenpaint | Aug 1 8:03am
In reply to @heavyphil "@jaygk It’s funny to think that if you were adding a deck to your home or..." + (show)
Profile picture for heavyphil @heavyphil

@jaygk It’s funny to think that if you were adding a deck to your home or considering a renovation you’d get 3 estimates at least.
But so many men just go along with their urologist, say okey-dokey and submit to surgery; no research, no second opinion, nothing.
Your post drives home the point that YOU are ‘active’ in these decisions, and not merely a slab of meat with a valid Medicare card.
Phil

Jump to this post

@heavyphil A great analogy!

REPLY
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robertov | @robertov | Aug 1 3:51pm

I had Gleason 4+4 and had SBRT Proton Therapy after 9 months of ADT (Orgovyx). I don’t think there is any difference between 5 and >5 sessions. Your particular tumors are localized. I’m assuming the whole gland approach was the prescence of Gleason 5. The 5 sessions were easy, I didn’t have only minor short term urinary effects and 10 months on, I am PSA non-detectable and my testosterone is back to normal.

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1 reply
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toolbelt | @toolbelt | Aug 1 4:35pm

In general SBRT treatment is whole gland rather than localized, with the best treatment including a focal boost to the actual lesion(s).
Stay Strong Brother, We Got This.

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1 reply
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jaygk | @jaygk | Aug 1 4:48pm
In reply to @robertov "I had Gleason 4+4 and had SBRT Proton Therapy after 9 months of ADT (Orgovyx). I..." + (show)
Profile picture for robertov @robertov

I had Gleason 4+4 and had SBRT Proton Therapy after 9 months of ADT (Orgovyx). I don’t think there is any difference between 5 and >5 sessions. Your particular tumors are localized. I’m assuming the whole gland approach was the prescence of Gleason 5. The 5 sessions were easy, I didn’t have only minor short term urinary effects and 10 months on, I am PSA non-detectable and my testosterone is back to normal.

Jump to this post

@robertov
Thanks.

They offered the 5 photon SBRT treatments but since I am only 20 miles from the center I opted to make the drive.

My RO stated he won’t be doing the focal boost.

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