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 jaygk @jaygk

@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?

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@jaygk Mine were on both sides - 3+3, 3+4, & 4+3. If I recall correctly, there were two of each.

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Hi,
It’s very clear to me even if the kill of Proton vs x-ray radiation is equal, the fixed beam length causing less tissue damage to surrounding areas is a huge + in my humble non medical opinion. In the hands of a well trained technician/Oncologist Proton has to be a great choice. I would also go with the gel to protect other tissues in your body just as extra insurance. I searched the internet looking at credible sources that seem to back this up. But it’s still you and your doctors team’s choice on your treatment path.
Dave 3+4

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I see references to the COMPPARE study showing Proton and IMRT as comparable, I don’t think that data has been released? I do know PARTIQOL came to that conclusion. COMPPARE Is larger study, I would expect similar conclusions but not sure its done.

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So I had my consultation st University of Cincinnati and they stated no real difference between proton and photon. Side effects.
They recommend the 28 Session IMRT with the T guided Trubeam. I stated I want the space gel and gold markers. They also do the 5 sessions. They have done thousands of these. This would be in conjunction with Elligard 18-24 mo

I am for my decipher results for the Gleason 3+5(< 5%
Of the 5). And going to send biopsy samples for second opinion.

If the decipher comes back low they would shorten the Elligard to 6 mo.
If the repeat pathology report shows no grade 5 then no Elligard

I really want to avoid urinary issues and ED ( only been married 5 years). Although I know the Elligard will cause that anyway regardless of the treatment type.

I am all over the place. Planned on Tulsa…they didn’t want to do full gland with grade 5. Probably a good choice.

Planned on proton but they stated not really necessary as no real difference.
My questions:
1) trubeam with space gel and gold markers a solid plan?
2) 28 sessions vs 5 for lower side effects?
2)should still consider surgery?
3) I really hesitate taking the ADT…. Or I could shorten to 6
Months which Dr said is the most critical to take it. Too risky?? I just had rotator cuff
Surgery last year and finally back
In shape. Hate to lose it.

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1) With the modern machines the fiducials are not required but will not hurt. Will make the targeting quicker
2) Have you had the Prostox tests (genetic) for risk of long-term radiation effects? In general 28 is less than 5 but if you are in the 10% that score high on std Prostox but low on Prostox Ultra (SBRT) than the opposite is true. The short-term effects go away in a few months. The long-term effects can be there for life.
3) Eligard is just a brand of Lupron so a 6-month shot can leave you down for up to a year. Should insist on the Orgovyx pill. That will take the testosterone down quicker, not have a flare, and have quicker and higher recovery. If insurance coverage is a problem, buy it from Canada. Six months will cost about $2K (about $2K a month in USA). If it was me, I would either pay out of pocket or just skip ADT entirely vs taking a Eligard / Lupron shot.

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Thanks. Yes I have asked for Prostox test. I think I surprised them with that question as they don’t do it normally.

They didn’t think I needed the gold markers and the gel, but I’ve requested it anyway.

My research shows that having a small amount of Gleeson five I’m not an ideal candidate for SBRT 5 session. So I’m leaning towards the 28 sessions even though it will be much more inconvenient.

I’m waiting for my decipher test to come back next week on my 3+5. If that’s low, it may eliminate or reduce the six months or longer of ADT. I’m really not looking forward to the ADT side effects. I agree with you….i will specify the pill over the Elgard. Hopefully Medicare will cover that.

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Profile picture for jaygk @jaygk

So I had my consultation st University of Cincinnati and they stated no real difference between proton and photon. Side effects.
They recommend the 28 Session IMRT with the T guided Trubeam. I stated I want the space gel and gold markers. They also do the 5 sessions. They have done thousands of these. This would be in conjunction with Elligard 18-24 mo

I am for my decipher results for the Gleason 3+5(< 5%
Of the 5). And going to send biopsy samples for second opinion.

If the decipher comes back low they would shorten the Elligard to 6 mo.
If the repeat pathology report shows no grade 5 then no Elligard

I really want to avoid urinary issues and ED ( only been married 5 years). Although I know the Elligard will cause that anyway regardless of the treatment type.

I am all over the place. Planned on Tulsa…they didn’t want to do full gland with grade 5. Probably a good choice.

Planned on proton but they stated not really necessary as no real difference.
My questions:
1) trubeam with space gel and gold markers a solid plan?
2) 28 sessions vs 5 for lower side effects?
2)should still consider surgery?
3) I really hesitate taking the ADT…. Or I could shorten to 6
Months which Dr said is the most critical to take it. Too risky?? I just had rotator cuff
Surgery last year and finally back
In shape. Hate to lose it.

Jump to this post

@jaygk
1. Sounds good
2. The 28th sessions are IMRT The five sessions are SBRT. I’ve actually heard from many people that have had both and there doesn’t seem to be much difference in side effects between the two. If you were having 38 sessions of IMRT, maybe the side effects would be less than five sessions of SBRT. It’s hard to really say for sure. I’ve heard of similar results.
3. If you must get ADT, tell them you want Orgovyx. It has a lot fewer side effects and Your testosterone can come back quicker. Base the amount of ADT on what the results of your tests show. If you are a Gleason five longer ADT is necessary. Same with a high decipher score. Recent tasks have shown longer treatment results in longer life If you have aggressive cancer.

The second 2. Should you have surgery? You don’t mention how old you are. The younger you are the longer it might allow you to survive. Wait for the results of your 2nd biopsy evaluation and decipher. If they both come in high, you need to be careful, If you are young and in your 60s or less, you may have a longer remission with surgery. If all the tests come in low, then radiation makes more sense.

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Profile picture for jaygk @jaygk

Thanks. Yes I have asked for Prostox test. I think I surprised them with that question as they don’t do it normally.

They didn’t think I needed the gold markers and the gel, but I’ve requested it anyway.

My research shows that having a small amount of Gleeson five I’m not an ideal candidate for SBRT 5 session. So I’m leaning towards the 28 sessions even though it will be much more inconvenient.

I’m waiting for my decipher test to come back next week on my 3+5. If that’s low, it may eliminate or reduce the six months or longer of ADT. I’m really not looking forward to the ADT side effects. I agree with you….i will specify the pill over the Elgard. Hopefully Medicare will cover that.

Jump to this post

@jaygk Medicare B covers Eligard; Medicare D covers Orgovyx, since there are lots of plans check yours. A lot of Doctors like control. Once you take the Eligard jab you are stuck in more ways than one, regardless of any side effects. You can stop taking Orgovyx and ADT effects will subside in weeks, but bone loss is not easy to reverse.

They are right about the gel and fiducials if the aim is true; however, the gel gives extra safety. The urologist can do both at the same time.

As far as treatment it seems you have a good plan if Prostox Std comes back as low/avg risk. If high risk (75% chance of late effects) should consider either SBRT (if low/avg risk on Prostox Ultra) or RP.

REPLY
Profile picture for Jeff Marchi @jeffmarc

@jaygk
1. Sounds good
2. The 28th sessions are IMRT The five sessions are SBRT. I’ve actually heard from many people that have had both and there doesn’t seem to be much difference in side effects between the two. If you were having 38 sessions of IMRT, maybe the side effects would be less than five sessions of SBRT. It’s hard to really say for sure. I’ve heard of similar results.
3. If you must get ADT, tell them you want Orgovyx. It has a lot fewer side effects and Your testosterone can come back quicker. Base the amount of ADT on what the results of your tests show. If you are a Gleason five longer ADT is necessary. Same with a high decipher score. Recent tasks have shown longer treatment results in longer life If you have aggressive cancer.

The second 2. Should you have surgery? You don’t mention how old you are. The younger you are the longer it might allow you to survive. Wait for the results of your 2nd biopsy evaluation and decipher. If they both come in high, you need to be careful, If you are young and in your 60s or less, you may have a longer remission with surgery. If all the tests come in low, then radiation makes more sense.

Jump to this post

@jeffmarc I really struggle with the hormone therapy I am 66 and healthy with a healthy sex life. Only been remarried 5 years. My wife is 9 years younger. I am afraid I will get depressed

Dr said the first 6 months of ADT during the radiation if critical. Maybe I just do 6 months of orgivyx. ??

I watched the PCRI about proton treatments and he said 1/3rd men do not take the recommended hormone treatment. I know it is risky but I can understand also. I pray my decipher comes back a 0.32 like last year but since this sample is the 3+5 )< 5% of the 5) vs the 3+4 last year I am not hopeful. I also don’t expect the second pathology review to change the Gleason 5.

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Profile picture for jim18 @jim18

@jaygk Medicare B covers Eligard; Medicare D covers Orgovyx, since there are lots of plans check yours. A lot of Doctors like control. Once you take the Eligard jab you are stuck in more ways than one, regardless of any side effects. You can stop taking Orgovyx and ADT effects will subside in weeks, but bone loss is not easy to reverse.

They are right about the gel and fiducials if the aim is true; however, the gel gives extra safety. The urologist can do both at the same time.

As far as treatment it seems you have a good plan if Prostox Std comes back as low/avg risk. If high risk (75% chance of late effects) should consider either SBRT (if low/avg risk on Prostox Ultra) or RP.

Jump to this post

@jim18 is the orgovyx covered by the perscription insurance WellCare or I have part G supplemental?

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