What would be best course of treatment

Posted by jeepio @jeepio, May 27 4:26pm

My MRI: Large lowADC lesion throughout the right peripheral zone with extra prostatic extension and involvement of the right neurovascular bundle categorized as a PI-RADS 5 lesion
Prostatomegaly with BPH
No evidence of local regional lymphadenopathy or osseus lesions
Right seminal vehicle containing a fluid level which may represent hemmorrage products
Petscan: findings consistent with prostate cancer but no F18 Pylarify avid metastatic disease
Biopsy: PSA 4.41 Summary Adenocarcinoma
Gleasonscore 7 ( 3+4)
Grade group 2
7 positive cores
Longest tumor involved 30%
Decipher: High risk 0.95 ( aggressive tumor)

I’m two months away from being 74
Does’nt look like I want to wait and see what happens
Generally pretty healthy
Have been looking at options; if radiation, would prefer Proton
My urologist ( not a oncologist/urologist) advises no surgery and referred me to his radiologist he works with, have not seen him yet, but they dont use proton beam.

Remember that old program on tv “ what would you do?
Hve a appoint with Mayo urologist ( wanted oncologist/urologist but since I had seen their urologist 1 time for a opinion to try to get biopsy faster, they don’t want to change ( against the rules, she said)
Hoping he’ll send me the right direction..Also. They don’t have Proton in Jacksonville yet..
Thanks for any input, love this board!
Wishing all of you strenght on this path!

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Many doctors would recommend that at your age, radiation would make the most sense. ADT first to get it to shrink. SBRT would be common recommendation with 3+4, pick your type!

Have you asked about TULSA-PRO at Mayo? They use it. Many people in this forum have had it and have been pleased with it. Ask your doctor.

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@jeepio I had the mridian linac with 2mm margins and a built in MRI. I looked at proton as well. I also had spaceoar gel inserted about a week before my treatment. This separates the rectum from the prostate and is important in helping to prevent healthy tissue exposure and side effects. Glad you picked a center of excellence like Mayo.

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@jeepio
If you live in Jacksonville area are you aware of University of Florida Health Proton Therapy Institute (UFHPTI)?

I live in Ponte Vedra and have been going to Mayo Jacksonville since 2006. Yes Mayo Jacksonville only has photon radiation treatments. The new cancer center will open in 2026 with proton radiation.

Many patients going to Mayo Jacksonville are referred to UFHPTI. Espeically children and those cancers that need precise radiation treatments.

UFHPTI offers a handout with tons of research on radiation treatments, their programs, and two books (one is Walsh book). It is free and will be fedex to you. Thers is not pressure to go there as are state salaried employees. The facility is ulter modern and underwent upgrades on all the 5 gantries to latest equipment.

My first consultation were at Mayo Jacksonville. I had my MRI done there, biopsies, bone scan, Decipher. My Mayo PCP advised getting a second opinion at UFHPTI. I went there and decied on proton. UFHPTI used all my medical records from Mayo to make their diagnosis with exception of adding a PSMA test (negative finding).

UFHPTI uses Space/Oar is it can be done with patients or will use the ballon. The also to markers on your prostate. They also do the water drining to move your bladder away. They do a simulation bed to is your specific bed you lay in each time. Then will do a low dose xray to make sure you are lined up for the treatments.

I would have gone to Mayo Jacksonville is they had had proton radiation. You will read a lot of different opinons on photon and proton radiation. The main difference is proton enters body at a low dose, releases is programmed dose as a specific spot and does NOT continue through body. Photon enters full dose, treats your cancer and continues out the body unlike proton.

Call UFHPTI and asked for their free information packet. If you choose Mayo they have an excellent radiation treatment program there but is photon. My Mayo urologist is the doctor who referred me to Mayo R/O for consultation. I then went to UFHPTI for second opinion.

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All the comments suggested are excellent. The big standout for me is that high Decipher Score.
Was there any cribriform/IDC pattern in your biopsy?
That is tough to eradicate with radiation alone so the suggestion of ADT is a good one to weaken the cancer.
Also, you might inquire about HDR brachytherapy in conjunction with SBRT or IMRT. This is short term ( minutes to an hour) high intensity seed placement to blast the worst area since it can be resistant to external radiation alone. It is then followed by a course of SBRT (5 tx) or IMRT (25-39 tx).
Sorry to muddy the waters, but I personally am against surgery at age 74 as well and would like to see you treat this without it. Best,
Phil

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@jeffmarc

Many doctors would recommend that at your age, radiation would make the most sense. ADT first to get it to shrink. SBRT would be common recommendation with 3+4, pick your type!

Have you asked about TULSA-PRO at Mayo? They use it. Many people in this forum have had it and have been pleased with it. Ask your doctor.

Jump to this post

I'm pretty sure TULSA-PRO would not be appropriate for a cancer with extra prostatic extension and involvement of the right neurovascular bundle. I had a very small area of EPE, with no spread to other areas (yet) and my RO said focal therapy would be contraindicated as it would not cover the EPE, or in the OP's case, the nerve bundle.

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Your high decipher score indicates a higher risk of prostate cancer spreading and metastasis.

With your 3+4, what % were the “3” and what % were the “4”?

What were the SUVmax scores of the lesions they indicated were “consistent with prostate cancer”?

If you choose proton radiation, is there a proton center nearby?: https://www.proton-therapy.org/map/

(At 65y/o, and with a 3+4, I chose proton radiation + SpaceOAR Vue. I finished my 28 proton radiation treatments 4 years ago today. Today, it’s as if nothing ever happened - just walked in a door, got treated (28x), and walked out the door…..it’s practically back to the way it was before the prostate cancer journey started.)

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Just wanted to repeat what Phil said - if you have cribriform or IDC formations RP might be beneficial. If you are in good health (as you stated that you are), your age of 73 should not be a limiting factor for the surgery. Your Decipher points to very aggressive cancer and if it is contained in a prostate RP is viable solution if you want to have it.

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@jeffmarc

Many doctors would recommend that at your age, radiation would make the most sense. ADT first to get it to shrink. SBRT would be common recommendation with 3+4, pick your type!

Have you asked about TULSA-PRO at Mayo? They use it. Many people in this forum have had it and have been pleased with it. Ask your doctor.

Jump to this post

Thxs Jeff, I will ask!

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@bens1

@jeepio I had the mridian linac with 2mm margins and a built in MRI. I looked at proton as well. I also had spaceoar gel inserted about a week before my treatment. This separates the rectum from the prostate and is important in helping to prevent healthy tissue exposure and side effects. Glad you picked a center of excellence like Mayo.

Jump to this post

Good advise, thank you!

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@jc76

@jeepio
If you live in Jacksonville area are you aware of University of Florida Health Proton Therapy Institute (UFHPTI)?

I live in Ponte Vedra and have been going to Mayo Jacksonville since 2006. Yes Mayo Jacksonville only has photon radiation treatments. The new cancer center will open in 2026 with proton radiation.

Many patients going to Mayo Jacksonville are referred to UFHPTI. Espeically children and those cancers that need precise radiation treatments.

UFHPTI offers a handout with tons of research on radiation treatments, their programs, and two books (one is Walsh book). It is free and will be fedex to you. Thers is not pressure to go there as are state salaried employees. The facility is ulter modern and underwent upgrades on all the 5 gantries to latest equipment.

My first consultation were at Mayo Jacksonville. I had my MRI done there, biopsies, bone scan, Decipher. My Mayo PCP advised getting a second opinion at UFHPTI. I went there and decied on proton. UFHPTI used all my medical records from Mayo to make their diagnosis with exception of adding a PSMA test (negative finding).

UFHPTI uses Space/Oar is it can be done with patients or will use the ballon. The also to markers on your prostate. They also do the water drining to move your bladder away. They do a simulation bed to is your specific bed you lay in each time. Then will do a low dose xray to make sure you are lined up for the treatments.

I would have gone to Mayo Jacksonville is they had had proton radiation. You will read a lot of different opinons on photon and proton radiation. The main difference is proton enters body at a low dose, releases is programmed dose as a specific spot and does NOT continue through body. Photon enters full dose, treats your cancer and continues out the body unlike proton.

Call UFHPTI and asked for their free information packet. If you choose Mayo they have an excellent radiation treatment program there but is photon. My Mayo urologist is the doctor who referred me to Mayo R/O for consultation. I then went to UFHPTI for second opinion.

Jump to this post

Thank you very much for your comments, Jc; I have contacted them!

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