Difficulty In Deciding on IMRT or Proton Therapy

Posted by jseabass @jseabass, 3 days ago

Hey all glad to find this postings and be in the group. Very helpful and comforting!
I'm a 64 years old. Just diagnosed with prostate cancer after a routine TURP procedure where my oncologist took a biopsy while in there. Biopsy came back positive with a Gleason score of 7 (4+3), my PSA is 4.2. Then I took a PSMA pet scan which showed the cancer thankfully was localized to my prostate. Here's the problem! Along with my urologists opinion, I had two consultations with Radiation Oncologists who all recomended IMRT and hormone therapy. They all downplayed the IMRT urinary and bowel side effects. But I have seen alot of research and info promoting Proton therapy over IMRT for side effect reassons. I'm going for a Proton consult tomorrow but surely they will push their Proton therapy over IMRT. I just want to take the best course to eradicate my cancer. Also im just as undecided and confused over taking Orgovyx over Lupron shots???
Very thankful for any thoughts helping me make these important decisions!

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

@daveinflorida

I am 65 with 3+4, PSA around 5 (varies with every test), PSMA negative for spread outside capsule, but MRI showed possible extracapsular extension, so more aggressive than 3+4 usually is. My RO recommend the Artera test which showed significant risk reduction in distant metastasis with short term (6 month) ADT, so I started Orgovyx 3 weeks ago. No side effects so far. I am also very active, running 5 times/week and lifting 2-3 times. This seems to be key to controlling side effects. I just met with my RO yesterday and start proton therapy in about 3 weeks. I also consulted with UFHPTI and would have gone there if closer. I didn't really want to move to JAX for 6 weeks. Good luck with your decision and treatment!

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Hey daveinflorida,
Thank you so much for sharing your journey and decisions! And glad to hear your doing well on the Orgovyx.! I feel all in this chat have each other's backs, and I am very greatfull and less anxious due to you all!
God bless and stay well!

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@brianjarvis

Similarly, at 65y I had a localized, Gleason 7(4+3), and PSA of 7.9. I had been on active surveillance for 9 years, and had much time to get referrals and evaluate all treatment options. Ultimately, I chose 28 sessions of proton radiation (at 2.5 grays per session; had treatments during April-May 2021), 6 months (two 3-month injections) of Eligard, and SpaceOAR Vue.
I did not go with the shorter 5-sessions of proton due to the reported higher risk of urinary bother with the higher radiation dose each session.
Just like someone would do when choosing a surgeon for a prostatectomy (with lots of robotic experience), ask questions and choose a radiation oncology team that has significant experience with proton radiation hitting small targets.
If you have the chance, look up the Bragg-Peak as it relates to proton radiation treatment of the prostate.

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Hey brianjarvis,
Thanks for sharing your PC history and treatment planning! It's all helping me come up with new questions for my RO and hopefully start treatment soon. And suggesting use of the SpaceOAR is greatly helping reduce my anxiety over rectal burns etc.
Thanks and stay well!

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@heavyphil

Most welcome! I forgot to add - most importantly! - why I had IMRT. My prostate had already been removed 5 yrs ago so I HAD to have IMRT since it has to cover a very wide area - prostate bed to pelvic nodes; they really don’t know where the surviving cancer really is so they carpet-bomb….
The guys talking about 5 dose SBRT is for patients like you who are getting your primary treatment for PCa; IMO it is the preferred way to go if there is no spread; especially the MRI guided system.
So please ask these RO’s specifically WHY they are not recommending this treatment over many, many sessions of IMRT. THEY “might” suspect a breached or broken prostatic capsule even though your PSMA is clear. FWIW, “clear” doesn’t always mean CLEAR - some cancer could be present and not show; sorry, but that’s the state of the art, such as it is… Best
Phil

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Hey heavyphil,
Thanks for the added facts and info! My RO is recommending IMRT over SBRT due to the treatments being lesser of a radiation dose, spread out over more sessions than SBRT. On 12/ 18/ 24 I had TURP procedure done to reduce the preasure my oversized prostate was putting on my urethra causing alot of Urinary problems! They took out 17 grms of prostate and now still healing but urinating much better! Due to this my RO wants to use IMRT with a lesser dose as not to possibly bother / injure that area which I had the surgery.
Thanks again for the insight!
Stay well!

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@jc76

@jseabass
Your welcome. That is why MCC is here to share our experience.

Regarding the Decipher. Most of the time they use the same biospies to do the Decipher. The Decipher will come back with specific determination if your cancer is low risk, intermediate or high risk. Some poster have had numbers given to them but my R/O (Mayo) use the low, intermediate, high. Mine came back low risk.

I mentioned it again because you asked about hormone therapy. I did not have it. When I got my orignal diagnosis at Mayo Jacksonville the R/O said recommendation was radiation treatment with 20 rounds of photon (SBRT) AND hormone treatment.

My Mayo R/O recommended doing a Decipher test. I did not know about what that was (I had not been a member of MCC back then) but said yes anything that helps with diagnosis. I had it done and it came back low risk. My diagnosis was changed from intermediate risk to low risk. Mayo R/O then changed his treatment recommendations to radiation only no hormone.

I did not find out about MCC until after I started my radiation treatments at UFHPTI. I was invited to a prostate seminar at Mayo Jacksonville and MCC came up during discussion.

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Hey jc76,
Thanks, definitely going to ask my RO to give me the Decipher test!
For me talking to you guys and getting so much helpful info is like taking a Xanax for my anxiety!
Thanks again!!

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@jseabass

Hey brianjarvis,
Thanks for sharing your PC history and treatment planning! It's all helping me come up with new questions for my RO and hopefully start treatment soon. And suggesting use of the SpaceOAR is greatly helping reduce my anxiety over rectal burns etc.
Thanks and stay well!

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If you search for the “2023 mid-year #Prostate Cancer Patient Conference" - This Dr. (Rossi) has a lot of information about proton in his portion of this 2023 Mid-Year PCRI presentation:
—> Starting at 3:38:45

There’s a Proton Q&A session at the end of his presentation with these topics:
—> 4:25:00: Proton & Insurance
—> 4:30:45: Proton SBRT
—> 4:34:30: Proton & ADT
—> 4:36:55 Proton & Supplements
—> 4:39:00: Proton & Diet
—> 4:40:00: Proton & Repurposed Drugs (Statins; Metformin)
—> 4:42:00: Proton & Post-Treatment Side-Effects Urinary
—> 4:46:00: Proton & Hyperbaric Therapy
—> 4:48:15: Proton & Pre-Existing Bowel Issues
—> 4:49:30: Proton & Hydrogel
—> 4:53:00: Proton & Re-radiation
==========

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@brianjarvis

If you search for the “2023 mid-year #Prostate Cancer Patient Conference" - This Dr. (Rossi) has a lot of information about proton in his portion of this 2023 Mid-Year PCRI presentation:
—> Starting at 3:38:45

There’s a Proton Q&A session at the end of his presentation with these topics:
—> 4:25:00: Proton & Insurance
—> 4:30:45: Proton SBRT
—> 4:34:30: Proton & ADT
—> 4:36:55 Proton & Supplements
—> 4:39:00: Proton & Diet
—> 4:40:00: Proton & Repurposed Drugs (Statins; Metformin)
—> 4:42:00: Proton & Post-Treatment Side-Effects Urinary
—> 4:46:00: Proton & Hyperbaric Therapy
—> 4:48:15: Proton & Pre-Existing Bowel Issues
—> 4:49:30: Proton & Hydrogel
—> 4:53:00: Proton & Re-radiation
==========

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Hey brianjarvic,
Thanks I am definitely going to check out the info in the Prostate Cancer Patient Conference!
Be well!

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