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.

jeabass, I was sold on Proton before I looked at MRI guided radiation. There is a five fraction treatment instead or the 28 which is usual for Proton. This MRI equipment shuts down if the prostate moves, as it does during proton treatment. It allows a smaller margin around the area of treatment. https://www.youtube.com/watch?v=90LoBQtAdYE Bless your decision.

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With a Gleason 4+3 and it isolated to the prostate, 4 or 5 SBRT sessions is pretty standard instead of IMRT. Usually, they will want a lot more IMRT sessions. Were they planning on radiating the prostate bed for some reason, That’s the usual reason they want IMRT.

You Also have the ability to get multiple other sessions that aren’t radiation like Focal Therapy, NanoKnife, cryotherapy, HIFU,, TULSA-PRO, etc.

Many people in this forum have had Tulsa pro and are really pleased with the results. NanoKnife is real popular in Europe and it’s being tested in Toronto.

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I had thirty six proton radiation sessions and had no problems from it at all. No burning, no redness, no internal issues and mine was to the prostate bed as I had previously had it removed.

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@gently

jeabass, I was sold on Proton before I looked at MRI guided radiation. There is a five fraction treatment instead or the 28 which is usual for Proton. This MRI equipment shuts down if the prostate moves, as it does during proton treatment. It allows a smaller margin around the area of treatment. https://www.youtube.com/watch?v=90LoBQtAdYE Bless your decision.

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gently,
Thanks for your reply and the video link! Was very informative... going for my first consult regarding Proton therapy tomorrow. Will see what they say compared to the IMRT sided doc's?

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@jeffmarc

With a Gleason 4+3 and it isolated to the prostate, 4 or 5 SBRT sessions is pretty standard instead of IMRT. Usually, they will want a lot more IMRT sessions. Were they planning on radiating the prostate bed for some reason, That’s the usual reason they want IMRT.

You Also have the ability to get multiple other sessions that aren’t radiation like Focal Therapy, NanoKnife, cryotherapy, HIFU,, TULSA-PRO, etc.

Many people in this forum have had Tulsa pro and are really pleased with the results. NanoKnife is real popular in Europe and it’s being tested in Toronto.

Jump to this post

Hey Jeff,
Thanks for the reply! The radiological oncologist was basing wanting to use IMRT from results of a biopsy taken from the center of my prostate by my urologist during my TURP procedure I had due to the fact that my enlarged prostate was squeezing on my urethra causing urinary difficulty. They are now also considering that I have a TRUS biopsy done with MRI which might be more effective in my cancer findings.

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@harvey44

I had thirty six proton radiation sessions and had no problems from it at all. No burning, no redness, no internal issues and mine was to the prostate bed as I had previously had it removed.

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harvey44,
Thanks and congrats on your success with Proton therapy! Thats great to hear as my biggest concern are the vastly described side effects that come with photon therapies...
Did you receive any hormone therapy? If so any comments or thoughts on Orgovyx vs Lupron shots?

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@jseabass
Discuss with your doctors about taking a Decipher test. It is a genetic test that can really help diagnose the risk factor of your specific cancer. It will come back with low, intermediate, or high risk. That can help your urologist and R/Os determine your treatment options.

Regarding proton radiation. I had mine done at UFHPTI. They have been doing proton radiation treatments since 2006 and are one of the most outstanding medical facilities that have vast experience with proton radiation.

You can contact them and asked for their handout information. It is free. It contains the two books on prostate cancer everyone talks about along with a ton on research and their program. They do not pressure you to have your treatments there. They are State employees and are all salaried. But they have 5 proton gantries and every state has had patients come there along with I last read over 40 different countries.

I would have had my proton radiation at Mayo Jacksonville but they do not have proton just photon. Mayo Jacksonville is building a new cancer center that will have proton radiation and will open in 2026.

I had consultations with Mayo Jacksonville, and UFHPTI. At UHFPTI absolutely no pressure to go there. They immediaely told me that both photon and proton radiation treatments have he same success rates. The difference (which I had read in their handouts and from my MAYO PCP) is that photon radiation comes in full force and exits the body full force. Proton radiation is controlled radiation and comes into body at lower dose, releases it's full force of programmed radiation at determined positions and stops. It does not continue out the body.

So in theory and much research now being done on photon and proton radiation the proton has the ability to help prevent additional radiation damage to surrounding tissues and organs. Both will have side affects.

I had 30 rounds of proton radiation with very minor side affects. I would do it again and would have no hesitation to have UFHPTI do it again. They provided outstanding care in an ultra modern latest equipment facility.

I would highly suggest getting their free handout they will fexex to you at no charge. Again they do this with out any pressure to go there. UFHPTI got a 25 million dollar federal grant to do long term study on photon and proton radiation and prostate cancer. I was asked to participate in that study and I said yes.

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@jseabass

harvey44,
Thanks and congrats on your success with Proton therapy! Thats great to hear as my biggest concern are the vastly described side effects that come with photon therapies...
Did you receive any hormone therapy? If so any comments or thoughts on Orgovyx vs Lupron shots?

Jump to this post

Ahoy there seabass, I cannot speak to the differences between proton vs photon radiation as I had 25 sessions of IMRT (or IGRT); had no real side effects at all, just some diarrhea for about a week after treatment, that’s it. No urinary issues at all.
But I did take Orgovyx for 6 months and although there are side effects they vary greatly from person to person. In my case, the hot flashes were tolerable - I mean, you KNOW why suddenly you feel warm so no big deal, right?
Also had fatigue the last 6 weeks or so. But the absolute key is to exercise regularly - with intent! No 2mph on the treadmill, OK? Any form of exercise you choose should be vigorous enough to work up a sweat and weightlifting is a MUST to maintain muscle tone.
You’re not going to the Olympics so use weights you are comfortable with. If you already weight train don’t be discouraged if you have to do less reps or use a lighter weight; that really worked for me.
ADT is a controversial topic but a Gleason 4+3 could be of the “unfavorable” type which makes it more aggressive than Intermediate grade. Also, a Decipher score could really be a game changer in deciding on Orgovyx or not.
I have NO regrets in taking hormones - in fact I changed RO’s because my first one said I didn’t need it and all the historical research said I did. His opinion was based on ONE new study that had many flaws and did not take co morbidities into account. Best
Phil

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I was 68, 4+3, high Decipher score, PSA 7.8, good PSMA-PET. I chose SBRT with a focal boost to the lesion, Barrigel spacer, and 6 months Orgovyx. All was essentially a cake-walk, very few early side effects and no later side effects. Did you discuss SBRT with your doc?

Stay Strong Brother, we got this.

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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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