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.

@toolbelt

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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Hey toolbelt,
Great to hear all went good with your journey! Thanks for explaining your good results with the SBRT. I have an upcoming appointment with my doc and will bring it up as a possible option. Also good to know you id well on Orgovyx. I hear it has less chance of heart attack than Lupron and your testosterone rebounds back quicker when done.

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@jc76

@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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Hey jc76,
Thank you very much for explaining your proton therapy success story and where to go! I am definitely going to ask my doc about the decipher test! Were you put on hormone therapy, and if so what meds?....

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@heavyphil

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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Hey heavyphil,
Great to hear how well you did on IMRT! As mentioned my doc feels thats the right treatment for my condition. But I will ask him about the Decipher score test. And thanks for your explanation of how you did on Orgovyx, as I would prefer that over the older Lupron shots. And yup, understood I definitely have to put more time and emphasis on exercise!
Thanks again pal!

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daveinflorida,
Thanks for sharing your story and decisions! I'm having such a hard time deciding between Photon and Proton treatment.....
Both seem to have equally good results except for the extra radiation and side effects past the prostate....

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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?

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I do not know which hormone I received but I had a shot that was for 6 months and it was given approximately 3 months before I began my radiation therapy. The side effects from the hormone therapy and the radiation therapy combined was very exhausting for me as I continued to work outside in my lawn service business. Coupled with the summer heat and the work pulse near daily radiation, left me completely exhausted by weeks end. It took me all weekend to recover only to begin it all over again on Monday morning. I started the lawn service after I retired from my regular line of employment. I have now been completely retired for 3+ years. I'm 81 and still on a wait and see for my 3rd time of increasing PSA scores. Four PET scans have produced no visible cancers.

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@jseabass

Hey toolbelt,
Great to hear all went good with your journey! Thanks for explaining your good results with the SBRT. I have an upcoming appointment with my doc and will bring it up as a possible option. Also good to know you id well on Orgovyx. I hear it has less chance of heart attack than Lupron and your testosterone rebounds back quicker when done.

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You are spot on with the cardiotoxicity of Orgovyx. No matter what hormone therapy you choose, and with a 4 + 3, it is very likely you will be taking that route, please make sure to exercise vigorously and watch your calories and likely take calcium and vitamin d supplement.

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@jseabass
I agree with @gently
I had 5 sessions with the MRIdian which has a built in MRI. This is really important. Most radiation treatments use a margin of radiation exposure around the prostate that ranges from 3-5 mm, including Proton therapy. The MRIdian (and Elekta Unity) use 2 mm. The built in MRI, vs fused images, means that less healthy tissue is exposed because of the real time mri accuracy. This affects side effects and toxicity. Here is a link to information regarding the Mirage randomized trial which talked about the results of the trial:
https://www.urologytimes.com/view/mirage-trial-margin-reduction-with-mri-guided-sbrt-reduces-toxicity-vs-ct-guided-sbrt

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@jseabass

Hey heavyphil,
Great to hear how well you did on IMRT! As mentioned my doc feels thats the right treatment for my condition. But I will ask him about the Decipher score test. And thanks for your explanation of how you did on Orgovyx, as I would prefer that over the older Lupron shots. And yup, understood I definitely have to put more time and emphasis on exercise!
Thanks again pal!

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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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@jseabass

Hey jc76,
Thank you very much for explaining your proton therapy success story and where to go! I am definitely going to ask my doc about the decipher test! Were you put on hormone therapy, and if so what meds?....

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@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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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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