Experiences with Mayo Proton, the Hitachi IMPT system, side effects?

Posted by bjroc @bjroc, Jun 27, 2023

For 2.5 years I was fine on AS with a 3+3 lesion, this year issues have surfaced.

Just some of my basic info, I have lots of BPH (prostate size 110 cc on recent MRI). My PSA often jumps around but is about 15. PSA truly varies for me a lot, but that is a rough recent value.

MRI shows I have no positive lymph nodes anywhere, no seminal vessel invasion, capsule intact, no other organ invasions. However, this years MRI showed one small new lesion.

During biopsy I was found to have a very tiny pair of bad biopsy lesions, this in addition to the original 3+3 lesion that again got a 3+3 on this biopsy. One very small new lesion is 3+4. The other says not enough tissue to fully grade the lesion, but it contains some 4 and since they don’t see 3 it is 4+4 but with a caveat listed that they can’t grade the lesion since not enough is present and it is a tiny lesion. At worst I should be Stage IIc. I have as a double check a PSMA scan more than a month off is the soonest I could get it.

At Mayo I have been offered RP or the Mayo Hitachi proton (IMPT) which was first offered in 2015 so there must be some opinions out there. For the month I wait for PSMA I would like to know experiences with the proton system they have. I would probably have to decline ADT since I have other health issues and it would create too many issues for me. I am also looking at other options outside Mayo, and Mayo Rochester is a long drive for me.

Did you have BPH and did that cause issues afterwards such as happens for some with radioactive type treatments? Urinary problems?
What stage were you?
How many sessions did you have and/or total dose (Gray equivalents)?
How about what we all want to know, sexual side effects, ED, loss of ejaculation, etc?
Any recurrence if you declined ADT?

Thanks for your inputs in advance.

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

@ftd3

I appreciate your very detailed post, very helpful. I also have a very large prostate coming in at 123cc and looking to learn about the best treatment with the least side effects. I think I maybe leaning toward the MRIdian Viewray which I learned about on this Mayo Clinic blog as well as Precision Point TP biopsy. Hope to avoid ADT, like Lupron. Thanks again. Anyone want to comment?

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I honestly know nothing of MRIdian Viewray. I can tell you the Mayo TP biopsy is very thorough, it found things on me the MRI didn't even show. But also it is pretty aggressive so you might bleed more than the transrectal ones I had in past. It is also super expensive so be sure to have good insurance going into it, if you need a TP biopsy that is. I need treatment at this point. I will turn down any ADT offered for sure.

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I don't have the privlage to live in Phoenix or Rochester and Mayo Jacksonville does not offer proton radiation for prostrate cancer or any other cancer as well. I chose UFPTI and had 30 rounds of radiation with proton radiation. I was told same things as above that prostrate cancer cells can't repaid themselves like regular cells and that is how the radiation cures the cancer as they can't repair and replace themselves.

Anyone given an option for a biopsy done tranperenial or rectum asked for transperenial. The rectum one comes with 2% chance of infection and 2 days in hospital if you get it. Transperenial is almost 0% with 1 out of 500 getting and infection. I had my MRI and biopsies done at Mayo as well as Decipher test. If you were not offered the Decipher test asked for it. It will look more closely at you cancer cells and give you a more accurate indication of type and level of cancer. Mine was under the biopsy as intermediate and with Decipher was lowered to low risk.

I see mention of the ballon. You should have been offered the Space/Oar which is an implant which does same thing as ballon. Some have both Space/Oar and and ballon done.

I don't see any mentions of drinking water prior to treatments. I was asked to drink 16 oz of water prior to each treatment. This was to lift my bladder away from prostrate. The amount you drink and time factor before is done at simulation. The simulation is where the prostrate markers, bladder, rectum, prostrate is measured and a bed made to ensure you are in right spot each time. Then an xray prior to treatment to ensure markers are correct and you are in proper spot.

I did get the tan/sun burn looking spots on both sides of hips. Does not hurt but noticeable. I did not have an enlarged prostrate can't comment on that. I do wish I lived at Phoenix and/or Rochester as would have chose the 5 high dose proton treatments if was available to me with my time and group.

I would recommend all have the Pet Scan, bone scan, and the Decipher test. Having knowledge if cancer is outside of prostrate (pet scan/bone scan) or just inside (mine) was a great anxiety relief. I have PTSD anxiety/panic disorder. The Decipher test was a relief also but did not change my therapy.

I will praise Mayo again for having such a great forum to hear from others.

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@ftd3

I appreciate your very detailed post, very helpful. I also have a very large prostate coming in at 123cc and looking to learn about the best treatment with the least side effects. I think I maybe leaning toward the MRIdian Viewray which I learned about on this Mayo Clinic blog as well as Precision Point TP biopsy. Hope to avoid ADT, like Lupron. Thanks again. Anyone want to comment?

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Do you think you could provide a paragraph or whatever on MRIdian Viewray? Much appreciated if you can. I have to keep all options open, especially if my upcoming PSMA shows something that eliminates other options.

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@bjroc

Do you think you could provide a paragraph or whatever on MRIdian Viewray? Much appreciated if you can. I have to keep all options open, especially if my upcoming PSMA shows something that eliminates other options.

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MRIdian is the world’s first radiation therapy system to integrate a diagnostic-quality MRI with an advanced linear accelerator and the only system with MR-guided, real-time, 3D, multiplanar soft tissue tracking and automated beam control.

Do a Google search for Amar Kishan, MD., Associate Professor and Chief of the Genitourinary Oncology Service at UCLA as he has done clinical research on MRIdian View Ray SBRT therapy and several informative videos.

The link below is to the MRIdian View Ray website which has much more info, videos, locations, etc.
https://viewray.com/mridian/discover-mridian/
You can also find out more thoughts in another helpful thread on this site by following the below link:
https://connect.mayoclinic.org/discussion/mridian-viewray-experience/
I am not a doctor and I am not giving medical advice but I am continuing my research to learn more. I really think MRIdian View Ray will be the best option with the least side effects for me. My goal now is to find the most prostate experienced MRIdian team with the best outcomes. I welcome additional comments.

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@bjroc

Do you think you could provide a paragraph or whatever on MRIdian Viewray? Much appreciated if you can. I have to keep all options open, especially if my upcoming PSMA shows something that eliminates other options.

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Bjroc: Dr Himanshu Nagar in NY city Weill Cornell NY Presbyterian has a good deal of experience with MRIdian viewray and prostates.

MRIdian viewray uses small margins of 2mm vs 4-6 for other types of radiation and so less healthy tissue is impacted. It also uses real time mapping adjustments, when needed.

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@jc76

I don't have the privlage to live in Phoenix or Rochester and Mayo Jacksonville does not offer proton radiation for prostrate cancer or any other cancer as well. I chose UFPTI and had 30 rounds of radiation with proton radiation. I was told same things as above that prostrate cancer cells can't repaid themselves like regular cells and that is how the radiation cures the cancer as they can't repair and replace themselves.

Anyone given an option for a biopsy done tranperenial or rectum asked for transperenial. The rectum one comes with 2% chance of infection and 2 days in hospital if you get it. Transperenial is almost 0% with 1 out of 500 getting and infection. I had my MRI and biopsies done at Mayo as well as Decipher test. If you were not offered the Decipher test asked for it. It will look more closely at you cancer cells and give you a more accurate indication of type and level of cancer. Mine was under the biopsy as intermediate and with Decipher was lowered to low risk.

I see mention of the ballon. You should have been offered the Space/Oar which is an implant which does same thing as ballon. Some have both Space/Oar and and ballon done.

I don't see any mentions of drinking water prior to treatments. I was asked to drink 16 oz of water prior to each treatment. This was to lift my bladder away from prostrate. The amount you drink and time factor before is done at simulation. The simulation is where the prostrate markers, bladder, rectum, prostrate is measured and a bed made to ensure you are in right spot each time. Then an xray prior to treatment to ensure markers are correct and you are in proper spot.

I did get the tan/sun burn looking spots on both sides of hips. Does not hurt but noticeable. I did not have an enlarged prostrate can't comment on that. I do wish I lived at Phoenix and/or Rochester as would have chose the 5 high dose proton treatments if was available to me with my time and group.

I would recommend all have the Pet Scan, bone scan, and the Decipher test. Having knowledge if cancer is outside of prostrate (pet scan/bone scan) or just inside (mine) was a great anxiety relief. I have PTSD anxiety/panic disorder. The Decipher test was a relief also but did not change my therapy.

I will praise Mayo again for having such a great forum to hear from others.

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I had spaceOAR inserted via tranperenial and I had an awful infection. Not sure if the gel was contaminated but I was given an antibiotic prior to the procedure but NOT AFTER it. I questioned that but doctor told me it was not necessary. As a result of the infection in my rectum, an ulcer materialized and my proton treatments at Sibley in Washington, DC were cancelled. After the infection I was told that spaceOAR should not be given again and a balloon was not necessary. After hearing that I said goodbye and went on active surveilance as Decipher came in as low risk (whatever that infers). My gleason is 3+4 or 3+3 depending upon who looks at it (another thing that bothers me as it impacts treatment options). The more I research the more scared I get of trusting anyone. But that's just me.

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Thanks all, anyone else choose between Tulsa Pro and Proton? Right now that is my choice, but my upcoming PSMA scan could change things to third or other options.

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@bjroc

Thanks so much for that reply! At least one person with BPH got proton! Real good info there.

Never had any uroflo test but the possible urinary side effects of proton or any radiation treatment are concerning, still are....

Yeah they all want to do ADT, which I told them I would turn down. They emailed all kinds of talk on ADT dosing and studies I could get into on differing doses of ADT, and I had already said no to all that.

I had no trouble getting the PSMA scan prior authorization so it should be paid when I get it, but 1.5 years ago insurance balked on one MRI payment from Mayo and I put in an appeal myself after Mayo said they were done trying, and insurance paid. So appeal was successful. I sent some guidelines stuff with the appeal, seemed to go through. So hope you get that paid. I think there is something about Mayo, the amounts they bill, or something else that they want a person to do an actual appeal so they know it was real.

Nice that the dose of proton you got was not huge, I get concerned with some of the dosing I read in papers. Mayo should brag they do it is less of a huge dose, some papers have double what you got, even admitting it was way too much. So that is real hopeful to me you got some dosing numbers.

Well I am real up in air till that PSMA, will see what it shows.

I heard that about coffee...

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My 3 months after radiation showed my PSA was undetectable. So, it seems the 5-radiation treatment works well even on very large prostates and still no side effects or trouble urinating. All is well except for the heat here in Phoenix but that is why I live here for the good nine months of beautiful weather and baseball almost all year long.

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