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Experiences with Mayo Proton, the Hitachi IMPT system, side effects?
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.
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This thread has a lot of the info you ask.
https://connect.mayoclinic.org/discussion/what-were-your-side-effects-of-proton-therapy-both-during-and-after/-
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1 ReactionThanks I did post there didn't find my answers. Trying to find the person with BPH and had proton. I see they also gave you the Japanese study which you had mentioned to me, which the Mayo docs sent me too with this one:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3465790/Looking for some of the rest of this, but also personal experience:
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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?
I misquoted as that was an article I found, here is the one other proton article they gave me:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6142310/
I live in Florida. Mayo in Florida does not offer proton therapy yet. I chose UFPTI for proton radiation treatment. I had positive biopsies done at Mayo and worst was 3+4=7 (only 1 of 4) and a 3. However the Decipher test came back as Low Risk.
I did not even consider hormone treatment as I have heart failure. Nor did the Decipher test indicate I should.
The treatment after much research was UFPTI proton (to lesson damage to other areas and organs as much as possible) of six weeks M-F. I have two sessions left. I found the biopsy, simulations, space/oar, pet scans, bone scans, catheter injection to check lower prostrate the most traumatising part. The actual treatments are simple. They only take about 10-15 minutes. Most of that time is getting your set into your bed (specifically made for you), low dose xray to make sure your markers are aligned for treatment.
I am not sure where you live but really consider proton radiation versus photon. But make decisions based on what you learn, your research, your personal feelings when meeting with different providers and treatment plans. Just don't rely on one provider or one professional get many different opinions and do research. It is your body, your prostrate, and your health. Good luck!
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2 ReactionsThanks for the followup. Yes if the PSMA comes back worse than expected Mayo Rochester would advise photon (IMRT), not proton (IMPT), but I am looking outside Mayo at Tulsa Pro. Locally I can get RP is about it. Tulsa Pro is a good option that I am serious about, it is done in Sarasota as long as I don't have calcifications which the CT part of the PSMA scan would show and if I have them. I will likely opt for Tulsa if I can, but we will see, have to be cleared by PSMA scan and no mets. Right now mets are not seen on MRI, but PSMA sometimes sees what MRI doesn't. So we will see.
If clear of calcification and mets, Tulsa pro seems most likely possibility for me (as of today).
If calcifications show that eliminates Tulsa, thus would opt for proton at Mayo if I can learn more.
If mets show on PSMA, I am not sure but photon like IMRT is available, but I might like to get more options to see what else is out there if that is the case.
Proton at Mayo is 5 to 7 sessions, not sure why but it is perhaps a newer machine than some. I am curious on total proton (gray equivalents) dosing they give people, since Mayo did not go over that at all.
It is possible I can be convinced of proton over tulsa but want to see if anyone has BPH and did proton, but so far I am leaning to Tulsa because it handle BPH and cancer.
Tulsa as of today is my first choice. Proton second. But not sure what is a third option if I can't do those. I am just not sure of proton because I have BPH.
I am your Huckleberry except for your PSA bouncing around. My PSA has been between 2.3 and 2.9 for the last five years. The only reason I found out I had PC cancer was my female endocrinologist order a full PSA test last year. The full test is PSA, PSA free, and PSA free %. My PSA free% was low so I went to Mayo Phoenix. My MRI showed a 120.5 cc prostate, so I have you beat there. Yes my flow is slower than when I was twenty but still have no trouble going as my GP put me on Tamsulosin three years ago. Like you I was worried about what radiation would do to my ability to urinate so I had a uroflow test done and compared it to one I had had done in 2017 and I was only 2ml per second slower so I elected to not do anything with my prostate before radiation which turns out to be a great decision. My MRI showed a 7mm lesion and I elected for a transperinal MRI fusion guided biopsy. Since my prostate was so large, I had a 30-core biopsy with five cores from the area of the lesion. Three cores showed 3-4 and two showed 4-3 and the rest of the prostate was clean. I was graded as a T1cNO as it the lesion could not be felt by DRE and was only visible on an MRI. I was then scheduled for a PSMA Pet scan which showed that the cancer was confined to the prostate only in the area of the lesion. Now here is where the problem comes in with Mayo. Medicare pays for the PSMA Pet Scan and the radioactive tracer but for some reason and I suspect it is the Mayo's billing department and their code that they sent to Medicare, Medicare does not want to pay the doctor that reads the PSMA Pet Scan and now Mayo wants me to pay and this scan was on 12/2/22. My radiologist for my MRI got paid as did the doctor who reviewed the fiducial marker and SpaceOar placement. So just a heads up as I sent an appeal into Medicare yesterday as the Mayo billing was well you signed a form saying you would pay. Pisses me off because of something in the billing system isn't correct now it is my problem. I was first offered RP but as I am 73 and 10 months old and I have read too many stories about incontinence and diapers to go for surgery. I was then referred to a radiation oncologist who wanted to jab me with a six-month Lupron shot and 28 proton radiation treatments. Here is where I am a little different than most patients as I have been on testosterone replacement since 2008 or fifteen years and my endocrinologist had me get off it for a month to check my system and I was castrate at the end of the month and told the oncologist this, but he still wanted to jab me and I turned down his generous offer. So he tested me after a few weeks and my testosterone level was 12 ng/dl with is lower than the Lupron shot which would have been a waste of money. Read this article " Radiotherapy with or without androgen deprivation therapy in intermediate risk prostate cancer". It says there is no difference in outcomes if you don't do androgen deprivation if you are older than 70. Why did I stop my testosterone replacement while doing radiation if it makes no difference? Just hedging my bets. Now for the proton radiation. The oncologist wanted me to be jabbed and 28 treatments but I investigate Cyberknife which is only 5 radiation treatment and then upon further investigation I found out that Mayo does 5 Proton radiation treatments. Did I mention that the rediation oncologist is a co-author on a study of six months of Lupron with 28 Proton treatments? Must have shipped my mind. When I mentioned five he said "we can do five" which is what I did. You get five fractions of 725 cGy on Monday, Wednesday, Friday, Monday, and then Wednesday for a total of 3625 cGy. If you don't mind having a balloon up your butt to immobilize your prostate it really is a piece of cake. I felt guilty ringing the bell after my last treatment. As for side effects I have had almost none. I had a slight pinkish discharge for three days in the third week before my morning bowel movement almost like a wet fart. I even emailed the doctor after a few weeks asking if he was positive that I got the correct dose of radiation as I had no effects other than two tan five-inch circles, one on each hip where the Proton radiation went in. Just a word of caution if you are a coffee drinker. Believe what the instructions say about avoiding caffeine. I had my insulated mug waiting for me in the car for the drive home and finished the pot when I got home. I did the same thing after the second radiation treatment and about an hour after I finished my bladder said "you dummy, you should have listened" I was peeing about every 15 minutes the rest of the afternoon. Hope this helped.
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2 ReactionsThanks 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...
The reason for the higher doses is because they give you smaller doses but more of them for a longer time like 28 at Mayo. The latest theory is that because prostate cancer cells are so slow growing, they cannot repair themselves after they get hit with really large doses in quick succession like Mayo's 5 treatment protocol. I get my three moth PSA test on the 17th of July so I will let you know how it turns out. I was 2.9 when I started so it will be interesting to see how well it worked. As for your worries about urinary problems, I can only guess but after our prostates are radiated, I don't think they will enlarge anymore to make BPH worse.
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1 ReactionA year ago I was having the same insane frequency with urinating, ended up in the ER , urinary retention, couldn't pee at all. They put in a foley catheter . Had it in for over 4 months. 5 days after the ER visit, my urologist told me I have PC, enlarged prostate and it turns out I had large tumor closing off the urethra. Took a week to get used to the catheter, but it was wonderful. Slept like a baby, all night, never had to know where a bathroom was. Catheter came out after for months, been peeing like a 20 year old ever since.
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1 ReactionI 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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