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@mikewo

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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Replies to "I am your Huckleberry except for your PSA bouncing around. My PSA has been between 2.3..."

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...

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?