I'm 71. was diagnosed 2 years ago with a then Gleason 6 with 4.9 PSA. Was suggested for active surveillance. In June 2020 had another biopsy which found Gleason 3+4 but only PSA 2.8 (that's strange). However, during that biopsy, something happened when given one of the injections. Felt as if someone was slowly pulling a string of broken glass thru my gut from one side (injection point) to the other. Though strange didn't think much about it at the time. Since then, although the symptoms are better, they have really never all gone away. Still have a weird feeling once in a while though not nearly as strong as the original but still odd and disconcerting. Was told to go see a specialist which with the Covid thing I have put off doing. Any experiences like this?
Back to the PC. I've since switched doctors and am now a patient at the Moffit center. I've had consults with the surgery department and the radiology departments (not yet with brachytherapy - not sure why! Old technology maybe?) Both say their results are best. Leaving it up to me to decide which direction to go. I really don't like surgery but radiation has it drawbacks as well, along with their being so many different types (Proton, SBRT, IMRT, EBRT, 3D-CRT etc.)! I would consider the surgery as the life expectance of it appears to be better in the long run but if they wind up suggesting the need for radiation then what's the point? So that is where I have left it and will try to figure out what is next after my next suggested biopsy 01/25, a new type for me, MRI guided transperineal biopsy. Supposed to be way less chance of infection (possible cause of my last biopsy symptoms) but need to be put out to do it. Anyone had this? What's it like?
Radiation has about the same outcome as surgery for the first 5-10 years but I'm curious, What then? I understand that radiation affects the DNA and that could lead to other cancers in the future. No one knows the future just trying to get the most out of life possible as both of my parents made it well past 95 and I'd like to get into that same category!
Happy New Year and thanks for listening. Comments more than appreciated
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marinoperna
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Let us know what the MRI-targeted biopsy says. Immediately after you get the results, have them send the slides to Epstein at Johns Hopkins ($300). He will tell you the % pattern 4 in the GS 3+4 cores, which is important for deciding if you are still a candidate for AS.
I recommend you see some actual experts (rather than the docs at Moffitt):
• Vipul Patel in Orlando for surgery
• Debra Freeman in Tampa for SBRT
• Matthew Biagioli in Orlando for HDR brachytherapy
• John Sylvester in Lakewood Ranch for LDR brachytherapy
Proton, as you know, is available at UF Jacksonville. Most insurance won't cover the extra cost because it doesn't seem to be any better than other kinds of radiation:
Hi Tall_Allen, Sure appreciate your reply. You do have me a bit concerned about the Moffitt cancer center here in Tampa. They are supposed to be experts in the field of prostrate cancer. Dr. Pow-Sang (head of the department) would have been my surgeon while Dr. Peter Johnstone the radiologist.
Any further comments on these docs?
Any particular reason(s) for your suggestions of whom to see, for SBRT, Surgery or Brachy (hadn't looked much into this but it is coming up more and more. I thought it was more of an obsolete concept).
I have been a patient at the Cleveland Clinic as well as the Mayo Clinic would either of these 2 places (M.D. Anderson as well) offer greater favorable outcomes than you suggest local ones?
Honestly I don't need this out of my body as some are stating, I just want the best long term outcome! I could put up with the ED if i had to but not sure how i would cope in the long term with continued urinary leakage or worse!
I keep hearing about Proton, Do you yourself have the feeling that proton is a waste of money when looking at the long run or just more expensive (Dr. Johnstone was heavily involved in that prior to coming to Moffitt and says the the MRI-SBRT is now better).
Any personal feelings on RP vs RT again for the long Term since you are especially informed on these things? Honestly SBRT sounded good to my layman ears.
Just because an institution is good, doesn't mean they have the best experts. You are treated by a doctor, not an institution. If you have an HMO plan and Moffitt is all you can get, it is as good as any. But if you have a PPO plan, why wouldn't you take advantage of the best doctors in your area?
Brachytherapy is certainly not obsolete, but there aren't a lot of experts around anymore because doctors can't make enough money from it. John Sylvester is one of the few still practicing of the doctors who created modern brachytherapy for prostate cancer at Hutchinson in Seattle. Fortunately for you, he relocated to Florida. Biagioli is one of the few experts who have a lot of experience in HDR brachy (the radioactivity is not permanently left inside.) I know several patients treated by Debra Freeman, and they all adore her. Vipul Patel has done more prostatectomies than anyone in the world - if you decide you want RP - he is the only one you should consider. Experience counts!
You can read my article about protons.
This is a decision only you can make for yourself. Until you have learned more, just decide not to decide.
Read those articles in the meantime. Also, you will notice that the questions for doctors begin "How many of these procedures have you done?" I hope the biopsy shows little enough pattern 4 that you can stay on AS and avoid all treatments.
Well, Just at Moffitt for my latest biopsy report. WOE, hit me in the head with a brick instead! Was at a favorable Gleason 7 (biopsy of 6 months ago) and now completely bypassed unfavorable 7 and sitting at an 8 (15% of one core Left Peripheral Gland - Grade 4 while the other core is 10% of 3+4 grade 2). So now I'm told i must do something soon. At 71 with good general health but did have a laparoscopic double (mesh) hernia, evidently making surgery a bit more difficult, I'm thinking that radiation may be my best choice. But which one? Moffit so have has suggested hormone therapy followed by my decision. Was convinced on doing HRD Brachy (appears to be better than the others for long term survival) but with my new status that may be out. Dr. Biagioli is not that far (100 miles or so) but here again Moffitt said HDR is probably out the window so searching for more options. My mom made it to 100 my dad is 96 is was hoping to get close but so far the cards seem stacked against me!
Talk to Biagioli. He may want to combine some external beam radiation with the HDR brachy. You can also talk to John Sylvester about combining LDR brachy with external beam. SBRT is experimental for high risk.
how does one get with Dr. Epstein? I'm being told I need to be a patient of John Hopkins and once a patient they (Hopkins) will then request the labs. Any way around all that? Appears i'm running out of time
A PSA that went from 6 to 13 in 3 months. I had 6 cores out of 12 positive on the right side at 85% G4, then on a special pre-RT Scan they found multiple tumors on both sides. 73 y.o. with Lymphoma LNH and many acute chronic diseases.
I have been on Lupron Depot 22.5mg/12weeks X2 from May 2020 to Nov 2020 and on
VMAT-RT 3Gy X 20Fx in June 2020 and my
PSA = 0.03µg/L and my
Testosterone = <0.2nmol/L or <0.0577µg/L or <57.684ng/L or <5.7684 ng/dL
My 2 cents, take some time, think it through, get the best experts within your travel range and then move out. Personally active surveillance would just drive me crazy. Once a year biopsies and waiting for it to spread. When in doubt I always play offense...
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