My surgeon was highly recommended; however, he did it robotically when robots were quite new 18 years ago. I had it done on a Tuesday afternoon, released on Wednesday, and Friday I spent a couple of hours on my waverunner in San Diego Bay.
But that is such low amount of pattern 4 cancer (only 5% of a single core) that he can easily stay on active surveillance. I suggest he get a second opinion on his biopsy from Jonathan Epstein at Johns Hopkins:
Epstein will also tell him what % of the 3+4 core is pattern 4.
After he gets the biopsy slides back from Epstein, he should also obtain a genomic test on them (Decipher or Prolaris). He should also have a germline test, like Color Genome Dx. I can see why you are concerned, given your own experience, but there is only really a very small relationship between close kin on phenotypes.
Please assure him that he has plenty of time to make an informed decision, a year or more.
Meanwhile, here are strategies that have been tried to extend time on AS:
I'm an example of mostly 3+3 with "some" recently discovered G4, but unclear how much. I had doctor Epstein give me a second opinion. Turns out my G4 was less than 5%. Dr Epstein said I could make a very strong case for staying on active surveillance as long as I get regular check ups including a yearly MRI or biopsy.
That was a year ago and my recent biopsy shows "stable".
Epstein said he would think very carefully about any traditional therapies like RP, etc, due to long term side effects.
Based on what you have posted it sounds like all options are open to you including AS. I would definitely talk to a RO and someone experienced with AS. I am surprised your urologist didn’t suggest that as an option
You might want to consider a comprehensive cancer center to get a second or third opinion
By ordering a 68Ga PSMA PET scan your RO will exactly see where your cancer is in your prostate and how agressive is from the SUV max value without a need to biopsy a prostate:
By biopsying your prostate they only see the agressivnes of the cancer from the biopsied location, but with the PSMA PET scan they see every location. Therefore a PSMA PET scan gives a much better picture about the agressivnes and the spread of the cancer in your prostate.
I would feel much better to continue an AS after a PSMA PET scan (of my prostate) than just to relying on a few biopsied spots in my prostate.
Additional studies should give us a much better appreciation for the usefullness, or not, of a PSMA PET for initial diagnosis and treatment decisions.
I do have a basic question re assigning a Gleason grade ?? Say someone, eg yours truly, had an initial biopsy that found nothing in 6 targetted biopsies to an MRI PIRADS 5 area, and of 12 additional systematic biopsies, found < 10 % of 3+3 in one core, and one core with < 10% 4+5. The PSA was 7.5, and a few months later, A PSMA PET found SUVMax of 8.2 in the prostate....no metastasis. Is this really a very high risk PCa???? Say RP has been done on a case like this.....on what basis is the patient downgraded, as I notice that three Grade Group 5 men were downgraded post-RP in this study. Is not a person's Gleason Grade based on the biopsy core with the riskiest looking core sample.....it certainly was for my case......16 benign cores, one core < 10% 3+3, and one core < 10% 4+5......so my final biopsy score was Gleason 4+5 = Grade Group 5? How could that be downgraded based on post-RP pathology????
Thanks in advance for enlightenment re this question!
But I would be very scared with a Gleason score of 9 myself.
Did you have a PSMA PET scan at a competent place?
I believe the Gleason score of 9 is more important than the SUV max value of 8.2. (i personally would interpret that way for myself, but I don't really know.)
Of course I fear cancer!!! Also fear all the potential immediate loss of QOL from the ADT and radiation......yes, I'm assuming the Gleason score more important than the PSMA SUV.....but we don't really know as studies of that will be a long time coming, sadly.
Defintely rather have a lower SUV for Sure!! I'm already osteopenic T -1.9, so very discouraged per doing ADT......Mom had 2 broken hips....horrible. Neither Doc ordered DEXA scan......i had to ask for it...same with PSMA PET scan !!! Same with sedation for my biopsy...... not that impressed with Docs I've encountered so far...I guess they're too busy?? Maybe I expect too much???
" There was a moderate correlation between the SUVmax values and grade groups (Pearson’s ρ=0.50) (P<0.001) obtained from biopsy reports while a strong correlation observed between SUVmax values and grade groups obtained from the final pathology reports (Pearson’s ρ=0.66) (P<0.001) (Fig. (Fig.2).2). The mean SUVmax value for grade group 3 tumors was 13.3±8.5 and it was significantly higher than grade group 2 tumors, which was 7.4±4.6 (P<0.001). The mean SUVmax values of high-risk patients according to the final pathology reports were significantly higher than those of low-risk patients, which were 18.9±12.1 and 7.16±6.2, respectively "
I don't think there is anything from the rsults that would let me rest easy about my high risk diagnosis......a small number of high risk patients, a wide range of SUVmax values for those men, and certainly no long-term cure results compared to prostate SUVmax results...which would be the really important study, but many years before we'll know it seems. I would definitely rather be on the low end of SUVmax, which I am for the few high risk men studied here. A top surgeon at MSKCC suggested I might havea genomic test for my one core of < 10% 4+5.....but the result of that test wouldnot be definitive as to need for treatment..he suggested perhaps a lower genomic score might make me more comfortable with a shorter duration of ADT as part of radiation treatment. I don't know......so much is really hope and a prayer !!
A lot of men in these PCa forums credit this or that for good long-term results both cure-wise and regarding side effects. Maybe, but I'm not convinced that luck isn't just as important?
If you have to use ADT can you use Degarelix? I am using it for 4.5 years and just now I turned osteoporotic.
I believe that if you use Firmagon injections for 2 years after stopping it your testosterone levels may return to normal levels quicker than after stopping lupron.
I am not a doctor therefore double check this information, but I believe somebody said this on this forum.
I wish you luck and If I were you I would be for 2 years on Firmagon injections waiting until my prostate cancer dies out after radiation.
I just finished SBRT of my prostate with the MRI Linac.
5 sessions 38Gy to the prostate.
My PSA dropped from 1.4 to 1.2 after 4 sessions.
My prostate SUV max value was 14 on the 68Ga PSMA PET scan.
I don't have any visible mets on the PSMA PET scan nor on the FDG PET scan and I made a decision to kill the CRPC with radiation in my prostate so I can continue with Degarelix injections.
My intention is to do the Guardant 360 CDX liquid biopsy and to follow the progression of my cancer on the molecular level.
The liquid biopsy will probably not give any useful information but it will be still interesting to see the results.
It is difficult to rely on the PSA alone, or even on the PSMA PET scan results to make a decision about the cancer treatment. Sometimes the spot on someone's lung needs time to turn PSMA avid lesion even on the most sensitive PET scans etc.
Therefore the liquid biopsy could be a security layer to make a treatment desission.
I can do a new PSMA PET scan in about a year and see if there are any visible mets?
If the PSMA PET scan visible mets will be safe to SBRT with the MRI Linac than I will do it. My thinking is that that way I may be able to get rid of the CRPC.
Of course it is only a plan and as you just said we need to be lucky also.
Thanks ! I just typed a longer response, but something is happening repeatedlyhere at HU the last few days..... suddenly I find my reply vanished and some message about my post search was unsuccessful...more than frustrating !!! Mayb e I'll attempt a more thorough reply later....lost patience right now!!
Ok.....my cursor must be moving somewhere else as I type and look at keyboard.
In your bio, you mention avoiding local treatment.......do you advocate that for all men, or just men who have been found by scan to be metastatic? were you metastatic at initial diagnosis...your treatments would seem to indicate so?
I started to have some problems with urination and asked for referral to the RO. It was done according to the agreement from 4 years ago between my MO and RO that I will contact RO ones my PSA starts to rise.
RO ordered PSMA PET scan and my only visible cancer was in my prostate with SUV max value of 14.
I didn't have any visible mets on the PSMA PET scan. I also scanned myself with FDG PET scan in order to see if I have any PSMA negative visible mets.
After the realization that I don't have any PSMA positive nor PSMA negative visible mets I made a decision that I will SBRT my prostate.
TA agreed that in my situation irradiation of my prostate will actually excited my life.
I can't give you tips about the insurance in your country. You should make an effort yourself.
forgot that you're "down under " so, you weren't initialy diagnosed as metastatic...you say PSMA PET shows nothing now? cept prostate itself. Or, you had visible mets previously, but they have disappeared on latest scans?
At the start I had 4x 68ga PSMA PET scans. I started Firmagon injections and after 2 months I started early Docetaxel chemotherapy according to the recommendation of my RO and a board of urologists at my local hospital in Darlingurst.
I had of course a CT scan of my spine and a nuclear medicine bone scan first in order to get the diagnosis.
I had about 15 visible mets.
Now 4.5 years on Firmagon injections I don't have any visible mets but I had a CRPC in my prostate. In order to continue only with ADT I decided to irradiate my prostate in order to get rid of the CRPC in my prostate.
I am now osteoporotic. That is my problem and I should see the endocrinologist soon.
all makes sense.....and good results...knocked down those spots!!! But, now osteoporosis ..probably caused by ADT ?? Did you have a DEXA bone density scan anytime prior to treatment, or at an intermediate time during the 4 years? Results? I guess if you had a baseline number you'd be more certain that was caused by ADT.
I'm already osteopenic with a t score of -1.9....over next 10 years, 13% risk of major fracture, and 7% risk hip fracture.....I don't know how much of that risk is due to my Mom having had hip fractures on both sides....the last one she died, but we will never know conclusively that the fracture caused her death.....an accident, and shhe wasn't discovered for 2-3 days after it happened......81 years in her own garage.....sigh!!!!
Beautiful Thanksgiving day here !! Do you have anything similar there?
Well, hopefully the younger generations will do better than the older have ???
I see the possibility...if they can overcome the negatives of the internet and only take dvantage of the positives...but human history suggests that may be difficult? Conspiracy theories, denial of science, not understanding what science even is.
I admire anyone who has survived as an immigrant...my wife is from the Philippines, and very different culture there of course.... in a number of ways, beter there, poor though they may be.
Bless you and yours of all cultures, and PEACEand Harmony to the world, especially to those whose countries are experiencing war and dire poverty......and the rule of dictators!
Hmm... 4 years ago my dx was Gleason 9. However, miraculously I was stage 3.
Went to MSK and had HDR Brachy, 25 days if IMRT and 2.5 years of hormone therapy.
In the summer of 2021 they scanned everything and not only was there no evidence of any metastasis, all of my organs were deemed "unremarkable" (good!).
Given the life that I've lead, that in itself is remarkable!! 🤔
Next month I turn 74 and feel great. NEVER give up hope!
Best
Well RP surgery is the most invasive and incurs the highest risk of side effects. I would suggest seeking a different treatment. Too many people rush into that at their urologist's suggestion. That's what urologists do -- RP surgery! Dr Scholz calls this phenomenon "Invasion of the Prostate Snatchers". He wrote a book on it, with that title.
Recommend a 2nd opinion, and other procedures, such as focal ablation, dependent on lesion dimensions and location. But worth looking into, anything radical at this point is too Radical. JMHO
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Prostate Biopsy Results
Followup on friend I mentioned. 
Uro and Surgeon Recommending Focal Cryoablation
Here we go.......
Gleason score change from 3+4 to 3+3 with perineural invasion noted under Active Surveillance 
