Diagnosed Yesterday 04/14/26 - Gleason 9 treatment

If I was 54 when diagnosed, with a clean PSMA PET, I would choose RP every time. Unfortunately, I didn't get that choice, nor am I 54. (click on my blue name for complete profile)

As far as second opinions go, if you give a general location as to what part of the country you're in, we can steer you in the right direction. Unless you go with remote (not a fan, I like looking the doc in the eye) Or you can check here: https://www.nccn.org/home/member-institutions
Best wishes.

At your age, a lot of people say they would prefer surgery because you can get radiation after. I had surgery at 62 and had to have radiation four years later. Didn’t stop there, I have BRCA2 so it keeps coming back. Still around 16 years later, even though I’ve had four reoccurrences. The drugs we have worked great.

When I had surgery, they did not give me ADT after Because I was only a 4+3. Gleason nine they frequently want to give you ADT for at least a year if not two. A lot of it depends on how well the surgery went.

I have a list of NCCN recommended hospitals if you give your location, I can tell you whether or not any of them are close.

Here is a link to a person that’s talking about newer techniques, and doing surgery. Techniques that give you a better chance of being continent and having an erection after it’s done. These are things you could talk to your doctor about.
https://connect.mayoclinic.org/comment/1548188/
While you have mentioned some of the advanced problems that can occur I see some missing. I wonder if anything was mentioned about them in your biopsy. intraductal, ductal, large cribriform, or ECE. (extra capsular extensions). They can make the cancer much more aggressive.

@mjp0512

Hello, thank you very much for your reply. I appreciate your time and every word.

Due to my location and commitments I cannot travel in the near future so I would like to get a second opinion remotely. I have all the labs, mri, biopsy, etc files along with Doctor consultations and notes. I do not have the biopsy slides. Also the slides were sent out for genomic testing I believe. I may be able to get additional information but I just received these files last night.

What is the gold standard for remote second opinion in your opinion? JH, UCSF? Not sure where to look.

Again many thanks for your time

@jeffmarc
Thank you for your time and sharing your experience.
As far as I know the biopsy slides only included adenocarcinoma which is vague and not ideal, I did immediately ask the urologist about the Cribriform but he did not answer, he said the slides were sent for genomic testing. I will add Ductal and intraductal to my query Thank you!! Also There were no Extra capsular extensions.

@byelliq6 - Jeff probably has more info on remote SOs than I do. I will say my second consults have been at Kimmel @ JH but they were in person. No complaints and would easily recommend but, I know nothing about their remote procedures. Pretty sure I'll be heading back down there once my follow-up PET, along with CDx, results come back but that may not be for a couple months.

What part of the country do you live in? Consider that all your commitments and location could be small in the big picture of years ahead of you living and living with potential side effects and whether seeing a surgeon farther for very short term inconvenience outweighs the opposite. It is so important today that regardless if it is surgery or radiation, technology and techniques are changing for the better and absolutely affect end results. You are going to have all the pre diagnostic work ups complete with your genomic testing. Second opinions are crucial. Overall you might say I had five. My urologist had his say, but then I consulted at two major hospitals, eventually getting opinions from two surgical oncologist’s and two radiation oncologist’s.

@wheel1
I am as remote as it gets in the world. Remote distant Alaska. Just got back here, as I mentioned I have all or most of the files any competent UO or RO would need including most images. Me travelling for two-three days each way to get to sit in a room to review these files doesn't make sense and so I am searching for a telemedicine or virtual consult. I could do it by email, phone or zoom/proprietary conferencing.. ETC. this is not unreasonable. Is there an expert somewhere out there that can do this at a centre of excellence? where?

If I was down in the lower 48 I would agree with your statements above.

Most likely I will have treatment in the lower 48 most certainly but at this point I want a second/third opinion on the treatment path or options based on the data in the next week. If that is not possible just tell me.

Thank you very much for your time!

@byelliq6
Definitely your approach for the opinions in your more unique geographical circumstances are appropriate. Since you acknowledge that you would likely undergo your treatment in the lower 48, I would focus obtaining my second opinions from hospitals in the area you might travel to. In your case getting all the copies of your records for each physician review is the time consuming part for you, so everyone has everything, without waiting each time for a return of your records to forward to another physician. You have been obtaining all your tests fairly timely through your new urologist who seems pretty up to date

@byelliq6
You could request a second opinion of your biopsy. That might give you a lot more specific answers to what’s going on.

They do charge for it Dr. Epstein charges $500 but you can call him on the phone and he will talk to you for as long as you need about what he found. He will arrange to get what he needs in order to do the biopsy from your medical center.
https://advanceduropathology.com/
The Mayo Clinic will provide you a second opinions remotely. You could start here.
https://www.mayoclinic.org/diseases-conditions/prostate-cancer/symptoms-causes/syc-20353087

@jeffmarc
Again, Jeff, thank you very much for your reply. I really appreciate any and all help!