64 and recently diagnosed with prostate cancer, options?

Welcome and really sorry you had to join our little group. Next step would be PSMA PET scan to determine if cancer has spread outside the prostate. Treatment determination can't be done effectively until that happens. You can click on my name to go to my profile. Overview of my journey is there. Gleason 9 here also and be assured there is lottsa life after diagnosis. It just might change a little. Lots of good folks here and we will all tell you, "Hang in there. You got this". (even though your head is spinning at this point)

1) Get copies (full copies) of all test results.
2) Second opinions are not an insult to your doctor. (And if they are, too bad.)

Gleason 9 is an aggressive cancer. You need to be an aggressive self-advocate to battle it. Time to go back to school and study up.

Here's a couple places to start:
https://connect.mayoclinic.org/discussion/prostate-cancer-related-abbreviations-what-acronym-would-you-add/
https://www.ucsfhealth.org/education/prostate-cancer-glossary
https://www.youtube.com/@ThePCRI/videos

Definitely start working on finding a very good treatment center and Doctors.

Your Gleason nine amplifies this need, since treatments will be needed.

I would not hestitate traveling 4-8 hours to a good treatment center, if your initial visits/tests were not at an excellent treatment center.

You do not want to wait on others to make decisions. You want to be making phone calls and pushing to obtain as much information and see the best specialists (as possible).

I am in the middle of this journey with a low/intermediate grade lesion (lower than your gleason 9).

October 6, 2024, I reviewed my biopsy results with local urologist. His recommendation was Active Surveillance. October 8th, I called City of Hope and asked to see their best surgeon (networked with others to get a Doctor’s name). October 14th was able to see this Surgeon and an incredible Radiation Oncologist.

In my case, there was not a need to move that fast. Only sharing as an example. I made one phone call on October 8th to City of Hope. It was very easy to begin the 2nd opinion step.

I had a phone consultation yesterday with a specialist 8 hours away to discuss possible focal treatments.

In your case, don’t wait. Make phone calls.

Best Wishes.

Thanks for information, still processing info. Looks like Gleason 8 on 4 of 12, Gleason 7 on 2, all on right side, left side benign. What is best way to find out if my Urologist and/or treatment center is good? Limited options here in Savannah, Ga. Mayo clinic in Jacksonville, 2 hrs. Not sure who/how to initiate other specialists. Starting to research.

@lwhines

You have two good choices from my limited knowledge.

Mayo in Jacksonville and City of Hope in Newnan Georgia.

I would not hesitate to drive from Savannah to either of those locations.

As you know, Gleason 9 is the most-aggressive grade of cancer, so the sooner and more decisively you and your medical team act, the better the outcomes.

They may recommend going on androgen-deprivation therapy (ADT) right away to temporarily suppress your testosterone; that will often hit the pause button on prostate cancer and give you time to consider your options.

I'm glad they're planning genetic testing, and as others have mentioned, scans (MRI, CT-contrast, bone scan, and/or PSMA-PET) are also essential to try to detect if the cancer has already spread, though they can all miss stuff. There is currently no test for individual cancer cells in your bloodstream or bone marrow, so the tests can find cancer spread only after the cells have formed small tumours.

Best of luck. You've got this. Your family and friends have your back (and we do here, too).

Here's a book that many here in the forum have recommended. The latest edition is 3 years old now, and treatments are evolving fast, but most of it is still applicable. It has chapters covering all of the major prostate-cancer scenarios and treatments:
https://www.amazon.com/Patrick-Walshs-Surviving-Prostate-Cancer-dp-1538726866/dp/1538726866

Others have covered many of the things to consider.

Were any of these things found in the biopsy intraductal, cribriform, Seminal vesicle invasion, EPE or ECE. (Extraprostatic extensions extra capsular extensions). They can make the cancer much more aggressive.

You need a PSMA PET scan. Has one been ordered for you? Speak to your doctor about this, you want to find out whether the cancer has spread outside the prostate. If it has spread outside The prostate, they usually want to do triplet therapy if there is a lot of spread, That involves chemo, ADT And an ARPI drug.

You’re going to have an option of surgery or radiation, The PET scan Can show whether or not it has spread outside the prostate and if so, they usually don’t do surgery they do radiation.

1. Based on my experience, I suggest an MRI to conform or disconfirm presence of cancer cells. Most better hospitals have MRI machines that can verify the presence of cancerous cells. That saved me from a barbaric prostate biopsy that my urologist was pushing because he said one prostate node was hard. That was over 10 years ago. No prostate problem to date.
2. FYI, from a great site, The People's Pharmacy
https://peoplespharmacy.us8.list-manage.com/track/click
Regards,
Sagan

@lwhines

PSA level, testosterone level?

Hang in there, brother, don't lose heart. The most important thing is to start the right and timely treatment! Post your test results here. We're with you!

@lwhines I wouldn’t hesitate to drive the 2 hours to either. I gladly drive about that far for my 6 month follow-ups at Mayo Rochester. It is not just about your first treatment, it matters for if there is recurrence. Centers of Excellenc are going to be up to speed on all the latest options I made one call to the urology dept at Mayo and they will walk you thru getting a second opinion.

@lwhines
As big a fan, as I am of the Mayo Clinic in Jacksonville, I would get an opinion through a telehealth appointment from them, but be treated at another facility if you are choosing radiation. I had four telehealth appointments to get opinions and two physical visits as well to Radiation oncologists all of whom were either trained at centers of excellence or working at centers of excellence. I was treated by Orlando Health and my radiation oncologist was trained at MD Anderson. They have both Proton Therapy and the Mridian machine. The Mridian radiation machine has a built-in MRI, which was key for me as it meant less side effects and greater quality of life. I had five Radiation treatments with that machine. That machine was available in Miami and also at the Moffitt Cancer Center, although there is a side story to that with them and would require a private message if you wanted to hear it. In any case, the only other machine that has a built-in Mri is the Electa unity.

There is as you can see a great deal of information to absorb, but you are in the right spot because all of these wonderful people here will give you their true experiences of whatever it is that they used to treat their cancer. It is definitely not a black-and-white decision. I narrowed my decision down to either Proton Therapy or specifically the Mridian machine. I finished my treatment in February 2023.