New to the prostate cancer club

Welcome and so sorry you had to join our club. I know you're probably still in the shock (or Holy Crap!) phase. When is your next follow-up appointment? Have you started any treatment? If you click on my name above, my history is in my profile. Other than being older and a Gleason 9 instead of 10, it sounds like it may be similar to yours. Just keep in mind that every journey is different. Just because I had certain side effects doesn't mean you will, for instance.

You might find these helpful...I did.
https://www.ucsfhealth.org/education/prostate-cancer-glossary
https://cdn.prod-carehubs.net/n1/748e8fe697af5de8/uploads/2025/11/PC-Abbreviations-.pdf

Continue learning all that you can; you’ll find that this journey you’re embarking on is much about self-advocacy and shared decision-making. There will be no one-size-fits-all solution.

You’ll be wanting to know more about the aggressiveness of your prostate cancer:
> Regarding your PSA of 13.4, do you know your PSA Doubling Time?

> Regarding your MRI/biopsy, is there any mention of cribriform pattern, perineural invasion, intraductal carcinoma, extracapsular extension, or seminal vesicle invasion in the MRI of biopsy reports?

> Regarding your PSMA PET scan, what were the SUVmax scores assigned to each of the lesions?

Next steps will be to keep asking questions and get further tests to further determine aggressiveness. Treatments can wait until you learn more fully about what you’re dealing with.

Yes, much to read, study, and prepare for. If you can find a local in-person prostate cancer support group, you should join one. There’s much value in face-to-face discussions. Otherwise, there are many virtual support groups.

so you will prob get hormone therapy+ radiation in 90 days and maybe chemo...it will be a challenge but you can do it...workout, eat healthy and try to get plenty of rest..dont worry about the Gleason stuff too much..but MAKE SURE YOUR ONCOLOGY TEAM HAS EXP w/Protate CANCER !! Lots of people on here are long term survivors and you will be too..take a deep breath..breath out and ..welcome to the club no one wants to be in !

(Homone therapy can be a number of different kinds- all have side effects...discuss carefully with your docs...if you cant tolerate one, try another..you will exp night sweats or hot flashes..etc..read up..Google ADT therapy and it pretty much sums it up..radiation..try to get proton.. you will prob have 6-8 weeks worth..try to do it close to your home..same with chemo)

Sorry to hear your diagnosis.
I began my research with Patrick Walsh, MD's book " Surviving Prostate Cancer" and the free Patient Guide from the Prostate Cancer Foundation pcf.org available in hard copy or download.
Best wishes.

@brianjarvis
Thanks for the feedback. I do not know my PSA doubling time. I've only had the two PSA tests in the month of Sept, 2025 and those were back to back just to confirm the numbers. I should receive the PSMA PET scan results this week. Thanks for the advice on face-to-face support. I think this is a good idea.

@mjp0512
I have my first treatment counseling appointment this week. I only have a Urologist at this point. I have not met with an Oncologist yet. Thanks for the links.

There are Centers of Excellence (COEs) for the treatment of PCa, and many men have sought care from these centers.
I drove 75 miles for diagnosis and treatment at Johns Hopkins in Baltimore MD.
That said, there are also many excellent local Urologists, Surgeons, Oncologists and Hospitals in many communities.
My diagnosis was a Gleason 9 and that, in part, was my motivation to travel to a COE.
Best wishes.

@lanksta25
You're welcome...please let us know how your appt. goes.

And, be advised you're going to start collecting doctors like some folks collect coins. 🤣

I am on a similar timeframe of steps. This is an incredibly helpful group of brothers and sisters. The Walsh book is really helpful. The advice on center of excellence is spot on. You can go through one, or use their second opinion services as you move forward. Here is a link to them to see what may be close to you.
https://www.cancer.gov/research/infrastructure/cancer-centers/find
Stay strong mate!

As you probably know your Gleason 10 makes your cancer, extremely aggressive. The results of the PSMA Pet scan will let you know whether or not surgery is even an option. If it has spread outside the prostate, then they usually don’t want to do surgery, they want to do radiation because it can treat both the metastasis spread and the prostate.

Very frequently it has not spread outside the prostate, which gives multiple options.

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, even with a Gleason 10.

Hopefully, you are working with a center of excellence, Because of the Gleason 10, the probability of a reoccurrence is very high. You want to work with the best doctors you can find. You need to speak to both a urologist that does surgery and a Radiation oncologist. With a Gleason 10 It would also make sense to find a Genito Urinary Oncologist to help direct your treatment. That type of oncologist specializes in prostate cancer, unlike medical oncologist, who work with all different types of cancer and aren’t able to concentrate just on prostate cancer.

Because you got prostate cancer so young you should get genetic testing to find out if it could be a factor. Does anybody else in your family have cancer? You can get it here for free, takes 2 to 3 weeks to get the results and a genetic counselor will call you. They will send you a kit that you return in the mail. You have to live in the USA to get this test for free.

Prostatecancerpromise.org

I got prostate cancer at 62, 16 years ago. I have the genetic problem of BRCA2, That causes cancer to keep coming back. I’ve had four reoccurrences. I’ve had surgery and radiation and multiple different types of drugs over the years. I also attend nine prostate cancer online meetings every month and many online webinars about prostate cancer. The more you know the better.

Since you have a Gleeson 10, you should consider coming to an ancan.org Advanced prostate cancer meeting. They are held weekly. The next one is next Tuesday at 3 PM Pacific time. If you have your PSMA Pet scan results it would be best. If you get there about 10 minutes early, you’ll be the first person they talk to and they can Give you some great advice on treatment. They’ve been helping people for 15 years. There are three doctors at every meetings, and frequently more than three.