44yr PSA180 Gleason9 non-metastatic. Surgery or Treatment?

Even without additonal genomic or PETSCAN tests, you fall into the NCCN High Risk Category which is defined as:

PSA >20
and/or Gleason 8-10
and/or cT3 tumor

If I had this risk profile, I would likely lean towards having surgery since removal of the prostate and possibly nearby lymph nodes and doing a pathology on them is a much more reliable indicator of the actual grade and spread of cancer. But as many sugested, getting additonal tests such as one of the genomic tests and or PETSCAN will help you firm up the decison on initial treatment options.

Because you have spread to areas outside the prostate, radiation is really the normal thing to do at this time. You could have surgery and then follow up with adjuvant radiation, as soon as you recover from the surgery. But having radiation first can resolve it without needing a second treatment. If you can get proton radiation, you really have a leg up on long-term remission.

Instead of listening to medical oncologist, who work on all different types of cancer, You should make sure you are getting direction from a Genito Urinary oncologist. They are the ones that specialize in prostate cancer and keep up with all the latest techniques.

You are really making sense with your desire to have Zytiga As soon as you are done with radiation. One of the biggest problems of being on ADT is that it causes you to become castrate resistant usually within 2 to 4 years. Adding Zytiga or a lutamide has been shown to delay the amount of time before people become castrate resistant. The median survival after castrate resistance is two years. I’ve been six years past that, proper treatment makes a big difference.

Here is more information in an article about why you should get an ARSI/ARPI to Extend your progression Free survival.

Combinations of ADT with ARPI and/or DOC (docetaxel have been a consensus guideline recommendation from ASCO and the American Urological Association since 2018 (2020 and 2023 for triplet combinations).6,19 These guidelines are based on phase III clinical trial findings demonstrating improved clinical outcomes, including progression-free survival and overall survival, with ADT combination therapy compared with ADT alone.
https://ascopubs.org/doi/full/10.1200/OP-24-00690
There’s a couple things you could consider. Ancan.Org Has a weekly advanced prostate cancer online meeting where they have people with 15 years experience, giving recommendations on what would be the best treatment. There are always at least two or three doctors in the meetings. If you are new to the meeting, you get first dibs on discussing your case. They also have a meeting for those under 60 with prostate cancer. There you can speak to and hear from other people that are having cancer at a relatively young age.

I wish you the best of luck you do have a tough decision.

In reply to @jeffmarc, thanks for passing along the information above - very helpful! For clarification relating to medical oncologist, I have only met with medical oncologists who specialize in genitourinary cancer. I was just trying to convey the importance of meeting with an entire team consisting of urology, medical oncology, and radiation oncology before making a decision.

Hi Max, I have already initiated a new claim based on my service during OIF and OEF. Thanks for the input.

Hi 4rs, thank you for your input and good luck to you as well.

Since you have Gleason 9 biopsy, thats cancer, and the tests to determine if you are more or less susceptible to have cancer has already been answered. A Pet Scan is necessary to see if it has spread. Hopefully it has not. Here are the things I learned during my cancer episode, and I am just someone who asked a lot of questions. Ask a lot of questions, period before making yourt decision. There is no question you have to act, radiation or surgery, with a Gleason 9. What you have to consider is the side effects of both procedures. Get the facts first. Surgery; if they have to cut your nerves, (and they will need to cut some since the prostate is covered with nerves) can result in ED temporary or permanent. Many people after surgery can't have erections for 12-18 month after. Ask about this. Incontenence is another concern with surgery. Leakage during laughing coughing sneezing is not uncommon even with successful surgery. Unfortunately the common response is everyone is different so there is no telling what will happen to you, but they do have statistics regarding the above.

With radiation, I believe there is less chance of either, at least in the short term. Ask your oncologist. I had radiation and have neither ED or incontenence so far. Also, I've been told that radiation and surgery have similar results. Confirm this with your dr's. Know that both procedures will eliminate your ability to produce sperm, so consider if you want kids later to store some before. Your young and should consider the life changing effects of both carefully before deciding one or the other. I wish you the best.

Once again thank you all for the support and all the awesome advice given. I got a PSMA PET CT Scan in 3 weeks. I asked around at 4 centers in the area and this was the earliest. Another Urologist (director of the Urology clinic in the city I live in) had a consultation with me and also mentioned that surgery will most likely be the best option i my case.
Both clinics i have been seen have a weekly Tumor Board, where the doctors from the different departments (urology, oncology and nuclear medicine) meet and discuss the current cases.
In Heidelberg i am schedule for the board this Friday and in my city I am schedule next week on Tuesday.
I will continue to post updates as they come in so everyone can learn from my experience.
Let's all stay healthy and strong and be positive!

I know Heidelberg somewhat, having been stationed at the US Army base (V Corps) nearby. Diagnosed with slow-growing prostate cancer in 2010 with biopsy in Spanish hospital and the Navy hospital at Rota, Spain. I am former 05 US Army, then working contract post retirement. Gleason 6; PSA 6.47. I underwent proton radiation therapy at Loma Linda Hospital in Loma Linda, California. I stayed at March AFB quarters during the 2.5 months of "every morning at 0700" proton radiation. I have read many comments about a wide range of prostate related issues on this site, hence a layman's opinion. Undergo radiation: Understand the various types and compare the availability, cost and expertise. Proton radiation does little damage to the prostate gland. If after treatment your PSA continues to rise over time, the surgery option is always available. Surgery is the "best" option, but the complications are numerous and can result in radical change in lifestyle. If you are retired, then you have TriCare for Life. If that is the case, I would recommend a place like Mayo Clinic in Jacksonville (near JAX Naval air Station). Proton radiation is expensive as the equipment cost is near several hundred million dollars. 05/11A Florida

Hey 4rs…lots to think about for sure - especially being so young and having so much time ahead of you with possible recurrence - a blessing and a curse…
Why the concern with proton vs photon if your pelvic nodes are involved? I understand the thinking about the Bragg effect and surrounding structures not being affected but to my way of thinking you almost want the entire body cavity treated since no one knows if rogue cells are outside the gland or the nodes.
The PSMA lit up the gland and the seminal lining and the nodes, but the concern should be what it did NOT light up.
And the way you are approaching this aggressively drug-wise ( which I applaud!) means you want to leave nothing to chance. Just another angle to consider. Best,
Phil

Hi @westernflyer, my problem is that the PSA is 180, and about 80% of the biopsy cylinders are affected with Gleason 9, so the cancer is very aggressive. I am a veteran but I live in Germany as an ordinary citizen and I have German health insurance. Unfortunately there are no VA centers overseas.
I heard that i can get some treatment for VA Service Connected related issues at the Landstuhl Hospital, but so far I have not had the need to.
Thank you fro sharing your struggle. If push comes to shove, I may consider flaying back to the States to get seen at the VA center. But so far the German system has provided plenty of options and in a relatively fast pace, even though I had to make lots of phone calls