Final Diagnosis after Radical Prostatectomy- Looking for suggestions

Sounds like you probably are going to be getting salvage radiation to treat the area that still has cancerous tissue. This is frequently done.

They may want to put you on ADT to prevent a recurrence, And possibly even a second drug abiraterone or one of the lutamides.

Those are pretty common things to be done, especially if you have a Gleason nine.

This is very treatable, Make sure you’re working with a center of excellence or a Genito urinary Oncologist for your future needs. That will give you the best chance of a long overall survival.

Layman response: Lymph nodes are sampled, if possible, for evidence of PCa. If the PSMA pet scan was clear, then there was no scan evidence of PCa in the lymph nodes and if your recent hernia repair was an issue, then a choice had to be made at surgery to sample or not.

EPE can be microscopic cells, I believe, and I don't think that the surgeon can "chase" what cannot be seen. And the broader the margins cut, the more there will be a risk of damage to other functions, such as continence and erectile function.

My preop PSMA scan was equivocal/ suspicious for lymph node involvement and postop pathology raised my preop Gleason score and confirmed G 9 w/ EPE. Margins were reported as clear and the 4 lymph nodes excised and seminal vesicules were clear.

Your 1st postop 60 or 90 day PSA will tell the story. Less than .1 is the standard.

Nevertheless, my postop PSA was a "persistent " .19 , which sent me " down the hall" to the Radiation Oncologist and Salvage Radiation Treatment.

Salvage Treatment radiated the whole pelvic floor region and the pelvic lymph nodes. I also received 4 mos of ADT (Orgovyx).

My PSA has been undetectable for about 1 yr since salvage treatment and of course I am hopeful that continues for an extended period of time.

G 9 and EPE are harbingers of persistent postop PSA and /or future recurrence. And unfortunately, salvage treatment is needed in a significant percentage of cases postop.

All of my tx has been at Johns Hopkins.

Hopefully, your postop course will be better than mine. However my G 9 is driving the train.

Michael,
Thank you for responding. I am sorry to hear about your postop course but appreciate your sharing. I go back tomorrow to Mayo in Phoenix where i have been treated to get my urinary catheter removed and start this part of the recovery and weigh my options in terms of treatment and where I will go for same. My best to you. May I ask who you would recommend if I were to seek a consult at JH?

Hi Jeff and thank you. I am treating at Mayo in Phoenix I return tomorrow for the cath removal and will start down the next journey. Any suggestions from you or others as to the very best genito urinary oncologist at Mayo or anywhere else in the US. At 69 years of age and having been relatively healthy until now, I refuse to sit back and let this disease win and am open to any and all suggestions for 2nd and 3rd opinions on the best center and oncologist to hold my hand and guide me through this very scary situation.

I appreciate you Jeff.

Mayo is a real good place to get treated. I don’t know the name of a GU oncologist there. I would just ask them to place you with one

You could get a second opinion from outside Mayo. Mark Scholz In Marina del Rey, California is a good place to go to get a second opinion. He has a fixed fee, but he really knows his stuff

You can check them out on YouTube. He does speeches at PCI twice a year and the speeches are on there so you can hear what he has to say. I Know a lot of people that are using him as a second opinion

You could go to UCSF San Francisco they have an excellent prostate cancer department that has multiple GU oncologist.

You could come to Ancan.org Advanced prostate cancer Meeting, There is one today at 5 PM Pacific time. You get there five minutes early they will talk to you first and can give you some really great ideas on treatment and who to go to in your area They’ve been helping people for over 15 years and besides the three main people there’s at least two or three doctors there every Meeting. If you go to the website, you can look at video of previous meetings and find out how to attend.

My Radiation Oncologist at Johns Hopkins, Baltimore, is Daniel Song, MD, and I certainly would recommend him.

When I saw my Path report on the Patient Portal upgrading to G 9 and adding EPE (needed to look that up), I became a bit more concerned about my prognosis.

My thought would be to try to relax with a deep breath or 2 (sub scotch if so inclined).

My 1st PSA was 90 days postop, and that will provide needed information.

Best wishes for a successful recovery and I hope your appointment tomorrow goes well for you.

Hi Michael
Well I had my “little friend” removed today with a fill and pull. What a fun experience. Still no communication from my surgeon, fellow or resident but I might try your suggestion on substituting scotch or possibly some bourbon.(ha, ha). Now I start with the men’s diapers until I regain my continence. I watch the video on Dr. Song and he sounds extremely knowledgeable. I appreciate your thoughts and wish you well.

Head for a center of excellence immediately. Mayo, Cleveland clinic, ucla, John’s Hopkins, md Anderson etc. you need the best help available. I had positive margins nodal involvement bladder neck and other positive areas. You need to get help so that the cancer stays in the pelvic area and doesn’t metastasize to distant places. Many people on this forum are successfully battling local metastasis and will have more to say. God speed!