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What to do? Post RP, Gleason 9, Prostate ductal adenocarcinoma
Hi,
I am posting on behalf of my partner who is the one that is experiencing all of this.
I will preface this post by the fact that this is all been very fast as he was just diagnosed in August prostate removal surgery 10/17/25.
At the most recent postop visit, we only were met by the nurse practitioner. She briefly went over the pathology report of the surgery. She indicated that what was thought to have been a Gleason score of eight prior to surgery was actually at 9 postop and determined to be ductal in nature and highly aggressive.
My partner at this time is pretty much in denial, not really asking questions nor reading very much. I on the other hand have been ferociously reading, not able to sleep and pretty much losing my mind.
We were told that he needs to come back in six weeks for a PSA blood test. That is all that we were told. His cancer care is being done at City of Hope in Duarte.
In addition to the Gleason score of nine, ductal presentation with crib of form patterns, the report indicated that there was bilateral seminal, vesicle invasion, bladder neck invasion in 2/9 lymph nodes were positive for cancer.
I am basically coming on this chat group to find similar or any helpful recommendations and support.
I guess my question is right now, other than waiting for his PSA blood results in six weeks, what else should we be doing? We are also waiting the results from a PSMA scan that was taken before his surgery and have yet to see results from. He also has not had any genetic testing done at this point.
I apologize for the rambling in the incohesive post.
Thank you in advance for any knowledge, encouragement, or other.
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@brettiquette, thank you very much for relying to my post.
Yesterday and today were quite the days. I spent most of yesterday calling around to get his PSMA Scan results, demanding a post op RP appointment with actual doctor that performed the surgery, etc.
We were whiplashed emotionally too. After getting the scan results, it indicated no nodule involvement, bone or other organ involvement. Well, come to find out today at our appointment that the PSMA Scan is only 40% accurate and of course the post op RP pathology was more accurate. He does in fact have 2/9 affected lymph nodes, SVI, bladder neck invasion. Ugh.
I was proud of myself for being persistent and getting him an appointment with actual doctor a not the NP. We at least felt like we had a better understanding of his condition etc.
They automatically had him do his PSA bloodwork done before the appointment today which showed some detectable PSA. Doctor said that today’s PSA is not as accurate as it will be at the next collection date of 12/9/25. He said it’s too soon (2.5 weeks post RP) to have an accurate number at this time
Wow, the radical emotional whiplash of having a brief moment of hope only to realize the scan results aren’t nearly as good as actual pathology. I guess the good news is the scan didn’t show any cancer in his bones or other organs 🙏.
I am just getting back to all of you kind people that took the time to comment on my post.
Thank you kindly,
SR
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2 Reactions@jeffmarc, hi and thank you for reaching out to me.
We had quite a day today. After receiving the PSMA scan results, we saw that the scan didn’t detect any nodule, bone or other organ involvement only to be corrected today at appointment with RP surgeon that the scan is only 40% accurate. Of course, the results from the actual pathology of nodes, etc are most accurate. Ugh. Whiplashed. My hope and joy yesterday was unfortunately lost today at our appointment.
He has an appointment again on 12/9/25 to test PSA. Next step will be determined at that point.
Praying hard.
@jeffmarc, I was so persistent yesterday, waited on hold for a long time and demanded that he be seen by the doctor. They made it happen and we were able to meet with him today.
It wasn’t that great of news but it was reassurance to meet with him knowing he’s the best one to speak to post op. I also feel like we were able to establish a bit of rapport.
He’ll be back for next appointment 12/9 for a more accurate PSA test. From there, will be the deciding factor of what his options are going forward. Most likely, radiation + hormone therapy?? We are also waiting to have him get genetically tested and those results.
Thanks again for sharing your story and experience. I greatly appreciate it.
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1 Reaction@jeffmarc, strangely enough when I mentioned to the doctor or asked if there could have been a correlation between his late brother’s PC and Melanoma, he dismissed that as a possibility. I have read that there is actually in fact a connection between the two as you also mentioned. Strange.
@jeffmarc, I mentioned the day fact that his mom died of colon cancer, his brother died of melanoma cancer and also had a RP with 12 sessions of radiation. He agreed that I’d like him to also have genetic testing done to determine if he carries the BRCA1/BRCA2 genes. He agrees and sent for the testing to be done.
@ucla2025, hi and thank you for taking the time to respond to my post and questions.
Had your husband had a PSMA scan before as well or just this last one?
We just got the results of his scan and it whiplashed us. It noted no nodule involvement nor bone or other activity only to be told today (by surgeon that did RP surgery) that th scan is only 40% accurate. Of course the actual RP pathology would be the most accurate. That did indeed verify that 2/9 nodes were shotty, SVI and bladder neck involvement. Ugh. A blow to our hope we had thought we were getting. We are of course still optimistic that the scan didn’t detect any cancer in his bones or other organs.
I sat on the phone much of yesterday persisting he be seen by the doctor that performed his surgery. They were able to get him in today. That made us both feel better about starting a rapport with an actual doctor and not just the nurse practitioner.
His next PSA test will be on 12/9. That will determine the next steps to take.
Thank you again so much for taking the time to share your experience and advice.
Kindly,
SR
@ucla2025, interestingly, enough, I had mentioned that my partner’s Leight brother had prostate cancer, followed by dying from melanoma, and he kind of brushed it off as not being correlated at all, which I thought was interesting. I have read that in fact, there is quite a bit of correlation between the two so I’m unsure why he answered me that way.
@anosmic1, hi and thank you so much for taking the time to respond to my post. It’s comforting nonetheless just to hear that other people are also dealing with something so difficult.
I relentlessly sat on hold yesterday and demanded that the actual doctor that performed his surgery, see him in person since the only visit he’s had postop had been a nurse practitioner. We were able to see him today and it was comforting nonetheless to at least meet with the doctor.
They did a standard PSA blood test today and it did show some PSA however, the doctor did say that because his surgery was only 2 1/2 weeks ago that the accuracy wouldn’t be as accurate as it will be when we come back on 12/9. At that point, I guess will be the deciding factor of the next steps in which options they recommend. I’m pretty sure it will be radiation and hormone therapy. How was your experience on the hormone therapy? I have heard such horror stories about that but if it’s what’s necessary, I guess that’s what we’ll have to be.
Please keep me updated as everyone’s experience is very helpful and hopeful.
Kindly,
SR
@anosmic1 I also wish you the best of luck with your radiation treatments that will be starting soon.
@zash15 hi and thank you so much for taking the time to write such an extensive response to my original post. Wow, it sounds like both your husband and my partner are tracking so similarly. I can only hope to have the luck that you both have had so far I’m sure not without challenges. It gives me a lot of hope to read what you have written. Right now, I am just feel so scared and filled with immense anxiety and fear. Your husband‘s response has me hopeful.
With all those treatments that your husband has had so far, how have they affected him emotionally and physically? Has it just been awful? Or is there a chance that it doesn’t affect everyone quite the same? I am assuming you guys have weighed the pros and cons and had decided to go ahead and do these modalities and have been given such amazing results. This gives me such great hope in lessons, my fear and anxiety immensely. Thank you so much again for sharing your husband’s experience with me.
kindly,
SR