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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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@ucla2025, thank you so much for this recommendation, I was able to go onto my local library’s page and request a hold so hopefully I will have it soon.
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1 Reaction@jeffmarc I am probably getting to tied up in what stage my partner has, etc., metastasized versus contained, etc. but once your prostate cancer left your prostate area was yours then considered metastasized?
@surftohealth88 hi and thank you so much for taking the time to reply to my post.
I listened to yours
and others’ advice of being persistent and demanding the care that we feel we deserve. I sat on hold for much of the day yesterday, but I was able to get us in to see the surgeon that performed his RP. If nothing else, it felt good to at least meet with the surgeon that actually performed the surgery and not a nurse practitioner for our first visit postop.
We also received the results from his PSMA scan and it indicated that there was no detection of cancer in his bones or other organs. Strangely enough, or maybe it’s common, it also mentioned that there was no cancer found in nodules a.k.a. lymph nodes. Since we’ve received the postop pathology, we do know that in fact, he does have lymph node involvement in addition to SVI and bladder neck involvement. The doctor told us that the PSMA scan is only 40% accurate, which is mind blowing as it’s the best most accurate scans they have to date. How wild
I was able to reserve that book at my local library so hopefully they’ll have it for me soon. I appreciate your opinion of that as well. Even though I’m not quite the reader, I will delve into this as soon as possible.
I hope my partner is as lucky as your husband has been with his PSA levels. It gives me a lot of hope and thank you for sharing that with me. These chat room/online support groups are actually quite beneficial and I appreciate all the knowledge I am getting.
Thanks again,
SR
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2 Reactions@sriddle1
One thing people find is that some doctors are not that well informed about everything. It is not unusual for them to not know the answer to a variety of questions. Urologist perform the surgery and they can’t keep up with everything going on with prostate cancer like oncologist that specialize in prostate cancer can.
If you have a GU (Genito Urinary) oncologist, they probably can answer the question for you accurately. I have a GU oncologist who can answer any question I’ve ever placed to her. She specializes in prostate cancer and knows just about everything. I know a number of other GU oncologist that are just as knowledgeable.
I’m not sure what his PSA was when you had the PSMA pet scan. If it was below .5 Then the accuracy is lower as the PSA drops. One thing people don’t realize, If the metastasis is smaller than 2.5 mm then it can’t be seen by the pet scan. A UCSF radiation oncologist gave a talk on PET scans and mentioned that even 5 mm was tough to see. To get the best answers about a pet scan, you want to speak to the radiation oncologist.
Sure good to hear you got to speak to the doctor about what happened.
@sriddle1
Yes, my cancer moved to my bones, my L4 in the spine. That makes me stage four metastatic. Mine spread to the spine, even though it was isolated to the prostate when it was removed. It then came back 3 1/2 years later when I had salvage radiation. This is because BRCA2 prevents DNA from correcting error errors so cancer can spread because of that.
Your husband had two lymph nodes that were metastatic therefore he is stage four. They did remove them during the surgery so they are no longer a threat, But like mine finally came back and spread my spine his could come back and spread anywhere since it has already gotten out of the prostate.
It gets in the bloodstream once it’s out of the prostate. It frequently goes dormant for a while when that happens.
You did get that PSA test awfully early, normally they wait around 6 to 8 weeks and at that point the PSA is undetectable. We’re really hoping for you guys to have had a successful surgery and a progression free survival for a long while.
The treatments they have today keep people alive for decades. You’ve had a great start and now you’re very well informed.
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2 Reactions@sriddle1 Hormone shot was 3 weeks ago. My only negative has been hot flashes. Lots of hot flashes. They wake me up most nights and I get several during the day. Nothing I can get through, but they/re not fun. Surgery was one year ago next week, and radiation begins in 3 weeks. Your husband is fortunate to have you with him. I'm blessed to have my wife with me through this. She doesn't have to do or say anything. Just be there. And she is.
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2 Reactions@sriddle1 My husband had a PSMA two months before his prostatectomy and another one about three months after the prostatectomy. The surgeon was able to remove a couple of positive lymph nodes but not all due to their location. So the persistent PSA after surgery was not unexpected. Keep in mind that regardless of test results, there are treatments available to help. My husband is on hormone therapy now and it is controlling the situation quite well. It’s all so overwhelming at first but you get used to it. Not exactly fun, but the shock wears off and you just get on with it. I hope you get Dr. Walsh’s book soon it’s super helpful.
@sriddle1 I have found that most doctors prefer to focus on the situation at hand. While they might find talking about the link between prostate cancer and melanoma very interesting (like we do) they don’t have time for it. That’s why we join groups like this!
@sriddle1 It was explained to us that with a Gleason 9, aggressive features, and lymph node involvement, it is very highly likely there are “micro metastasis” of the PC that won’t show up on even the best scans. So unfortunately the scans don’t always tell the whole story. Hence the need for systemic medications.
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1 Reaction@anosmic1
The Embrlabs.com Wave 2 Device sits on your wrist. Looks like a watch that upside down. It sounds cold waves for your arm that stops hot flashes. It works really great at night, I used to have the sheet get wet under me at night and this device stopped it. It also works during the day. It has two buttons one you can set for night and one for day.
They are normally $300 but I put a message in the forum about a sale where you can get it for $200. Has a 60 day moneyback guarantee.
A number of people in this form of bought them and like them. If you do get one message me and I can give you instructions for how to set it up ideally. I’ve used them for five years.