What to do? Post RP, Gleason 9, Prostate ductal adenocarcinoma

@sriddle1 Hi, the biggest side effect he dealt with was fatigue. He learned it was okay to absolutely do nothing on some days and take naps as needed. He is working on managing his weight gain. Occasional hot flashes weren’t too bad for him. Emotionally, the knowledge that PC reached a lymph node has been a burden, and he continues to be on an emotional roller coaster, but he has gotten better. We keep reminding ourselves, as others have kindly shared, there are more treatments if needed, and to appreciate where we are in the moment. Best of luck on your journey.

@brettiquette Fatigue was the hardest side effect for him, but he learned to manage it. His blood pressure and weight also increased, but he is hoping to get off the blood pressure mediation now that he is no longer taking Abiraterone. Overall, he tolerated the treatments fairly well.

@sriddle1 I’m separated from my wife and she doesn’t help at all.

Sorry to read of all of this. It sounds pretty ominous with bladder neck invasion, "both" seminal vesicles invaded, Cribriform glands, and lymph node invasion. Did he have a PET Scan prior to surgery? Is that how it was determined that it was in the lymph nodes? Hopefully there was no Gallium-68 uptake in the bones. I hope the surgery included removal of the lymph nodes...it sounds like it did. Sounds like he will go to 40-days-straight of radiation. Was there anything in the pathology report about "surgical margins"? He likely had that since it spread to the seminal vesicles (Extra-prostatic Extension or "EPE"). Surgical margins happen in 10-20% of surgical patients. It means the urologist did not remove "all" of the cancerous tissue, so there is an increased risk of the cancer returning within five years, especially with seminal vesicle invasion. I wish you and your partner good luck. You both might benefit from counseling/therapy understanding what the future will likely be.

@rlpostrp

The scan was done prior to the RP and indicated no nodule involvement nor other organ or bones.

It was the surgical pathology that indicated the invasion of 2/9 lymph nodes, SVI, and bladder neck invasion.

The surgeon mentioned that the PSMA scan is only 40% accurate in detection. Absolutely wild.

Yes indeed. I have recently written here, that even the Gleason Score is the "small tip of a very large iceberg" lurking below what appears to be "calm waters." I even asked my urologist early on: "Can my lower-Intermediate Risk Gleason Score of 3 + 4 = 7 (only 6-10% of cells were scored "4"), actually misrepresent a much worse status of the cancer?" He said "no...don't worry...we caught your case early." That all changed with the post-RP pathology report. He then said: "it seems that your cancer is a more aggressive form." I was SO ANGRY. I challenged him on what he said before, to which I replied: "I never said that." UNREAL. He also told me that "Prostatectomy is 100% curative." He later said: "I never said that." I said "you most certainly did...where else and why else would I be able to conjure that quote if you never said it?" He gave me the death stare. My life is in his hands, so I will be less assertive going forward.

@sriddle1

Yes, unfortunately no test shows what is really going on with 100% certainty but knowing that a test is just 40% accurate is really disheartening. PSMA also can show false positives which is also very concerning since false positive can cause unnecessary treatments or over-treatment. Only full examination of removed gland shows actual status of the PC but still not 100%. There could be some micro metastatic clumps of cells that escaped the gland and there is no way to know IF they escaped or WHERE they went. That is why even patients with low gleaoson score and perfect margins still sometimes develop BCR down the road.

You mentioned that you are "stuck on staging" and it is completely understandable - one tries to grasp the extent and meaning of it all and is looking for any positive detail in avalanche of information that was thrown at you. I remember reading 30 scientific papers with average of 10 pages each and than holding onto one single sentence that showed some "positive" data that gave me some hope - we do what we can to stay sane and strong.

You are doing great < 3 . In a very short span of time you learned a lot and managed to be excellent advocate for you partner ! I am sure that he will now get super care and correct PC treatment with your help and will have great results in the end : )

@rlpostrp
When I was only 3+4 after biopsy, my doctor figured that the surgery would cure me. When it showed up to be 4+3 after surgery, they still were not worried. When it came back 3 1/2 years later it was a surprise to them, but they said radiation would be the fix.

It wasn’t until 10 years after surgery that I found out I was BRCA2, So any promises they give would be factually empty.

There are so many different things that can result in the cancer becoming worse, But the doctors like to think they’ve got it, with that next treatment.

First, we are with you! This group is incredibly supportive. I too post for my husband. He rarely talks about what is going on. He is Gleason 9 which has broken thru the capsule and the cancer is in his seminal vesicles, but no lymph nodes. The urologist after the biopsy would not consider surgery so we just finished a course of radiation, abiraterone + predisone and Zytiga. It is not easy on anyone - you or your husband. Everyone patient is different but it is good to share info. We go to the doctor every 3 months for the same reason: to see if the PSA has elevated. My husband does not like to talk about any of it, and defers to me at the oncologist appointments. It’s ok. I don’t mind at all. So we are on careful watch. With you and your hubby!