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@sriddle1
Hi,
I am so sorry that your and your partner have to go through PC diagnosis. I understand your anguish since I am here also representing my husband.

At this point results of PSMA test are very important and with aggressive features of IDC and cribriform his Decipher test results would probably be very high. PSA for aggressive cancers often can be almost in a normal range, that was the case with my husband too. He had RP surgery about 10 weeks ago and his gleason score jumped from 7 unfavorable found in biopsy to 9 after complete pathology was done. Our urologist told us at the last meeting that aggressive cancers very often produce less PSA than gleason 7, which should be a cautionary tail to newly diagnosed or to people on AS and I do not know why that fact is not more discussed or more known.

Since your partner's cancer escaped the gland to lymph-nodes and to bladder neck and vesicles, it would be unusual that his PSA comes back undetectable and you should start exploring next steps that will be taken in near future - such as salvage radiation , ADT and possibly even chemotherapy.

If possible, go to Cancer Center of Excellence for a second opinion since your partner needs full supervision and care of a whole team of doctors and I do not understand why your hospital arranged the first post op with a nurse for a patient who has those agressive pathology findings : (.

This is all shocking, I know, just try to keep in mind that there are so many new and effective treatments available for every stage of this awful cancer and we here have many members that went through treatments with excellent results. You are doing great thing by doing your own research and trying to be informed and that is the best way to go forward ! Unfortunately that is the ONLY way since than one can demand AND get the best possible treatment with the best possible results.

Wishing you the best of luck and sending hugs < 3

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Replies to "@sriddle1 Hi, I am so sorry that your and your partner have to go through PC..."

@surftohealth88 thank you for your reply.

I am feeling more than frustrated with the care I feel he received post op. I was shocked to find out that we were only meeting with a NP for a very important post op visit. She very loosely glazed over the report, had a nurse remove his catheter, told us to make a 6 week appointment for PSA testing and that was that. I must say, I expected more from COH.

He also has been pretty much ignoring or refusing to take an initiative in this process. It’s been mostly left up to me. He seems upset and annoyed that I have been ferocious in my reading and trying to educate ourselves. I feel lost. I feel like we’re just out here trying to figure it out on our own.

We also weren’t given a proper staging of his disease which I think is disingenuous at best. I think had the post op appointment been with the doctor himself with real talk etc., he’d more likely be taking this more seriously.

I am going to request a hard copy of the PSMA scan results and get them into another doctor he has already had a consultation with at UCLA.

Thank you

@surftohealth88 where are you guys located?

@surftohealth88 question: as aggressive PC’s can sometimes present with lower PSA levels, how does this effect testing for PSA post RP? What should be expected to be seen if they were low to begin with even as it is advanced PC? Will the PSA levels tested after be accurate since they weren’t high to begin with? Does that make sense?