Totally confused after Onc visit today and rather alarmed

[GSDF]

My bio has been updated but in short, I was dx with 434 PSA 1 year ago. Started Firmagon and PSA plummeted to 36.2 in Dec. 2021 and descended each month until May 2022 when it began rising again to a high in July 2022 of 23.69 at which time I began Orgovyx and Xtandi.

PSA then began descending again seemingly Nadir-ing out for past 3 months at 2.28, 2.03,and this month 2.07.

My Oncologist told me last month when it was holding in the 2 range (2.03 down from 2.28) that the stability was more important than the number and continuance of the descent value. So this month when I saw that it was 2.07 I was very happy to see that stability. I just had meeting with him today and he said he was very discouraged that my PSA hasn't continued descending.

I reminded him of what he told me last month, that it's stable and low and to keep in mind that my prostate gland is still intact and asked him if some (or all) of that 2.07 PSA be sourced from the gland tissue itself. He himmed and hawwed and then thought for a minute and finally said "yes, I see where you're coming from and yes, that could be, but I'd feel better if you fell below zero".

I might add that since PSA has hit the 2 levels and holding for the past 3 months, all symptoms of the cancer have vanished. No more urine retention, no symptoms whatsoever which also leads me to believe I'm doing very well and that the sustained 2 range PSA is indeed my personal Nadir and that's as good as it's going to get and that the 2 PSA may be largely prostate tissue, and not so much the cancer?....

I value you guy's experience, knowledge and advice as this visit today rained a bit on my parade of the joy I've had, having never felt better in all aspects since my original dx....How wonderful it feels to be able to urinate again like I was 25 years old!....So I'm totally confused now and a bit alarmed.

[Tall_Allen]

You're asking if undetectable PSA has a better prognosis? Yes, of course it does. But you are doing fine right now.

[GSDF in reply to Tall_Allen]

Thank you for your reply... It was just a month ago that I was upset when PSA was still "only at two".... It must have shown in my face... Doc came in exam room saying "you look gloomy, why??" ... I said my PSA had stopped going down, still at two.... He said he didn't agree with my concern and that were looking for a low steady, stable number, and the fact that I still have prostate, the fact I'm holding, is good news....

So I left the hospital uplifted.... This month, PSA went up two-one hundredths of a point and I'm happy, show up at hospital and I said, "hi doctor, we're still doing good and I've never felt better".... He said "sorry to rain on your parade but this is not good, I was looking for lower reading".... I reminded him I still have a prostate and this is the first time since dx I had 3 consecutive stable readings and last month he told me stable low reading is fine and let's go with it and monitor....

He then said, "yes, I see where you're going here, and I suppose this is better than a sharp rise.... I retract my earlier statement"...

I'm hoping he just didn't refresh himself with my records before he came into exam room.... He looked tired and overworked but I must say, I'm a bit disappointed and still a bit confused....

Was wondering if any members here have been able to hold a low PSA above zero for significant time frame and is it indeed a good thing of having low and steady versus striviing for Sub-Zero.....

Thanks for your encouraging reply 🙂

[hansjd in reply to GSDF]

Hi GSDF to answer your question, 'any members here have been able to hold a low PSA above zero for significant time frame', I have. You can read my bio, but essentially when I started Zytiga my PSA was 1.03 and it halved in a couple of months and then continued down a bit more. It stayed around .4 -.45 for about 18 months. I asked my MO the same question as you, about still having a prostate (and mine was huge) and could that be a reason for never going lower to undetectable. She said quite possibly and agreed with my suggestion to add dutasteride and see what happens. That was 4 months ago and my PSA did drop some more but not a lot and has stayed around .35. She's OK with my PSA readings so I do think that 'it is indeed a good thing to have low and steady versus striving for Sub-Zero.....' Hope that helps. Cheers

[dhccpa in reply to GSDF]

I've had PSA of 0.5 to 0.9 (up and back down) for four years, with two outlier readings of 1.3 and 1.4 (back to back, one month apart) about 2.5 years ago. Of course, that can all change in a flash.

[Stoneartist]

I come from a similar place as you - high PSA dropping towards nadir. When a new (castrate resistant) tumour sprang out it was easy to see (see my profile) - a doubling thru 2 sucessive 3 month readings. Then I began with Xtandi and am heading slowly downwards - at present PSA=0.1. I also still have my prostate and consider anything below 0.1 as stable. PSA that low is affected by test accuracies - what we have eaten the day of the test etc. So find a number that you feel comfortable with - and any changes below that I would put in the "dont worry box"

[Jvaughan0]

Doctors' skill sets can be limited when it comes to saying the "right thing" to patients. Their mood, personality, and even what they ate for breakfast may have bearing on what bubbles out of their mouths. You don't always get consistency of thought from them. They can be so scripted in what they tell you that they have mental lapses of common sense. They don't realize how a few poorly purposed string of words can unduly bring us down or inappropriately grant relief. Listen to what they say with a grain of salt. As a person suffering from this affliction myself, it seems to me that you are feeling physically well at the moment. Put faith in the doctor's medical knowledge, not his conversational skills.

[Benkaymel]

I've been on ADT for 4.5 months and Xtandi for 2 months and my PSA on Nov 15th was 0.33 (from a starting point at dx of 13.0). I asked my Onc the question that since I still have my (enlarged) prostate, wouldn't PSA be expected to stabilise in the "normal" range of 1 to 3 for my age (65) even with the hormone therapy? He said no it should still go close to zero in time. Obviously, you started at a somewhat higher PSA value than me though.

[Jrb12]

I have always been told by my oncologist that the rate of ascent is key. I believe we look for a doubling and tripling of my PSA over a few months time. Your PSA levels seem to be quite stable and a lower number at that. I believe in my eight year battle with this disease including 2 rounds of Chemo, 2 years of Xtandi, 19 cycles of Keytruda and now Pluvicto my PSA is finally now below 1. I was told today by my oncologist that Prostate cancer treatment is a marathon not a sprint. Stay vigilant and God bless.