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PSA Rise After ADT
I've been posting and following a few months now. I was stage 4a, Gleason 9, Decipher .99.
I've had prostatectomy, followed by radiation and ADT (Orgovyx) I was on ADT for 2 1/2 years total-- for 26 months after radiation. MY PSA has been undetectable (< 0.01) for this entire 26 months.
My Drs wanted me off ADT and I stopped the Orgovyx in July. I've got my first labs since then coming up tomorrow. My question is this-- if and when it should start to occur, how long do I wait for my PSA to go up-- do I wait the usual until .1 or .2? It seems to me there's no reason for that approach. My PSA has been < 0.01 for over 2 years so if it starts to go up now even just a little bit, that's a sure sign that something is going on. Why wait?
What's your experience-- if PSA starts to rise after surgery+ radiation+ADT, what are the best treatment options?
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I would do PET scan before going back on ADT...many reasons for PSA to rise...and you said you stopped ADT..so naturally there may be a small but gradual rise in PSA as your body starts processing testotstrone again...but the PET scans are pretty good about picking up even small cancer seeds..location..where in many cases, they can be addressed with pin point radiation...
btw, what was you exp with orgovyx for 2.5 yrs !?
I had no major issues with Orgovyx. If it were up to me, I'd still be on it. Long term use and essentially having no testosterone does put you at risk for osteopenia and osteoporosis.
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3 ReactionsI have been on it ( ORGOVYX) for 2.5 months...the first month I was on Erleada and Orgovyx which I couldnt tolerate..made me feel like I was dying..however, the oncologist took me off Erleada and promised after a month or so, Orgovyx would be tolerable...and he was right, thankfully. So as things stand, I feel I can do a year or more Orgovyx..the hot flashes are a bit of a nuisance but otherwise feel ok....hopefully I am not ADT resistant..( how do you know?)
hope you dont have any relapse and can move on with your life !!!..my PC journey at 73 was prob worse time of my life but seem to gradually be gaining my footing again..
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1 ReactionIt’s very common for somebody to stop ADT when they have a .01 PSA for a long period of time.
What you should be concerned with is the doubling rate if your PSA starts to rise, how quickly does it rise.
At .2 they definitely want to do salvage radiation, But you’ve already had radiation and they can’t do it again normally. They could zap specific metastasis.
You may be jumping the gun here. Get regular PSA tests have it done monthly if you’re really panicked.
After surgery (3.5 years later PSA rose) and radiation, my PSA stayed undetectable for 2 1/2 years without any ADT. I then went on ADT, and when my PSA started rising again, I started on an ARSI Zytiga. Doing this is pretty standard and can keep your PSA down if it has started to rise.
I was on Zytiga for 2 1/2 years and switched over to Nubeqa and it has kept me undetectable for the last 22. months.
What I’m getting at is that there are plenty of treatments for you to consider along with your doctor. I wish you luck in having your PSA stay close to undetectable for a long time. < .1 is considered undetectable.
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4 ReactionsUPDATE:
I'm the original poster/starter of this discussion.
I had labs today-- the first time (2 months after) discontinuing 2 1/2 years of ADT (Orgovyx) following prostatectomy and radiation.
My PSA is still undetectable at < 0.01 as it has been for over 2 years now. My MO says taking PSA every 3 months in sufficient. I didn't want to come off ADT but he's convinced me that longer term ADT is not good and if my PSA starts to rise, we'll attack it then.
No PET is planned unless PSA starts to rise. I do have a lung CT scan coming up in a few months-- keeping a eye on a small (< 6mm) lung nodule that appears staple for 1 1/2 years. MO says not likely metastasis because soft tissue metastasis usually occurs only after bone.
I live in a small town with a small town but well-respected hospital/medical community. I get scared sometimes but I feel I'm in good hands for now. My MO today told me to stop worrying about things I can't control.
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6 ReactionsI've come to terms with being a aPC Survivor with "PSA Issues." I am 4.9 years along on this journey, 3+ years on ADT, my PSA's never stabilized. It's on a constant slow journey up or down. Thank goodness my oncologist understands my PSA constantly moves. We do PSA Labs every month. It tends to rise up for a year+ 2-4 points per month. When it Gets above 20 we do spot radiation, sometimes switch meds typical that starts/triggers a slow downward trend. When the trend stop, we don't panic, we just watch, wait, while it starts its clime. I'd have to say PSA journey is physiologically/emotionally hard to deal with. My oncologist is quick to point we are doing the best that we can, try not panic, which is hard. Learning to deal with constantly moving PSA is challenging, but I am doing remarkably well, maybe best version of self.
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4 ReactionsThat's awesome news man! Listen to your doc, they know. Even if your PSA starts rising again, they have plans. Best of luck, brother!
Doug