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SHEEESSHHHH - oh well ... : (

Prostate Cancer | Last Active: Apr 28 9:20pm | Replies (65)

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Profile picture for mlabus3 @mlabus3

I assume your partner is high risk. Suggest you may want to get another uPSA. One rise is not a good sign, but most will tell you that you need 2-3 rising PSAs. I have had a .069, .039, .038, .056 and a .051, testing every 6 weeks or so. So you never know. For me, im going to get one more and see what happens.

i have a couple more meets with my RO and MO to determine a plan, and I am getting a second opinion from MSK. But I think my plan will end up a lot like yours. I have been planning on orgovyx/apalutimide, but I hear that Nubeqa has is slightly less effective but with less side effects. will do lymph nodes and pelvic floor radiation. i have some questions on how many sessions - seems like 20-25 is the new normal. A couple more decisions and a couple tweaks, but that is what i anticipate my plan will be.

Im happy to compare notes if you would like. All my meetings are in the next 2.5 weeks. Like your partner, i will suck it up for a few months and then go back to cancer-free living. My doc says, and I agree, that I will die of something other than prostate cancer. Good luck!

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Replies to "I assume your partner is high risk. Suggest you may want to get another uPSA. One..."

@mlabus3

Thanks so much for stopping by @mlabus3 🙂
Yes ! It would be wonderful if we can stay in touch here and compare plans and results and possible SA .

We had our last consultations 3 days ago with a RO and to be honest, of all 3 specialists he gave us the most information, offered the most support and answered to all of the questions without any rush AND he himself offered ordering PSMA test beforehand so that we can have it reserved in case we need it in a month or 2. I asked surgeon if that could be possible but he said no need for that , he will order one when my husband hits PSA 0.2 and I asked teasingly :"Oh, and than he will have PSMA done the same day" ? He: "Emmm, I mean, huh, maybe not the same day, but I could call and see ..." *blah blah
But, never mind - never mind that he is responsible for "iffy margin" left
behind *sigh ...

RO will order PSMA at 0.1 so that appointment is ready once my husband hits 0.2 and than he will start Orgovyx the same day of having PSMA because even if the scan does not show anything, my husband will proceed with salvage RT.

I forgot exact number of RT sessions suggested but the amount of Gys will be 66. There is a span from 64 to 70 that can be used, he prefers 66 instead of 70 due to less chance of SA. The other excellent RO in that hospital uses 70 Gys though. I guess it is all like everything else with PC - a balancing act *sigh. One wants to kill the cancer but not harm the patient in that process.

My husband will have gold markers inserted (fiduciary markers), and no spacer. I think that RO said that VMAT machine will be used. I will have to go and check my notes.

So the plan is to wait for the next test mid May and see what PSA is doing. In our case however it is going steadily up unlike yours and you are in much better position according to some papers. In your case it might very well be that some benign tissue was left or even if it is a cancer it is obviously some indolent tiny tumor that will be eradicated with an ease 👍🍀 ! For some people PSA levels off at around 0.5 and stays there indefinitely and I am wishing you that scenario with all my heart 💗

PS: None of the 3 doctors ( MO, surgeon, RO) suggested additional ARPI even though I asked them about it. I asked about Nubeqa since it has the least of SA and unfortunately it is not still approved for this use - it is still in trials.

Wishing you all the best 🍀 and please stop by again with an update 🙂 !