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SHEEESSHHHH - oh well ... : (

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

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@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 🙂 !

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Replies to "@mlabus3 Thanks so much for stopping by @mlabus3 🙂 Yes ! It would be wonderful if..."

@surftohealth88 Can I ask why the need for gold markers? SRT usually doesn’t use them since there is no prostate gland to track (like with Cyberknife, etc), just the bed, which is a generalized area, easily targeted by the pre-treatment cone beam XRay done at each visit before the radiation begins.
Just asking since most of the people I know did not have them inserted for SRT…Thanks!
Phil

@surftohealth88
Very frustrating for you. I wonder that they won't consider darolutamide, even if its not approved for BCR recurrence. Doctors commonly prescribe drugs "off-label", if they want to .

Maybe the docs are employed by the hospital, and the hospital won't let them prescribe 'off label' (could be a liability issue there) or maybe they know insurance companies won't cover non-approved drugs, so they don't prescribe them. Guessing the ARPI's aren't generic yet ($$$)

Crossing my fingers that your husband's PSA plateaus, or better yet, goes back down.