uPSA today 0.13 : (((
So, no doubt now that BCR is there. I mean, we had no doubt at 0.05 but as always we were told that we are possibly over reacting _ I am so sick and tiered of that nonsense already !!! 😤😡
We immediately wrote to RO and to surgeon too and demanded the start of preparations for treatment NOW.
We asked for Orgovyx prescription and for PSMA ASAP. Now - wish us luck of achieving that goal *sigh .
Regardless of me being sure that BCR is brewing, seeing that PSA number today felt like sledge hammer hit me between my eyes (I wish it did !!!)
Hugssss to alllll - stay well 💗
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@klein505 Exactly!! Most wouldn’t even have had the uPSA, so yes, you are WAAAAY in front of this thing.
It totally sucks all around and you will never stop being anxious and full of worry; that - more than anything - is the worst part of this disease.
But you got thru the surgery and you’ll get thru this. Once the Orgovyx kicks in you will breathe a sigh of relief and KNOW that something good is happening.
Phil😘
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6 ReactionsAh man. That sucks.
There's a line of thinking where you don't start the ADT until after the PSMA PET scan. That way you have a better idea of where it's located. But have it ready and start the minute you're done with the scan.
That's assuming you can get the PET scan quickly!
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5 Reactions@smoore4 - Yep, my GUO actually gave me ADT samples to take home with strict instructions not to take any until PET was completed. ADT like Orgovyx works extremely quickly and will diminish the results.
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5 ReactionsSorry to hear this Surf. But this is where you and your aggressive behavior on this is going to help in a very big way. Stay ahead of it and kick its butt!! Proud of you and good luck to hubby!!!!
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5 ReactionsAwww...really sorry to hear this. Wishing you speedy treatment of your choice and a total recovery.
Sending Hugs and prayers your way.
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5 Reactions@surftohealth88
Dude, don't panic.
A one-time increase, I don't think, is a reason to get upset. Get tested again in a month, and if nothing changes, then it's time to get ready.
Let me clarify a few questions for you:
1. Gleason score
2. Did you have your prostate removed?
3. What kind of physical activity and exercise do you have?
4. Sex (no, often, or sometimes)
5. How long has your PSA been low?
6. What's been happening with your testosterone levels over the past year, and what's your current level?
7. What's your diet like? Do you eat everything or is it plant-based?
8. Age
9. Briefly describe your treatment before the PSA increase.
10. Did you have your PSA tests done at the same lab or different ones?
And finally, do you know what margin of error is? It's when the measurement result isn't very accurate, in short.
0.13 - 0.05 = 0.08, yes. A doubling of the PSA can be considered 0.05 + 0.05 = 0.1, but pay attention. The point is that 0.13 needs to be confirmed with at least 1-2 more measurements for the following reasons:
1. They could have used a different device for the measurement.
2. The measurement result could have been affected by an elevated PSA condition unrelated to cancer.
3. I've heard that the final result also depends on the specialist.
I wouldn't worry if I were you. Take two more PSA measurements on an empty stomach early in the morning (don't eat anything, don't have sex for two weeks), so nothing affects the accuracy of the measurement.
And one more thing: find some licorice root and try drinking some.
I'm waiting for your answers. Just a quick pat on the back, bro, don't panic.
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2 ReactionsWell, a valid decision in light of PSA...
As to the PSMA, may be early but never say never, if it does show activity then you have a piece of the puzzle.
If it doesn't just brings another decision - radiation, yes, where, prostate bed, include PLNs...?
How long do you envision being on systemic therapy?
Have you discussed deintensification criteria with your medical team?
Have you discussed the adiation of an ARI?
Inquiring minds want know...
Kevin
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3 ReactionsThank you all who stopped by to give us additional well wishes, advice and encouragement 😌💗 !
Thanks for the info about ADT and PSAM scan - I was wondering about that too. We reached to RO and he told us to just have it ready and to take it the same day after scan is done.
Now we are waiting to PSMA to be scheduled *sigh, nothing goes fast at this UC. I knew about that from previous experience and that is why I insisted on having discussions when uPSA was just 0.05, but regardless there is always a wait and this is maddening. We are always proactive and do everything according "to the book" but than we always get care in the last moment or even late 😥.
We very clearly stated in our correspondence that we insist on treatment starting no later than PSA reaching 0.2 and if PSMA can not be scheduled in a week or 2 than we will ask them to consider this "adjuvant" or whatever and start treatment regardless ! This is insane, honestly.
@kujhawk1978 , thank you for the input , yes, it is only about 30% chance to see anything but as studies state clearly salvage should start before 0.2 regardless of negative PSMA.
SRT will treat the whole area inclooding nodes + ADT for 6 mos. We asked about ARI or ARSI etc., all 3 members of the team (MO, RO, surgeon) sad no *sigh. There is a new wave of thought , it seems, that less is better and that treatment should be intensified when and if needed. I asked also about Nubeqa since it can do the least of harm but was told that it is used only in trials for now in the sRT scenario (one study is to be finished this summer). All in all - IF there is nothing seen on PSMA - the treatment is Orgovyx 6 mos and whole pelvic floor plus nodes , 66 gys. If PSMA finds something in nodes, than treatment will intensify.
@denis76 - thanks so much for your inquiry and for encouraging words < 3.
Yes, I should really finally update my profile , or better said , my husband's profile - I am here by proxy representing my hubby. He had RP in August last year and his pathology is awful, 4+5, cribriform, IDC, one iffy margin, one unifocal EPE but inside the margin , etc. Decipher 1. (yes, 1) His post op PSA was less than 0.014 , and for the past 4 months steadily going up and in doubling numbers (we test his uPSA every month). So, there is no question that he is having BCR , unfortunately ... : ((( I just pray to god that recurrence is in the pelvic area.
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4 Reactions@surftohealth88
I see , thanks
Testosterone level?
@denis76
Testosterone is 447