Looking for anyone or anyone that knows someone with a post RP low but rising uPSA level?

My psi went from .02 to .08 and back to .05 in a year and a half. I would not worry at all about your numbers. They are almost within the margins of error. Have you read Dr Myers: When rising PSA is not PCa.

I have a pesky G6 and have experienced a long 13 year journey of knocking PSA down and seeing it slowly come back... Seems stabilized at .20-.30 now... Go figure...

pasayten

oldbeek, thx

watched the video. the complaint was about the standard PSA test being used at it's error prone lower limits.

the uPSA test is theoretically better as my readings are above the lower limit of 0.005

there is the issue of how micro cancers produce PSA as sometimes they start fast and then slow later

doubling time is everything down the road

I would like to get data as far as my odds of staying parked at these low levels for years to come.

are my odds 90% or 50% I wonder?

I am a gleason 3+4. if they left something behind was it 3 or 4? you can live with 3 for quite awhile

jronne said...

I would like to get data as far as my odds of staying parked at these low levels for years to come.
are my odds 90% or 50% I wonder?
I am a gleason 3+4. if they left something behind was it 3 or 4? you can live with 3 for quite awhile

Jronne, regarding your first question, the odds of staying parked at those low levels can be determined using the MSKCC Nomograms, for surgery. I was going to put your data in myself and give you those odds but you do not list your PSA prior to surgery. Just go here... https:// www.mskcc.org/nomograms/prostate/post_op ...But remember that these are statistics and they don’t apply To any one individual, only large groups. never really know. However your very low decipher score should give you some confidence.

Regarding what was left behind and you can never know that, you can only know what was taken out. In my case, I wanted to know what the Gleason score was with the positive margin (my surgeon did intra-operative frozen section), So I asked with the pathologist go back and look further because it wasn’t on the pathology report. He did so and I got the information I wanted. So one thing you might want to do if you want to be super vigilant, is go back and ask what percentage of the G3 +4 was grade 4 cells, if you don’t have that info. I had to insist, but they finally did it.

With all that said I don’t think you or anyone else can get the level of certainty that you are looking for.
I say that only because I think I know what’s going on in your head I wasn’t very much the same situation as you were except that my PSA had already gone up to .08 but I made the decision to act. I really think with a PSA of .01 you should just chill a little bit and see where this goes if you get another two risers and maybe meet with an RO just so you have a plan in place in case it continues to rise.

I’m still not sure that I made the right decision, especially reading some of the responses to your thread. But here’s the thing… The fact is I will just never know. There is no certainty in this disease

The waiting is the hardest part. I am 11 months post RALP. My PSA is creeping up. Now 0.08. Seeing my RO next week to get his opinion. Due to my scores (see below) I am on a very short leash. They most likely will start radiation and hormone therapy if/when I get to 0.1.

kwoo64, thx

looks like uPSA typos

you got your first non zero uPSA post RP at July 2018 0.04 OR July 2017 0.07?

The doubling time is key as doubling times less than a year can be cancer

your dates and values look off or out of order

July 2018 0.04,
Jan 2019 0.05
April 2019 0.06
July 2017 0.07
Jan 2019 0.09

how can Jan 2019 0.05 and Jan 2019 0.09 both happen?

also July 2017 0.07 is higher than April 2019 0.06?

anyways would like as much detail as you can give

avoid B7 / biotin supplements 72 hours before the uPSA test btw

my friend got SRT at Stanford this summer at uPSA of 0.055 after 2 3 month rises to qualify as new school BCR

anyways much depends on many factors, I am researching these now as the path for everyone could be different

I did the genomic health decipher test to quantify my metastatic PC risk. score 0.22, a great cross-check

my RP margins were less than 0.1 mm practically positive, how close were yours ?

Jeff

kwoo64, thx
Close margins are riskier but typically functionally negative as cutting tissue destroys cells on both sides.
7 years is a long time, I have measurable uPSA at 4 years (0.011)
Looks like your doubling time is 15 months?
Not bad, not good.
Two years doubling time is less aggressive.
Having an extra decimal place might help dial it in.
I am trying to dial in my doubling time.
Pay attention to stopping supplements days before your uPSA test.

jronne said...
oldbeek, thanks
curious to what your entire PSA history is from post RP
also your gleason score and pre RP PSA
in particular the timing of the ups and downs
I use the uPSA test so I have 3 decimal places
can you add a link for the Dr. Myers book ?

City of Hope where I had my RP uses the PSA test where <.1 is the bottom. They call that good enough. The 3-18 number of .05 was when I changed labs to get a 2 diget result.

Jronne.. I wasn't aware of stopping suppliments! I have taking a multivitamin religiously for decades. Good to know!

'if they build it you will come'....ahh...what to do when they build an infinity test...which they will...angst eternally?....rhetorically?....perspectively?...the question is not when do we die...and how...it is when do we live and why... oh.... and those are not rhetorical...but individual...whot? I know...I know...stop and chats fill the gap...when the gap is not to be filled but linked...<<<miss it not


When the messenger cries...see the sign...bottom line...reverse the verse for best replies

Working on getting a good MO to be my QB.

I have a referral in now requesting an appointment with Dr Sweeny at Dana Farber Cancer Inst., in Boston. I want him to take over my case. Waiting on a reponse.