Post RP and SRT journey - oh joy

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  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #122
    Georges Calvez said:

    Cheer up

    Hi Cushions,

    You just have to try and get over it.
    Your numbers are good, you have a very good chance of putting prostate cancer behind you.
    Spring is here in northern France and I saw a young lady with a shapely bottom in painted on jeans today and I was in instant randy mode despite twelve months of degarelix.
    Off to tickle up the old girl!

    Best wishes,

    Georges

    Share

    Send photos if available.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #123
    hewhositsoncushions said:

    Cheers

    Cheers

    I am going through an introspective phase at the moment as the suprise at a good number has worn off and I am processing worst case scenarios as is my rather annoying way.

    I definitely need to live in the moment!

    H

    Phase

    '....I'm going through an introspective phase....'

    It is not a phase; it is the perpetual hewho.  Be OK with who you are. We all love ya. You do the same.

    max

  • Georges Calvez
    Georges Calvez Member Posts: 547 Member
    #124
    Testing method

    Hi Cushions,

    What is the testing method and the limit of detection?
    My test results used to be less than < 0.03 ng/L Cobas Roche, they have now moved to < 0.05 ng/L Architect Abbott because they have changed the machine and the limits of detection.
    The results are still effectively zero as if I have any PSA it is below the limit of detection.
    You have to be careful with PSA test results as even doctors manage to extract nonsense from them.

    Best wishes,

    Georges

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 411 Member
    #125
    Hi Georges

    Hi Georges

    We are never told the mechanism and I never ask. I know it is the same mechanism each time which is the main thing.

    It is not supersensitive I know that, i.e. it goes 0.00 not 0.000.

    Supersensitive appears to haved a bad rep now due to the error margin and variation.

    My post RP results were 0.05 consecutively (which they considered a "pass" until it rose)

    I have been told that anything less than 0.1 is a "pass".

    I will bank that :)

     

  • Georges Calvez
    Georges Calvez Member Posts: 547 Member
    #126
    Pass

    Hi Cushions,

    I think they are using a test that is accurate down to < 0.05 mg/L, that is their 'zero'.
    I am not aware of a test that does give a zero value, maybe it is possible to adjust the limit of detection so that is a zero on the machine?
    The whole field of PSA testing is fraught with difficulty.
    I am friendly with one of the biologists down the laboratory that does my tests and I used to work in the field so I can have a chat with him if I feel like it!
    Hopefully you are in remission and will stay there now.

    Best wishes,

    Georges

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    edited July 2019 #127
    Assays and equipment tolerance

    Such tiny difference could be equipment noise. The next test will provide you a more realistic understanding of the situation. Remember that recurrence after SRT is considered only after three consecutive increases in tests done at least 4 weeks apart. Values need to be significant, not tiny as yours above. 

    I recall guys 10 years ago going bananas for tests done in ultrasensitive assays (0.xxx) of low increases  and restarting treatment even with PSAs less than 0.1

    Earlier attacks after failed RP and SRT has no significant survival periods. The majority use thresholds of PSA=5.0 to start a therapy.

    Surely I am not referring to your case but just to inform how you should reasoning when using the PSA to evaluate your stance. 0.07 has little significance in a patient after salvage therapy. Common successes are those where the PSA fluctuate and maintains a sort of plateau in long periods.

    Can I suggest we take this timing for a Guinness.

    VG

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 411 Member
    #128
    Vasco

    Vasco

    I wonder if you misread this history as you make it sound a little negative.

    Last HT - Aug 18 - RT Start Aug 18 - RT end Oct 18 - PSA test 1 Feb 19 0.07 / T test Feb 19 14 - PSA test 2 July 19 0.05

    My T is higher than it has even been, both tests in the "pass and low" range and decreasing.

    As you say, there is an error margin but I am a damn sight happier with a drop at this stage than an increase!

    I will bank it and take the Guiness as you suggest :)

  • Georges Calvez
    Georges Calvez Member Posts: 547 Member
    #129
    Simple

    Hi Cushions,

    I knew what you were talking about, you have a rising testosterone level and a falling PSA, I suspect that it is now below the level of sensitivity of the assay.
    So there you are, take a Guinness.
    It was 29 C here this afternoon, still bloody hot; so the wife is on the rosé and I am on the 1664!

    Best wishes,

    Georges

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #130
    Sorry for misreading "The Last" as The latest

    Yes Cushions, I am sorry.

    I misread your post. I didn't read your answer and thought the result being the other way. Well, the goody is that we enjoyed the beer. Shall we go for another round?

    Congratulations.

    VG

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 411 Member
    #131
    Well I never managed the

    Well I never managed the celebration earlier in the week so I had a double celebration last night and feel it this morning :)

    Vive la Vie!

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 411 Member
    #132
    0.9 Up from 0.5  months ago.

    0.9 Up from 0.5  months ago.

    Damn. I was looking forward to retirement. Probably won't happen.

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 411 Member
    #133
    I can't remember my own name.

    I can't remember my own name. I rang back to confirm and it was 0.05 to 0.09. She did say there was a chance assay errors were in ay so the onco directive is three month testing and action "when or if" it reaches 1.0.

  • Georges Calvez
    Georges Calvez Member Posts: 547 Member
    #134
    Steady in the ranks there

    Hi Hew,

    I would not get too stressed by that, PSA testing at that level is full of errors, it is still less than O.1.
    Can you ask for a retest or pay for one yourself?
    You still have every chance of making retirement and beyond even if it does come back.
    Prostate cancer is seldom a killer and when it does it takes a long time in the vast majority of cases.

    Best wishes,

    Georges

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 411 Member
    #135
    Georges Calvez said:

    Steady in the ranks there

    Hi Hew,

    I would not get too stressed by that, PSA testing at that level is full of errors, it is still less than O.1.
    Can you ask for a retest or pay for one yourself?
    You still have every chance of making retirement and beyond even if it does come back.
    Prostate cancer is seldom a killer and when it does it takes a long time in the vast majority of cases.

    Best wishes,

    Georges

    Hi Georges

    Hi Georges

    I think a retest would be too stressful ?

    I will stick with the advice and wait three months. As you say room for error. Just gotta stay positive. Hope you are ok!

  • Georges Calvez
    Georges Calvez Member Posts: 547 Member
    #136
    Fine

    Hi there,

    I am fine.
    It is pouring it down here like rain is going out of fashion.
    I am now five weeks from my last Firmagon injection so nothing much has changed yet.
    Next test for PSA towards late middle December, it should be less than the limit of detection again.

    Best wishes,

    Georges

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 411 Member
    #137
    Anyone know if psa bounce is

    Anyone know if psa bounce is a thing for srt or is it just primary rt?

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #138
    hewhositsoncushions said:

    Anyone know if psa bounce is

    Anyone know if psa bounce is a thing for srt or is it just primary rt?

    Bounce PSA is for those with a living Gland in place

    For prime RT and SRT in those with the gland in place.

    I wonder the reason of your question. PSA= 0.09 is low and not an alarming threshold in SRT patients of failed RP. Consider values above 1.0 Ng/ml as significative.

    VG 

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 411 Member
    #139
    VascodaGama said:

    Bounce PSA is for those with a living Gland in place

    For prime RT and SRT in those with the gland in place.

    I wonder the reason of your question. PSA= 0.09 is low and not an alarming threshold in SRT patients of failed RP. Consider values above 1.0 Ng/ml as significative.

    VG 

    Thanks Vasco

    Thanks Vasco

    I'm under incredible stress at the moment (had to quit a toxic job with none to go to) and I'm well in catastrophising mode.

    It was the fact that it went 0.07, 0.05 and then 0.09 nearing detectable that got me. So I've seen people in this boat on this forum and others in a similar situation and they recur. I guess what I forget is we only see the ones who do so on forums and the many that don't just get on with their lives.

    Thanks for giving me an objective view.

    H

     

  • Georges Calvez
    Georges Calvez Member Posts: 547 Member
    #140
    Anxiety

    Hi Hew,

    Anxiety is the most common symptom of a diagnosis or treatment for prostate cancer and in most cases it is not justified.
    Of the men who are treated for prostate cancer the vast majority will die of other causes.
    If you think of us as penguins standing on an ice floe waiting to jump into the water where a leopard seal may be lurking to gobble us up, then you are well to the back of the crowd.
    Even people like me who are high risk have a 98% chance of reaching five years and an excellent chance of making ten.
    Off hand I cannot think of a cancer that is less likely to kill you.
    Eight weeks to Christmas, time to start worrying about that!

    Best wishes,

    Georges

  • Josephg
    Josephg Member Posts: 455 Member
    #141
    Stay the Course

    Hi Hew,

    I agree with Georges that to the extent that you can, try to focus on other aspects of your life, versus continued churning over your PSA scores.  I know, much easier said, than done.

    Your PSA munbers are very low now, with small changes currently taking place, not even in a consistent direction.

    If you let PCa consume your entire consciousness, then you will miss many both current and future opportunities available to you in life.  Further, if you are consumed, then it is likely that others around you will also be consumed, thus reducing everybody's quality of life.

    Again, I know, easier said than done.  However, I can personally tell you from my own experiences that focusing on other aspects of daily life and relationships with friends and family will dramatically improve your overall outlook on life, as well as reduce your current churning about your PCa.

    Joe

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