RRP followed by PSA Rise

1246

Comments

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 409 Member
    edited October 2017 #62
    Hi guys

    Hi guys

    Thanks for the kind words. They gave me a lift!

    One thing I noticed since the provisional all clear is that I have taken my foot off the gas a little and am struggling to get it back on. Before the op I was 100% healthy eating, no booze and fitness mad. Now I'm 95% healthy eating, drinking a little bit more than a little (:)) and fitness is a nightmare now I am working (including travel).

    I think this is in part a reaction to the good news and not unexpected but I want to kick myself back into the race.

    How do you old salts keep a tight ship on health and well being and not getting complacent?

    C

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    .

    Motivation has to be self actualized. It's up to you. 

    You can create an environment that is healthy...for example no bad food at home....the same for booze.

    As far as exercise, I simply do it every morning; it's a routine for me.

    .....................

    Make believe that your life depends on a heart healthy life style....................It really does.

     

    best

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 409 Member
    edited December 2017 #64
    Hi guys

    Hi guys

    Life got in the way of worrying about things but I've reached the near six month mark now and slowly hacking away at the mental obstacles and rarely think about the PCa.

    The current big mental block is really wierd. By blocking out the cancer it has actually made me weaker. Sounds daft but while it was top of the list it gave me the drive to ignore and steam through all the petty b******t life throws you at work and out and about by putting everything into perspective.

    I want that drive back without the fear. I need to do some deep thinking over this.

    Has any one else experienced the same feeling?

    C

  • contento
    contento Member Posts: 75
    cushions, I also block out

    cushions, I also block out the Pca but I think it's made me stronger in helping me deal with life. My perspective  is a lot different these days. Situations that might have seemed insurmountable  in the past now seem relatively insignificant. I just don't worry about petty bull s...it  anymore. I think the threatening  concern of the Pca gave me , what I consider, strength. I have to say that about 2 weeks or so prior to my 6 month psa check I'm somewhat of a mess. I just had mine a few weeks ago and I was good.
    Hope yours turns out good as well. --contento 

     

     

  • paulc59
    paulc59 Member Posts: 10
    Lucky64 said:

    Glad you're feeling well!

    Hi Cushions,

    I'm leaning towards surgery, I'm a Gleason 4+3, what is your age and #? Was it robotic? My surgeon says I can stay two nights in the hospital, did you need two? What excecise prep did you do to help with surgery? Why will it take 6 weeks for the biopsy?

    All the best,

    Nick

    robots and sleepy gas

    exactly 3 weeks recovered today--gleason 4+3 locally contained but 6 of 7 samples positive--after a month of second opinions decided on davinci--no thank you to hormone therapy and 9 weeks of radiation.  Spent one night in hospital--had no issue with foley at all,actually liked not having to get up 3 times a night to pee. Belly pain lasted 2 and a half weeks,but right now i feel great. Ive noticed its a little painful during bowel movement but i believe its hemoroids,i was constipted for about 3 days after surgery and was worried,but i stuck with stool softeners and coffee and alot of walking around house and it worked. Absolutely nothing from down below despite saving half my nerves-not worried yet----time will tell. my penis defeintely looks different--i lost an inch--not happy about it. Leaking is an issue!! my bladder doesnt seem to be totally emptying, thus afterwards if ii sit down or tilt forward i leak-again ill give it some time--psa test still 3 weeks away-if it reads zero-iwould have to say it was worth it

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 409 Member
    Yay! Finally found my update

    Yay! Finally found my update thread.

    All is well - diet and fitness on track but stressed about this week's PSA test. Have to keep hacking away. It is interesting how deep down the fear is and it is only when you look really closely you can see your brain whizzing away under the covers goimng ****! ****! Do others find their fears are buried or on the surface regarding PSA tests?

    C

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member

    Yay! Finally found my update

    Yay! Finally found my update thread.

    All is well - diet and fitness on track but stressed about this week's PSA test. Have to keep hacking away. It is interesting how deep down the fear is and it is only when you look really closely you can see your brain whizzing away under the covers goimng ****! ****! Do others find their fears are buried or on the surface regarding PSA tests?

    C

    .

    LIfe goes on for me, no stress unless I am waiting for the results of PSA, biopsy or any test related to prostate cancer. After nine years, the stress is less, but still existent. Others I speak with tell me the same.

  • Josephg
    Josephg Member Posts: 318 Member
    edited February 2018 #69
    Mood Before PSA Test

    I would become somewhat introverted and cranky for about a month before my recurring PSA tests.  It kind of grew like a slowly developing toothache, until I recognized what it was, and I made a conscious and concerted effort to subdue it, at least in the compny of other people.  I found that it was the worst, during the period of time that my PSA was still undetectible.  Strangely, once my PSA started to rise again, the amount of pre-PSA test anxiety and mood swings have reduced dramatically.

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 409 Member
    Well I was right to be

    Well I was right to be worried.

    Just had the call.

    0.16.

    I am having a repeat test to see if it is a false positive (given my history of a clean removal with no margins and a 3% tumour they are surprised).

    I feel like crying.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,752 Member
    Damit !

    Very sorry to hear of your PSA result, hewho.  You are correct: With your biopsy and later, with your pathology results, this possible (not yet confirmed) relapse is impossible to reason out.

    You studied much longer than most here, so you have the mantle of knowledge with you already.

    If confirmed, salvage radiation toward cure is still very much a way to eradicate the disease fully, even with this latest result.

    max

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 409 Member

    Damit !

    Very sorry to hear of your PSA result, hewho.  You are correct: With your biopsy and later, with your pathology results, this possible (not yet confirmed) relapse is impossible to reason out.

    You studied much longer than most here, so you have the mantle of knowledge with you already.

    If confirmed, salvage radiation toward cure is still very much a way to eradicate the disease fully, even with this latest result.

    max

    Knowledge is a double edged

    Knowledge is a double edged tool.

    It is annoying that it rose so soon.

    Problem is we can speculate till the cows come home but can only act on knowledge.

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 409 Member
    Also worrisome is the low

    Also worrisome is the low starting PSA and the mucinous element as a potential land mine. But again, facts rule.

  • contento
    contento Member Posts: 75
    Cushions

    Sorry to hear about the result. A recheck of course is necessary to confirm. It sounds like you were right on top of this given that the psa is not higher.  The same thing happened to me. I had a reoccurance after about 17 months. You'll probably do a bone and pelvic scan to rule out metastasis . If clear you'll be a candidate for salvage radiation. The expectation is that the cancer is still within the pelvic area preferably in the prostate bed. They might be able to see the cancer with a endorectal MRI but your psa is so low they might not be able to see it. No matter they'll still go ahead with the radiation and maybe HT.

    Cush, it's all doable. I've done it and my psa is still non- detectable after 2 1/2 years. And I was stage 3 with a gleason of 8 !  So far I haven't had any after effects do to the radiation , though long term who knows.

    I know it's crazy nerve racking and I feel for you  but you'll get through this. One step at a time.

    Good Luck ... Contento

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 409 Member
    edited March 2018 #75
    Hi Contento

    Hi Contento

    I have a list of prayers in ascending order:

    False positive

    Remains of prostate left behind

    Localised PCa

    A cure for cancer because I don't want to think about the alternative

    :)

    I know it is not the end of the world if it has come back but I have a habit of playing stupd numbers games in my head, shaving my life expectancy every time something else goes wrong. I call myself Mt Catastrophiser :) Silly I know.

    Anyway, just had a call and I am booked in for my consultant in three weeks (the joys of the NHS) and another blood test next week.

    His actual action limit is 0.2 so it will be interesting to see how this plays out once I get the next blood test.

    The other thing I found was that I am in the middle risk bracket for seriousness as those whose psa doubles in three months after surgery are worst set and those whose psa doubles over 18 months are better off.

    Cushions

  • contento
    contento Member Posts: 75
    Yes Cush

    Yes Cush I'm with you and hope for the best. My doc also used .2 ng/ml as the trigger for reoccurance. My psa doubling time was 6 months but I'm still going strong today.

    It's always one thing or another..  Hang in there Cush

  • VascodaGama
    VascodaGama Member Posts: 3,526 Member
    It could be a "false positive" but ...........!

    I would recommend you to wait for the next PSA to draw conclusions. In any case, before any decision you need to check other health issues that could interfere with an additional therapy. Radiation is linked to colitis and hormonal therapies are linked to bone health. NHS doctors will only check the matters of PCa if you do not inquire on the other issues. I wonder if you still trust the GP attending you. It has been totally unreliable in dealing your case.

    Best wiches and luck in the next meeting.

    VG

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 409 Member
    edited March 2018 #78

    It could be a "false positive" but ...........!

    I would recommend you to wait for the next PSA to draw conclusions. In any case, before any decision you need to check other health issues that could interfere with an additional therapy. Radiation is linked to colitis and hormonal therapies are linked to bone health. NHS doctors will only check the matters of PCa if you do not inquire on the other issues. I wonder if you still trust the GP attending you. It has been totally unreliable in dealing your case.

    Best wiches and luck in the next meeting.

    VG

    Vasco

    Vasco

    I hsve a blood draw on Monday to see what the numbers are on a second try and a consult on the 20th.

    I don't think I have any other health issues to worry about as I am fit for my age, no diabetes, only slightly overweight. I'll take what they throw at me treatment wise - I have a family I need to live for.

    As for the treatment so far, to be honest, the main issue was the transition from the GP to the hospital as there were drop offs that I had to pick up on. In terms of actual treatment, I have no complaints apart from it being very clinical (i.e. not mental health friendly).

    Where I am in the NHS pathway, the consultant steps back anyway and hands over the specialist nurses as I was on maintenance PSA tests whereby they test and call and only take action if there is a concern. In this case, they were on the ball so I cannot complain.

    My main concern oddly enough is to persuade them to start SRT early as I have read that hitting it hard whilst under 0.2 and with adjuvant therapy is far more effective than waiting until 0.2 and following sequential treatment.

    Just have to wait and see.

    C

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,752 Member

    Vasco

    Vasco

    I hsve a blood draw on Monday to see what the numbers are on a second try and a consult on the 20th.

    I don't think I have any other health issues to worry about as I am fit for my age, no diabetes, only slightly overweight. I'll take what they throw at me treatment wise - I have a family I need to live for.

    As for the treatment so far, to be honest, the main issue was the transition from the GP to the hospital as there were drop offs that I had to pick up on. In terms of actual treatment, I have no complaints apart from it being very clinical (i.e. not mental health friendly).

    Where I am in the NHS pathway, the consultant steps back anyway and hands over the specialist nurses as I was on maintenance PSA tests whereby they test and call and only take action if there is a concern. In this case, they were on the ball so I cannot complain.

    My main concern oddly enough is to persuade them to start SRT early as I have read that hitting it hard whilst under 0.2 and with adjuvant therapy is far more effective than waiting until 0.2 and following sequential treatment.

    Just have to wait and see.

    C

    Early

    He who,

    I have read similiar studies, that beginning RT sooner is better than later (intuitive enough) in effecting cure of moderate relapse.   An aside, my Urology Group (in the Southeastern US, at a teaching hospital) also uses .2 as the threshold in defining relapse post RP.

    HT of course is never curative, but is of assistance to the RT when added, and is not an uncommon combination. And HT has given many a man here an additional 15 years of life,

    max

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 409 Member

    Early

    He who,

    I have read similiar studies, that beginning RT sooner is better than later (intuitive enough) in effecting cure of moderate relapse.   An aside, my Urology Group (in the Southeastern US, at a teaching hospital) also uses .2 as the threshold in defining relapse post RP.

    HT of course is never curative, but is of assistance to the RT when added, and is not an uncommon combination. And HT has given many a man here an additional 15 years of life,

    max

    Max

    Max

    That is where I am coming from.

    Having got over the shock (well not fully) of realising I am going to die earlier than I first thought, I intend to go all out to beat this **** back for as long as possible.

    I saw my uncle die over Xmas of cancer of the everything and I do not intend to inflict that on my family, even if I have to suffer misery in the treatment process.

    **** cancer.

    C

  • VascodaGama
    VascodaGama Member Posts: 3,526 Member
    edited March 2018 #81
    Hitting it hard

    Yes, ADT improves the outcome of SRT and so it does the radiation administered earlier, however, this claim is only expected if the field of radiation contains the whole cancer. One needs to be sure that the targets were properly identified, which as we know is a difficult task with present available means.

    The doctors at NHS will spend little time reviewing in detail your past and present history. You need to collect this info and summarize it into the important subjects that can influence their judgments. At least copy of the biopsy report, the MRI, the pathological report on RP specimens and the PSA histology.
    Without details the doctors will follow the typical protocol in SRT with a predefined field of attack. They will radiate the bed of the prostate (the fossa) and localized lymph nodes (?).

    This kind of protocol is different from a treatment that includes surgery plus adjuvant radiation, which I think being your comment above. Typically the series of nodes involved is vast depending on the location of the cancer found in the biopsy. Inguinal, the iliac and pararectal at the pelvic area (anterior and posterior) may or may not be part of the protocol.

    My experience with the NHS procedures is that the urologist continues to be the prime doctor providing the forms (request sheets) for other specialties under his own responsibility. Those services can be requested at an inner department or at an outsider. The scope of attack is planned by the radiologist but this guy will not go further than what has been requested or established in the urologist’s form. In such regard we may help the urologist to avoid missing any probable area. One needs to investigate about those areas that could be the cause for later recurrences.
    The risk from a SRT done on guessing is if this does not cover the whole affected area which could become in fact a worse case in need of “rads over rads”.

    If recurrence becomes apparent in your case (not yet verified), you are confronting a similar occurrence as that of mine in 2000. I was 50 at RP, saw biochemical failure and six month later were declared with recurrence. Everything was confusing to me and I believed in the doctor blindly. He was my god and savior from a death that did not exist.

    Let us know the developments . We will try helping you.

    Be the force with you.

    Best wishes,

    VGama