RRP followed by PSA Rise

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  • hewhositsoncushions
    hewhositsoncushions Member Posts: 409 Member
    edited July 2017 #22
    HI Rob

    HI Rob

    Yes, clear lymph nodes. The consultant was very brief as he was squeezing a call in between lists but the gist was large tumour, fully encapsulated.

    I struggled to take it in because I was taken by surprise but it is a damn nice surprise.

    I suspect if it had been bad news he would not have rung me and would have waited for the face to face.

    Just got to get my head in the game now and get the rest of my life sorted :)

    C

  • Grinder
    Grinder Member Posts: 487 Member
    edited July 2017 #23
    Bummer, Will

    Sorry you are still getting DREs. At least it is only once a year. I had a conga line of six different GPs and urologists taking turns to check out what I affectionately called "Godzilla". Even after thousands of RPs, the personnel at St. Vincent hospital said it was one of the largest they had ever seen. But now Godzilla is no longer around to terrorize the villagers. 

  • FinishingGrace
    FinishingGrace Member Posts: 82

    Big news

    Literally a moment after saving the above I had a call from my consultant.

    My first words (typical me) were "do I need to panic"?

    He said "No!"

    He said the gland had a lot of tumour (need to find out how much at the consult) but the margins were clear and so were the vesicles and glands. I see him in three weeks for the details but I am so glad he rang up to tell me know. I suspect I may have had a significant upgrade but we will see.

    I'm shaking right now!

    Thanks for all your support!

    C

    Amazing!

    So glad to hear your good news. :)

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 409 Member
    @Grinder - could have been

    @Grinder - could have been worse - could have been "Mothra" - those wings would sting coming out :):):)

  • Grinder
    Grinder Member Posts: 487 Member
    Monsters

    Now that you mention monster movie trivia... I often had a inflamed urethra as well, and you know who breathes fire.... Surprised

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 409 Member
    Where does the time go!?

    Where does the time go!?

    I had my continence review and got a pat on the head but a mild telling off for drinking too much coffee and not doing Kegels enough.

    Still waiting for the official review - I reckon I'll go from a 7 to an 8 but not losing (too much) sleep over it. Brain gets in the way occasionally but I just slug it out.

    I have one question - fatigue. Four / five weeks out and I am still mentally and physically low battery (afternoons are a wash out) even with reasonably good diet and sleep (nor walking enough though!). Anyone know if this is common?

    C

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 409 Member
    edited July 2017 #28

    Too Much Coffee?

    Cushions,

    I can understand catching "H" for not doing your Kegels,( I still do mine after almost 4 years)  But Too Much Coffee?  I never heard of such a thing.  In fact when I was in the hospital, they gave me coffee with my liquid supper the evening of the surgery. And the next day at  Breakfast & Lunch, I also had coffee. My Urologist/Surgeon also told me that a little Kentucky Bourbon (his favorite) or my beloved Vodka were good three or four times a week.  Just one drink.  As to Coffee, I drink all of that I want.  Doctor said that was fine and helps clean out kidneys and baldder.  I'm coming up on 4 years post diagnosis, and have hardly any control problems.  Just when I lift heavy things, laugh really hard or after I've been on my indoor trainer / spinner bike for like 40 minutes or more and then get off the seat.  Then I do my weights and get back on the bike for another 20 - 30 minutes in the morning.  Then after lunch time back on the bike for another 30 minutes.  I was a road cyclist and really miss being out there, but I was encouraged to keep up with the Spinner Bike.  But other than that, I really have very few leak problems.  Now, I admit this is almost 4 years post diagonis.  So, I'm sure things will settle in for you.  

    DO YOUR KEGELS  Laughing

     

    Take Care. Love, Peace and God Bless

    Will

    Hi Will

    Hi Will

    All I need to do is work on the Kegels and exercise to minimise leakage - that is just down to me.

    It is the tiredness that is the pain in the arse as it feels out of my control. I just can't seem to shake it at the moment. I have no idea if it is physical, in my head or both :(

    Steve

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 409 Member
    edited August 2017 #29
    Formal post op review

    Hi all

    Formal post op review today.

    No change to biopsy rating - G7 (4+3), T2, S2. Some cells were of some form of sub-type which he said he would include in the letter to my GP that I get a copy of.

    Regardless, bottom line is that as far as he is concerned, medically I am as "cured" as I can be at this stage - he quoted the standard 10 years / 85% figure for BCR.

    Near perfect continence and some erectile function, no lymphodaema and some mild nerve impediments which he said should fade, which puts me in the top 10% of patients for this stage post op (2 months - which has flown by!!)

    I have had my first post op PSA blood draw and am looking at the regular cycle of reviews with 0.2 as the gold standard for BCR.

    I can now start exercising as normal and I also have a ton of Viagra to deal with now :)

    I told him I was vegetarian / pescatarian / teetotal (ish) and following guidelines for what I can and cannot eat with respect to BCR but interestingly he shrugged and said "you are as good as cured - you can eat and drink what you want now". I intend to stick with the clean living apart from the odd drink now as it has given me a 2 stone weith loss.

    I'm a bit shamefaced about how much I flapped about all this but you guys have been very patient. I appreciate all the support and advice and kind words.

    I'll update you when I get the PSA results but otherwise will take a break. As I said to my Mum, this has ruled my life for over six months now and I want this to be a background thing not my whole life.

    All the best

    C

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

    Formal post op review

    Hi all

    Formal post op review today.

    No change to biopsy rating - G7 (4+3), T2, S2. Some cells were of some form of sub-type which he said he would include in the letter to my GP that I get a copy of.

    Regardless, bottom line is that as far as he is concerned, medically I am as "cured" as I can be at this stage - he quoted the standard 10 years / 85% figure for BCR.

    Near perfect continence and some erectile function, no lymphodaema and some mild nerve impediments which he said should fade, which puts me in the top 10% of patients for this stage post op (2 months - which has flown by!!)

    I have had my first post op PSA blood draw and am looking at the regular cycle of reviews with 0.2 as the gold standard for BCR.

    I can now start exercising as normal and I also have a ton of Viagra to deal with now :)

    I told him I was vegetarian / pescatarian / teetotal (ish) and following guidelines for what I can and cannot eat with respect to BCR but interestingly he shrugged and said "you are as good as cured - you can eat and drink what you want now". I intend to stick with the clean living apart from the odd drink now as it has given me a 2 stone weith loss.

    I'm a bit shamefaced about how much I flapped about all this but you guys have been very patient. I appreciate all the support and advice and kind words.

    I'll update you when I get the PSA results but otherwise will take a break. As I said to my Mum, this has ruled my life for over six months now and I want this to be a background thing not my whole life.

    All the best

    C

    Super !

    Super reports, cushions !

    Me, I would be headed to a prime rib and some fine English grog, but I read your post !

    Congrats,

    max

  • Old Salt
    Old Salt Member Posts: 955 Member
    edited August 2017 #31
    It's been interesting

    reading how the system 'works' (or not) on the other side. So far, so good; congratulations!

  • Grinder
    Grinder Member Posts: 487 Member
    !!!

    Shamefaced? No sir! Speaking for myself, I want to hear everything about everyone's experiences. The Good the Bad and the Ugly. I have learned more from this forum in six months than 10 years of urologist consultations. I

    Even if a procedure was routinely successful, I want to know everything about it. Even if a procedure was a disaster, I want to know everything about it. Every person's experience seems to have a peculiar component that is different, and the info provided today I expect may help another patient reading this a year or more from now.

    So flap away. But this is really great that your GP says you are "good as cured". 

    And someone may read your post in the future and breathe a sigh of relief to know that "good as cured" is possible. So thanks for flapping, and God bless!

  • FinishingGrace
    FinishingGrace Member Posts: 82
    Great news...

    Wishing you the best!

  • VascodaGama
    VascodaGama Member Posts: 3,529 Member
    Best wishes for complete Remission

    Cushions,

    I am glad for reading about your good recovery and your positiveness in confronting the situation. The news from your urologist provides peace of mind though I am septic about his standards for judging cure. I hope that he is correct and that you get a remission level in the PSA test this time. I think that the review you comment above regards the pathologist's report on the analysis of the gland and SV specimens. No positive margins and no invasion are the best news one can get. The additional finding on cells with a  sub-type are irrelevant because they are thought of being dissected away with the whole gland (contained case).

    In any case, just to clarify the many (and Old Salt's comment), the way to describe "cure" in Europe follows the same principles as those in USA. Probably Cushions' doctor uses this statement with a different degree of importance. I believe that he will provide his final opinion once a series of PSA results are out.
    The first test is highly significant. Any PSA level below 0.05 ng/ml, in RP guys, indicate treatment success. A continuous PSA level below 0.05 indicates remission. Increases after a nadir indicate biochemical failure and a PSA above 0.2 ng/ml declares recurrence. These are the standards used by urologists on this side of the Atlantic. Some doctors treat according to arrising symptoms and disregard earlier interventions. I think that Cushions' doctor expects him to have 10 years free from wories and treat if ever the bandit becomes troublesome .

     

    Best wishes,

    VG

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 409 Member
    Thanks for the kind words all

    Thanks for the kind words all. It is a relief I can tell you!

    I am going to have a tipple tonight to celebrate (in moderation of course :))

    As for the PSA test, he said the NHS limit is 0.2 as per the states. He did suggest (and as i thought) that sometimes the first test might be higher due to residual PSA in the body but it should fall. Wait and see....

    As far as I see it, it is better to use NED as the term - No Evidence of Disease until either I get it again or die of very old age in company of a near empty bottle of Jack, the remains of a couple of lines of coke, a dozen exhausted buxom tattooed ladies of the night and with "Who wants to life forever" playing in the background :):)

    He did also say that in very rate cases, people present with PSA at or above the limit with no actual cancer (I read something about some base of the bladder cells being involved but may be wrong). I see this as an edge case and nothing to worry about.

    From here on in, the conversations with be with a key worker and not the consultant unless things change so that will be a change of dynamics.

    A very relieved C

  • VascodaGama
    VascodaGama Member Posts: 3,529 Member
    Cushions, this is just you .... I like it

    Yes, I like the way you see the positiveness of the situation. Your choice for the end of life is Excellent. LoL ......

    In the end what makes us happy is the quality of life we get. For me quality is first; quantity comes in second. However, I become apprehended at each PSA. I see it as the threatening of my quality of living. My wife groups with the NED's style in treating according to symptoms. No doubts that they live better than me (and probably much longer), but for me to follow that principle is difficult if you know what is happening or know what will occur. After so many years with the unwanted guess I feel a sort of responsibility and wouldn't sleep well if not caring about the situation. This is like living a handicapped life.

    With the NED's approach, you do not need to care about any development in the future until the PSA reaches the threshold of 0.2 ng/ml, except if a symptom arises firstly. To look for the in-betweens you must rely on the NHS vigilant doctor. You just have to remember in getting the due periodical tests.

    I will join you for a bitter. I like the Ashbourne's Porter.

    Best,

    VG

     

     

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 409 Member
    Hey all.

    Hey all.

    Had to ring the hospital to prod them for the results of the post op PSA test from last week.

    It was 0.05 which makes me a very happy bunny.

    Looks like I will have to act as ringmaster for all the follow up because although they are very good and very nice people in isolation, the joinedupness and proactive communication is .. lacking.

    Now, where is that beer?

    C

  • contento
    contento Member Posts: 75
    Congrats Cushions

    Congrats !!! waiting for those  PSA results is just nerve racking..

    Let's hope this trend continues !!

  • VascodaGama
    VascodaGama Member Posts: 3,529 Member
    LoL

    Yes, where is that beer?

    I am happy for the news. This is the result we all want to hear. In three months get another one and celebrate. That is the begining of remission and continuous party.

    Enjoy,

     

  • Grinder
    Grinder Member Posts: 487 Member
    Yuck

    I wore boxer briefs with my pads. Tidey Whitey briefs are for mommy's little angels. Wife agrees, I look better in boxer briefs without clothes instead of briefs or boxers. There is no way in h*** she would let me visit the in-laws going commando. :D

    This is just my opinion, I am not a professional fashion designer. ;)

  • Will Doran
    Will Doran Member Posts: 207
    In-Laws?

    Grinder

    Oh, you have in-laws to please as well?  I've given up on trying to please the mother-in-law.  My whole situation is what's keeping my wife from having to run 100 miles, one way, everyother day just to please.  All the rest of the family lives on neighboring properties on the farms.  So, mother-in-law has all of them running as well.   Wife has given up as well.  We go every other Sunday.  And if there are home, college football games we don't go away from the place because of all the hung over drivers on the road.  We've taken the attitude that life is too short and we have limited time left together so we do what we want and live our lives as we want.  I tried boxers with the pads, and they got all twisted and that sticky part was rather uncomfortable when it was stuck to my body hair.  Boxers just didn't work.  I didn't think of the boxer briefs. That probably would have been better.  But I really don't care now, I'm back the way I like to be.  Commando.  They are the "family" members that drive me nuts.  They think I'm all over this cancer fight and all is done , since I had the surgery and treatments.  I can't get it through their thick heads that this is never over.  It's always hanging over your head and you have to keep fighting until your last day.

    So, off to the mother-in-law's----Comando.  It's my life and I'll live it as I wish.Cool

    Love, Peace and God Bless

    Will