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PSA 7.3 - referred to urologist

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User

Posted 22 Dec 2018 at 20:07

Thanks Bob - I get all you say. I am not certain I can ever get to a stage where it isn't ruining my life. Indeed, I will go further and say that if I did not have my wife and son then I would not wish to continue with life per se. Sounds dramatic, but this is where I am at. I'd love to snap out of it and be positive like people I know tell me to be, but I can't - it's alien to me to be positive when my life bubble as been burst.

I sort of began to feel "okay" about it all when I read the survival rates for localised PCa (5 years nearly 100%; 10 years 98%; 15 years 95%), but I don't think these percentages can possibly be factoring in the recurrence element and the potential for spread and metastasis. I just know that the level of stress will never subside in the knowledge that every 3 months or 6 months, whatever it bloody is, I have to find out if my PSA is still undetectable.

F it all.

User

Posted 22 Dec 2018 at 20:16

Just a quick P.S. I play golf with a guy who had it about 15 years ago, he is 83 years old and moves around the course quicker than I do 🏌🏻‍♂️🏌🏻‍♂️

User

Posted 22 Dec 2018 at 20:22

Cool. I apologise for being Mr Malcontent on almost every post - people have tired of me and I don't blame them. This forum though offers a certain solace because I am only interested in speaking to people who are going, or have gone, through this. Others do their utmost to empathise, but they can't - I wouldn't be able to.

Did you see Janet's post? PSA 30 and PIRAD 4 and still got the all clear; I should be so lucky....but I won't be.

User

Posted 22 Dec 2018 at 20:38

You are just like my wife the eternal pessimist!!!

I know where you are coming from though about hearing the experiences of those who have been though this or are going through it and trying to make decisions.

I do find most of the post biased to going with one treatment, but that just may be my view of it.

I hate to say this but I very nearly posted a couple of days ago to have a go at you to stop whinging and man up but I had to remember that I was very tired due to my HT and we are not all the same.

Whatever the outcome I’m believe the majority of the people on this site are not the type to tire of you and want to help you through this.

To be honest I find replying to your post help me, as talking about it is what gets me though it.

Bob

User

Posted 22 Dec 2018 at 20:53

I didn't think I could possibly be helping anyone on here! I would not blame you or anyone if they told me to "stop banging on and to man up". I am sure many have bitten their lips on more than one occasion reading my incessant brand of morbidity. Hearing my crap, when I am yet to be properly diagnosed requires people to be ultra-tolerant of me. I think I will ultimately go one of two ways - decide to say f..k it and just get on with it in the way you, Chris, John and Luther sort of tell me to or I will wither away.

I guess it takes all sorts and I am at the wrong end of the "man up" scale. I wish you all the best, Bob, I really do and I thank you for taking the time to reply to me. Okay, need to stop moving into my other mode - soppiness.

User

Posted 22 Dec 2018 at 21:44

How is your wife and son coping ?

User

Posted 22 Dec 2018 at 21:57

Wife has been a rock, despite me being a piece of grit. Son is holding up, although he'd never seen me cry before and I lost it when he came back from Uni last weekend. It is for them that I must pull myself together - this might not be fair on me, or anyone else who I utterly respect on this forum but it is not fair on the two people I love in this world to see me like I am. So kind of you to ask & bless you for doing so.

User

Posted 22 Dec 2018 at 22:01

Haig - we’ve a few things in common. Firstly, I'm 48, you’re 50. Both too young to have PCa. Life’s not fair sometimes. Secondly, I had my surgery at the Royal Berkshire. Thirdly, we are both in teaching. I’m a secondary head. Just remember, when it comes to treatment and recovery time, you come first, not the kids at school.

Ulsterman

User

Posted 22 Dec 2018 at 22:06

Maybe we should meet sometime? I agree with your words by the way.

User

Posted 23 Dec 2018 at 03:28

My PSA is undetectable in four tests six months after my surgery.

If and when I have detectable PSA that rises over several tests, over months or years, and breaches the 0.2 official level for biochemical occurrence, I will have a choline or G68 PET-PSMA scan to determine the exact location of any metastases, and then highly localised radiotherapy to destroy them, that’s if I elect to have any treament at all. One oncologist suggested hormone therapy for recurrence (= chemical castration) for up to two years, which I am not too enamoured with.

As for prognostication tools - the Memorial Sloane Kettering Nomogram is the one they all seem to use, you could always book a reading with Mystic Meg or Gypsy Rose Lee on Blackpool Pier. The fifteen-year recurrence rates are based on up to fifteen year-old data, and medical science, particularly in this field has moved on tremendously. Moreover, I don’t think they factor in the skill of any surgeon, and I happen to think I had one of the best in the country, as evidenced by my virtually pain-free surgery, rapid recovery and 100% continence.

So, no, I am not now anxiously awaiting the result of my next PSA test, whenever I get round to having it in the next couple of months. I have been chilled about the whole thing since the start a year ago, which may be difficult for some here to believe. My G score is 7, intermediate agressive, not 9 or 10 very agressive, and it’s my belief that any secondaries will be the same score, as offshoots of the original cancer.

One silly oncologist told me I am cured, and another, more of a realist told me, ’It won’t kill you’. So I guess they’ll have to put something else on my death certificate. I’m only bothered about the date written on it!

So enjoy your Christmas as much as you can, and look forward to the New Year, when all will be revealed - or not!

Cheers, John.

Edited by member 23 Dec 2018 at 05:24 | Reason: Not specified

User

Posted 23 Dec 2018 at 07:13

Thanks John.

User

Posted 23 Dec 2018 at 07:42

Oh, good morning by the way.

User

Posted 23 Dec 2018 at 12:36

Originally Posted by: Online Community Member

Thirdly, we are both in teaching. I’m a secondary head. Just remember, when it comes to treatment and recovery time, you come first, not the kids at school.

Ulsterman

We have teachers in our family a vice principal ( great teacher ) and a cousin who is an alcoholic for best reasons known to himself. He is a train wreck of a teacher who keeps losing jobs for obvious reasons. No one wants their children taught by a train wreck as it is their future at stake and it behoves you to take responsibility and do what's right for them whatever the reason if you are not at the top of your game.

I believe Ulsterman you have taken a sabbatical which is good news for you and probably your pupils. Maybe Haig should consider the same. At least you are in the fortunate position that you remain on full pay for some time. Of course your health comes first but you do need to think of the children and not just muddle through.

Best regards

Ann

User

Posted 23 Dec 2018 at 12:44

Ann,

I am not sure what I should do. The kids adore me and I'd hate to be a shadow of myself in front of them. I also live within the school, and just sitting around feeling somewhere between mildly suicidal and watching Homes Under the Hammer while life here goes on, is probably not the best approach for me. I think I need to go on teaching, even as I have the final diagnosis and then await my operation. Thereafter, I will take a little time out, probably going down to my mother's before I get back to have catheter removed and find out that first PSA result.

I don't think a sabbatical will ease my mind-state at this juncture.

User

Posted 23 Dec 2018 at 15:50

Does your Principal know of your situation. If so how are they supporting you?

Only you can know how much your worry is affecting your work or do you find it takes your mind off it.

As you have convinced yourself you have cancer before diagnosis maybe some CBT would help although it is probably too late to get that organised before you do know one way or the other. At least you do not have much longer to wait. I would say try to have a lovely Xmas in the meantime as others have but you do not seem able at the moment to think positively.

Best wishes

Ann

User

Posted 23 Dec 2018 at 16:16

Blimey H not even had you results yet but already half way through your treatment 😂😂

User

Posted 23 Dec 2018 at 16:21

Thanks Ann. No. I am seriously thinking about taking my own life - only my family stops me from doing this.

User

Posted 23 Dec 2018 at 16:23

I know Bob. If only I hadn't read the recurrence stuff, I think I might have been able to handle this.

User

Posted 23 Dec 2018 at 16:25

Bob. Can I ring you?

User

Posted 23 Dec 2018 at 16:37

Sorry Bob, that was wrong/unfair of me to ask you.

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