Prostate problems

[dozy]

They must read this forum , say I’ve had no info about op , day letter receive letter ha ha , still can’t see why they don’t do psa , as I say just a blood test
Pre- op assessment 28th of this month so still time to fit in psa test

[lancpudn]

At last some good news from the oncology appointment I had this morning at Christies, The PSA blood result letter (6.3) I got off my doctor last week to take to this appointment was the wrong one, they gave me the old original PSA test result I had in 2022 in fact they cant find any of my blood test results on the computer system from decades of being a patient at that surgery To say they're incompetent is an under statement

The PSA result from May this year was 0.16 & not 6.3 FFS. Here's me thinking that all the radiotherapy sessions I had earlier in the year hadn't worked, She said it's excellent news & the prostate is as good as dead now.
She's arranged for me to have more regular flow tests at urology & regular PSA blood tests to keep an eye on things. She's also writing a stern letter to my GP about the sheer lack of post treatment care & communication I've had.

[Bone Shaker]

That’s excellent news.

[dally1]

This is one of the best threads on here and although there are only a few who contribute, I reckon there won't be many who don't read it with interest. Keep up the good work and the very best to all those who have been diagnosed.

[lancpudn]

Thank you Bone Shaker, dally1. It was a load off my mind to say the least. I asked her if this six monthly wait after the radiotherapy sessions for results is the norm & apparently it is. She's arranged for my PSA blood tests & urology flow tests to be every four months instead of six months from now on.

[Bone Shaker]

Keep us updated.

[dozy]

Received a few days ago ,psa 12 apparently , Sharon ( urology nurse ) not concerned as letter says my psa does fluctuate a fair bit , she believes it’s water infection , now got another psa nov & mri , not sure how that will work as also got pre - op ( different issue Oct ) , depends when op is , think they’ve took on my concerns it was getting longer & longer between psa / mri
I must admit I’m a lot better than 3 years ago though that could be were managing to control diabetis better , & no blood / pain , but still think a psa ( simple blood test ) every six months , or do a 2 nd a month after high psa

[lancpudn]

I had an appointment with the urology consultant at Bolton hospital yesterday & to be honest it was a bit of a let down! The first thing he asked for where the results of the PSA blood tests since finishing radiotherapy at Christies in February. I said I ain't got any & that's not through lack of trying on my part, I told him in the end I ended up asking Christies people to send me a pink slip so I can get PSA tests done, They only sent me one which I did at the end of May beginning of June. He asked for that result & I said god knows what's happened to it as I don't have it neither does my GP.


It isn't on the system either FFS I said it was a verbal message only. which was 0.16. He wasn't pleased with my GP as he said He should have arranged these series of PSA blood tests.

I've now got to fill in a input & output chart over the space of three days & three nights, He recommended getting a plastic measuring jug to record exactly what my fluid intake & output is, I'm not to drink anything after 18:00

I have two so I've marked it up accordingly to not get them mixed up.



I told him about the constant toilet visits night & day which are as bad as ever. It was recommended that I go the radiotherapy & hormone route instead of having it removed surgically, The consultant said if the prostate has been through radiotherapy it is now difficult to remove akin to removing chewing gum from a radiator, His analogy.
He sent me for a PSA blood test there & then & is sending me out pink slips for more PSA tests periodically then said I'll see you in 12 months time So it looks like I'm stuck with these conditions.

[dozy]

I had an appointment with the urology consultant at Bolton hospital yesterday & to be honest it was a bit of a let down! The first thing he asked for where the results of the PSA blood tests since finishing radiotherapy at Christies in February. I said I ain't got any & that's not through lack of trying on my part, I told him in the end I ended up asking Christies people to send me a pink slip so I can get PSA tests done, They only sent me one which I did at the end of May beginning of June. He asked for that result & I said god knows what's happened to it as I don't have it neither does my GP.


It isn't on the system either FFS I said it was a verbal message only. which was 0.16. He wasn't pleased with my GP as he said He should have arranged these series of PSA blood tests.

I've now got to fill in a input & output chart over the space of three days & three nights, He recommended getting a plastic measuring jug to record exactly what my fluid intake & output is, I'm not to drink anything after 18:00

I have two so I've marked it up accordingly to not get them mixed up.



I told him about the constant toilet visits night & day which are as bad as ever. It was recommended that I go the radiotherapy & hormone route instead of having it removed surgically, The consultant said if the prostate has been through radiotherapy it is now difficult to remove akin to removing chewing gum from a radiator, His analogy.
He sent me for a PSA blood test there & then & is sending me out pink slips for more PSA tests periodically then said I'll see you in 12 months time So it looks like I'm stuck with these conditions.

Can you not get medication to stop you peeing all the time , I’ve been offered it many times by urology nurses but don’t need it , so have said no
Obviously it’s different in my area but other than initial examination I’ve had nothing to do with doctors , all psa / mri etc are through hospital / urology dept / urology nurse
Sharon ( urology nurse ) is not as good as abbi at getting appointments sorted / on time but we do get there eventually , normally mrs gets involved
Best of luck , at least we’re still going , just over 3 yrs now from my diagnosis, fingers crossed for every one in our situation

[lancpudn]

Yes he did mention that there were pills to stop me going to the toilet frequently but I'm not able to empty my bladder fully. This bladder diary I've just completed will tell them more of the issue, My fluid intake doesn't match my output by quite a margin so I'll see what they say about it. I'm still taking Tamusolin pills which open the urethra to enable me to pee better.
It says on the bladder diary form to bring it with you to your next urology appointment which the consultant said would be in 12 months time !!!! I need to ring them as I don't want to post it.

[dozy]

Yes he did mention that there were pills to stop me going to the toilet frequently but I'm not able to empty my bladder fully. This bladder diary I've just completed will tell them more of the issue, My fluid intake doesn't match my output by quite a margin so I'll see what they say about it. I'm still taking Tamusolin pills which open the urethra to enable me to pee better.
It says on the bladder diary form to bring it with you to your next urology appointment which the consultant said would be in 12 months time !!!! I need to ring them as I don't want to post it.

12 months sounds along time , I’d be asking for 6 months , I’d be on phone to Sharon if I was suffering like you , abbi said just ring if you’ve a issue , I can understand with me extending the length of times between psa / mri tests , but not you
Poor

[lancpudn]

Yes he did mention that there were pills to stop me going to the toilet frequently but I'm not able to empty my bladder fully. This bladder diary I've just completed will tell them more of the issue, My fluid intake doesn't match my output by quite a margin so I'll see what they say about it. I'm still taking Tamusolin pills which open the urethra to enable me to pee better.
It says on the bladder diary form to bring it with you to your next urology appointment which the consultant said would be in 12 months time !!!! I need to ring them as I don't want to post it.

12 months sounds along time , I’d be asking for 6 months , I’d be on phone to Sharon if I was suffering like you , abbi said just ring if you’ve a issue , I can understand with me extending the length of times between psa / mri tests , but not you
Poor

Yeah I was a bit gob smacked when he said see you in 12 months, They just tell you to go to A+E if you're having problems here, The thought of spending 7-8 hours in there isn't something I'm keen on. You're right about the communications up here though they're terrible.

[dozy]

Yes he did mention that there were pills to stop me going to the toilet frequently but I'm not able to empty my bladder fully. This bladder diary I've just completed will tell them more of the issue, My fluid intake doesn't match my output by quite a margin so I'll see what they say about it. I'm still taking Tamusolin pills which open the urethra to enable me to pee better.
It says on the bladder diary form to bring it with you to your next urology appointment which the consultant said would be in 12 months time !!!! I need to ring them as I don't want to post it.

12 months sounds along time , I’d be asking for 6 months , I’d be on phone to Sharon if I was suffering like you , abbi said just ring if you’ve a issue , I can understand with me extending the length of times between psa / mri tests , but not you
Poor

Yeah I was a bit gob smacked when he said see you in 12 months, They just tell you to go to A+E if you're having problems here, The thought of spending 7-8 hours in there isn't something I'm keen on. You're right about the communications up here though they're terrible.

Our doctors will tell you to goto hospital ( a&e) if they’ve have no appointments avaliable , though I’ve never tried to book to see them over prostrate as I’d ring urology nurse , it seems a totally different way of working / treating prostrate issues where you are , to where I am
I’ve had lots of cancellations operation ( separate issue ) these last few years , though have pre- op interview today
Have just got next psa test next fri , mri still waiting on date ,
As I say I can understand why they say I’m no concern to them , but with you having ongoing issues , you would be of concern , they’d be trying to sort issues , I do believe down here they’d be trying to get to the bottom of what is the issue

[lancpudn]

Yes he did mention that there were pills to stop me going to the toilet frequently but I'm not able to empty my bladder fully. This bladder diary I've just completed will tell them more of the issue, My fluid intake doesn't match my output by quite a margin so I'll see what they say about it. I'm still taking Tamusolin pills which open the urethra to enable me to pee better.
It says on the bladder diary form to bring it with you to your next urology appointment which the consultant said would be in 12 months time !!!! I need to ring them as I don't want to post it.

12 months sounds along time , I’d be asking for 6 months , I’d be on phone to Sharon if I was suffering like you , abbi said just ring if you’ve a issue , I can understand with me extending the length of times between psa / mri tests , but not you
Poor

Yeah I was a bit gob smacked when he said see you in 12 months, They just tell you to go to A+E if you're having problems here, The thought of spending 7-8 hours in there isn't something I'm keen on. You're right about the communications up here though they're terrible.

Our doctors will tell you to goto hospital ( a&e) if they’ve have no appointments avaliable , though I’ve never tried to book to see them over prostrate as I’d ring urology nurse , it seems a totally different way of working / treating prostrate issues where you are , to where I am
I’ve had lots of cancellations operation ( separate issue ) these last few years , though have pre- op interview today
Have just got next psa test next fri , mri still waiting on date ,
As I say I can understand why they say I’m no concern to them , but with you having ongoing issues , you would be of concern , they’d be trying to sort issues , I do believe down here they’d be trying to get to the bottom of what is the issue

I sent an email to my GP four days ago with yet more ongoing issues since finishing radiotherapy & still waiting to hear from him, The receptionist said he wont take phone calls so just email him, What a joke. I'm having chronic bowel incontinence now, That month long radiotherapy session back in February hasn't half messed up other body functions, It's been one step forward & two steps back, I daren't move more than 15 steps away from the toilet night & night at present.

[lancpudn]

Well my GP emailed me back after two weeks to tell me radiation damage to my bowels from radiotherapy is a known fact & can last many years after you've finished radio therapy......Deep joy nobody mentioned that to me at the time so I'm stuck with not venturing far from the toilet for years to come.
Still cant find out what the other PSA blood tests were, My doc says get in touch with my oncologist at Christies to address these bowel/nerve pain in both feet & the PSA test issues.
I did that & my oncologist says I need to speak to my GP about them !!!! I give up.