Looks like your not the only one lanpudn not getting the expected treatment ( in Sunday’s sun
Just had psa test at Grantham , Sharon is ringing me with results next week ( strange as Sharon left job & a new urology nurse took over , no idea where she’s gone )
Nigh on 3 years since diagnosed with prostrate cancer , remember them telling me like yesterday , real shock , worrying , but 3 yrs on I’m still going & to be honest I’m better that when diagnosed , hardly get up in night for a pee , go hours& hours without needing to go in day , then it’s a amble to toilet , not the I’m going to ■■■■ myself , still a glass of pomegranate juice a day & a glass of red wine when on days off .
Now if everything health wise was going so well I’d be laughing !!
dozy:
Looks like your not the only one lanpudn not getting the expected treatment ( in Sunday’s sun
Blimey! Bad show eh!, Still not got my PSA results from the blood test I had in early May 
Rang my docs last Tuesday to see if they have any news & receptionist says nope no PSA results here, She gave me another number to try at Bolton hospital & surprise surprise they said speak to your doctor, I give up.
Still having to get up 5-8 times per night peeing which is as bad as when I was first diagnosed with prostate cancer. I’m due to see Christies oncologist at Bolton in September.
lancpudn:
dozy:
Looks like your not the only one lanpudn not getting the expected treatment ( in Sunday’s sunBlimey! Bad show eh!, Still not got my PSA results from the blood test I had in early May
Still having to get up 5-8 times per night peeing which is as bad as when I was first diagnosed with prostate cancer. I’m due to see Christies oncologist at Bolton in September.
I’ve got a phone consultation with Sharon ( urology nurse ) tues, psa result etc , though she’s already told mrs it’s the same as last time , so it’s taking 1/2 weeks for ulht to process psa results .
I did get surgery ( different issue ) cancelled 2 hrs before a week ago apx , surgeon needed else where apparently , told them I can’t change another shift so said it will have to be fri , now got 7 th but Lincoln not Grantham as he doesn’t do surgery’s on fri at Grantham , bit of a pain travelling to Lincoln but I’ve had to change so many shift lately I can’t keep doing it
Get on the wine / pomegranate juice , my prostrate consultant insists they’ve done nothing that could lead to the changes in me , like a 20 yr old peeing again , so I’m going with mrs it’s the wine / pomegranate juice ha ha
Nb I did all my blood test for diabetis at docs & the results were all back the next day
Well had phone consultation & don’t know what to think , apparently it’s 12 , which straight away I said I thought it was apx the same as last time , yes it is , it was 11.5 last time 9 the previous , I was under the impression they were all round the 9 , mrs who asks the questions was as well , anyway they said that’s fine as it’s been higher , 20 ish & they think the 11/12 is being caused by a infections as was the 20 , I’ve no idea on infections of your u/ tract , I’ve not had any treatment so no idea
Asked normal questions , blood , pain , how’s the water works & all is good
So I’m due a mri in nov apparently / psa so there going to see what they tell them , but very happy we me
I’m not so sure , I seem fine but 11/12 seems high & if it’s being caused by infections you’d think they’d look into why I’m getting them , but she said let’s see what nov shows / tells us , and go from there
dozy:
Well had phone consultation & don’t know what to think , apparently it’s 12 , which straight away I said I thought it was apx the same as last time , yes it is , it was 11.5 last time 9 the previous , I was under the impression they were all round the 9 , mrs who asks the questions was as well , anyway they said that’s fine as it’s been higher , 20 ish & they think the 11/12 is being caused by a infections as was the 20 , I’ve no idea on infections of your u/ tract , I’ve not had any treatment so no idea
Asked normal questions , blood , pain , how’s the water works & all is good
So I’m due a mri in nov apparently / psa so there going to see what they tell them , but very happy we me
I’m not so sure , I seem fine but 11/12 seems high & if it’s being caused by infections you’d think they’d look into why I’m getting them , but she said let’s see what nov shows / tells us , and go from there
From what I’ve read there are so many variables with the PSA test & to be honest after reading the literature MacMillan gave me I still cant get my head around it.
The last time I had a PSA blood test was July 2022 when I was first diagnosed with prostate cancer after 25 out of 25 biopsies were cancerous & the reading was 6.3!!!
I’ve only had one more PSA since then May 2023 & I’ve still not got the results from that yet, What a fiasco trying to speak to someone about it, Hopeless. I dare say I’ll find out in Sept 2023 when I have an appointment with Christies oncology consultant at Bolton hospital.
lancpudn:
dozy:
Well had phone consultation & don’t know what to think , apparently it’s 12 , which straight away I said I thought it was apx the same as last time , yes it is , it was 11.5 last time 9 the previous , I was under the impression they were all round the 9 , mrs who asks the questions was as well , anyway they said that’s fine as it’s been higher , 20 ish & they think the 11/12 is being caused by a infections as was the 20 , I’ve no idea on infections of your u/ tract , I’ve not had any treatment so no idea
Asked normal questions , blood , pain , how’s the water works & all is good
So I’m due a mri in nov apparently / psa so there going to see what they tell them , but very happy we me
I’m not so sure , I seem fine but 11/12 seems high & if it’s being caused by infections you’d think they’d look into why I’m getting them , but she said let’s see what nov shows / tells us , and go from thereFrom what I’ve read there are so many variables with the PSA test & to be honest after reading the literature MacMillan gave me I still cant get my head around it.
The last time I had a PSA blood test was July 2022 when I was first diagnosed with prostate cancer after 25 out of 25 biopsies were cancerous & the reading was 6.3!!!
I’ve only had one more PSA since then May 2023 & I’ve still not got the results from that yet, What a fiasco trying to speak to someone about it, Hopeless. I dare say I’ll find out in Sept 2023 when I have an appointment with Christies oncology consultant at Bolton hospital.
I’ve never had one as low as 6.3 , think the first one was in the 8,s , maybe 8.3 , I’m back with Sharon ( urology nurse ) who mrs said had left ( no idea what happened to new one ) & she’s a bit hard to fathom , as I say if she / they are saying I’m getting infections ( I’ve no symptoms as far as I’m aware ) you’d think they’d investigate , I know when I had abbi as soon as it went up (20 apx ) I was straight in for mri/ biopsy
Like now you’d think they’d prescribe anti biotics & do another psa
Went to see surgeon on a unrelated issue , he read my notes then proceeded to ask me about prostrate , said how was I getting on ( bit baffled as I though I was there for another issue ) , anyway he went through it and said, psa was 8 when I was diagnosed 3 yrs apx ago & was now 12 , that was ok , but reading the notes they believe it’s due to infections ? But no mention of what action is being taken , not happy , going to request I’m put on anti - biotics for a month then a psa test , need to get to the bottom of what is causing higher psa , said don’t worry every else is fine , no symptoms , biopsy’s etc are very positive , just need to get to the bottom of why I’m getting higher psa,s , nice bloke , very thorough .
Could do with him as my urology consultant
Should be due psa / mri but cancelled as due operation ( unrelated ) but still not had pre - op assessment so looks like could of had psa / mri , can’t see issue with psa as just a blood test
3 yrs now from diagnosis, still no symptoms, hope anyone who get it or any other illness is ok
dozy:
Should be due psa / mri but cancelled as due operation ( unrelated ) but still not had pre - op assessment so looks like could of had psa / mri , can’t see issue with psa as just a blood test
3 yrs now from diagnosis, still no symptoms, hope anyone who get it or any other illness is ok
I went for my three monthly prostap hormone injection yesterday at the local clinic, The district nurse finally tracked down that PSA blood test result I had done in June & it’s gone up slightly from 6.3 too 6.5, That’s the first bit of information I’ve had since I finished radiotherapy back in February, ■■■■ poor post treatment really. I’m seeing the oncologist at Christies next week. Nothings changed regards getting up on the hour every hour to pee at night. 
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
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.
That’s excellent news.
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.
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.
Keep us updated.
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
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.
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’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
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
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.