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
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.
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
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.
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.
Wonders never cease! Just got the results of the PSA blood test through the post I had last September
I had a PSA reading of 0.16 in June & this one is 0.14. Really happy about that after spending months trying to find out what this latest test result was.
I have a bloods pink slip to get a PSA blood test at Bolton hospital this month but haven’t been yet.
Next appointment with Christies oncologist is in September but, it’s just a phone call appointment & my next hormone three monthly injection is in March. Still too many problems from the radiotherapy like constant nerve pain in both feet, Still up all night peeing & bowel incontinence which affects every thing you do.
What a joke!!! This original appointment from December 2023 has been cancelled twice, I got a letter last week to attend Christies Bolton today, I turn up at the correct day/time only to be told yet again it’s cancelled & rescheduled for 23rd July. Bleddy ridiculous as I noticed a weird lump in my lower bowel area around a month ago, My doc has still not replied to my email, he still won’t do face to face appointments nor telephone calls, you have to email him & to top it off this morning the only parking space available was a bus ride distant away from the Christies dept, I was soaked through FFS. Oh & to rub salt into the wound I asked for my PSA blood test result I had at the beginning of February this year to be told we cant find it on the system.
To all you lads with prostate problems…don’t give up.
GOM’s story:-
I’ve been lucky, I was diagnosed with prostate cancer and an enlarged prostate in 2015, I’m 85 and still ticking over, my last PSA test showed 25.1, I suffer from ‘Nocturia’ (getting up during the night to pee) . When I was diagnosed I said to the consultant urologist “well take it out then”, “No need” said he, “it won’t affect your natural lifespan” So here I am, no treatment , just a 6 monthly PSA test (it fluctuates a bit).
A bit of research has revealed that if every man who dies (from whatever cause) were the have an autopsy, a vast majority would have cancer cells in the prostate.
So don’t give up lads, if you’re concerned. ask for a simple PSA blood test
Well the good news from yesterday’s appointment with the Christies oncologist at Bolton was I finally got the PSA test result I had done in February which was 0.08.
The lowest reading yet.
I mentioned the lump I found in my lower abdomen & could she have a look at it to be told (exact words) We don’t do lumps in this dept you’ll have to see your GP to get it checked out I’ve sent three emails to him over the last month & still no reply & still he won’t do telephone calls.
If I don’t get a reply before the end of the month, I’ll just have to go to A+E.
Hello long time no post , well we had our last psa / mri that showed a slight increase in psa ( put down to infections ) & no change in mri ,All good we thought , but apparently 4 yrs apx ago when I was diagnosed with prostrate cancer the noticed a small cyst on my kidney , that had now turned into a complex cyst .
They requested a cat Scan that confirmed it , then said they wanted a biopsy , biopsy done that we were told showed a malignant tumour on my kidney of medium to small size ( not good ) , we were then told we would go under a top consultant at a Leicester hospital , we then received contact from Leicester saying after reviewing my notes they were not happy about the rise in my psa being put down to a infection , apparently in 33% of cases a rise in psa can be the cancer becoming more aggressive .
They told me the wanted a biopsy to confirm if there was a change in my prostrate cancer & wouldn’t act on the tumour on my kidney until they’d got that result as it could be the prostrate was the more important cancer to deal with , it looked like the tumour was confined to my kidney , we then got the result which did show no change in the lump / nodule / lesion on my prostrate .
So the decision was made to get me in for key hole surgery asap to remove the tumour , all explained to me & it sounded positive , and no alternatives so it had to be done , went in for pre - op & al seemed fine until lady said we know about you heart murmur but there’s no mention of a irregular heart beat ? No I’ve no knowledge either , add it to list , so with high blood pressure they were concerned but I just said operate , if we leave it the cancer could spread , they agreed .
Had op , was a bit taken back at 1 in 30 chance of not comming out of op but as I said , no alternative ( wife / my girl in bits , came out of op , and still recovering , but age / multiple illnesses doubt I’ll ever fully get back to myself .
We then after a month saw a consultant who explained there was a normal & a abnormal tumour , obviously abnormal is harder to treat , mine was normal , he then went onto explain they grade tumours 1-11 , 11 being aggressive , normally outside kidney , mrs was thinking the worst , she was all over the place , first time it got to me & my hands started to shake as I guessed mine was 11 , but no my tumour was graded 0 , happy days , I was discharged back to Lincolnshire with mri scans at 1 yr /3 yrs / 5 yrs & if all ok then discharged completelely .
My thoughts are 2 lots of cancer !! But how lucky have I been , if I hadn’t had prostrate cancer , regular mri scans we’d of most likely never been aware of the original cyst & it eventually becoming a malignant tumour , and if I’d not had a tumour on my kidney my notes wouldn’t of been passed to specialists at Leicester who wanted to make sure the higher psa wasn’t the cancer becoming more aggressive
Best of health to everyone , and stay positive , it s not good news getting cancer of any description but there as in my case can be positive outcomes .
I’ve been for multiple blood tests, PSA included over the last two months & I was supposed to get a telephone appointment with Bolton urology on the 14th October at 3:30pm, 5:30pm came around & no call.
My missus arrived back from shopping then, so I went out to get the bags in & sods law they bloomin’ rang whilst I was doing that & I missed the call.
I’ve got another telephone appointment rescheduled with them for the 16th December.
Thanks lancpun , hopefully you get there , very lucky with wife being lincs nhs employee as she sorts appointments etc out , Leicester we’re really good , persisted until they got me though it was all pretty quick so told of appointments when at another appointment .
This old lad still ticking over 9 years after being diagnosed (long may it last). Annual monitoring, phone appt.next week, latest PSA…31 . 9 years ago it was 27
When I was diagnosed I asked the consultant to ‘take it out’, “no need” says he, “if won’t affect your life span”
It is said that if an autopsy was performed on ALL male deaths, traces of cancer would show in all prostates.
Think my highest psa was mid 20,s g o m , I’m fairly sure a mri / biopsy followed very quickly .
Got blood test for psa tomorrow , phone consultation mid nov , hopefully goes downwards for a change
Good to hear another one doing well , positive news is always good .
Last phone appt. I had I did ask the question ‘how high PSA before you do any treatment’? “Oh, high 40’s low 50’s” was the reply.
A couple of year ago I had a PSA blood test but at the same time I had a urine infection, the reading shot up, I panicked, “don’t worry GOM, it’ll go down next test”. It did.
I consider myself very lucky that my ‘problem’ is reasonably stable, there are a lot of men out there who are not so lucky.
Sods law really is coming into play lately! Ever since I finished radiotherapy for prostate cancer, it’s left me with bowel incontinence, The McMillan people said it affects ‘X’ amount of people in one hundred, Can’t remember the number.
I had a colonoscopy two weeks ago to see if there’s anything wrong in there, The polyps they removed were benign & I was all clear.
They arranged for me to have a SeHCAT scan also & that appointment arrived through the post this morning for the 4th November.
The trouble is My right knee blew out moving some furniture three days ago & I’m bedridden at present.
I’ll have to cancel it, as I can’t even put any weight on that leg, let alone try to walk on it. I’ve been waiting ages for these two appointments, too.
Strange one g o m the infection one , my psa has risen slowly & has always been blamed on infections , though I’ve never had any symptoms/ treatment .Whereas Leicester ( a different trust to my normal one ) requested a biopsy immediately when seeing my psa rising stating psa rising can in 33% of cases be the cancer becoming more aggressive , it proved not to be , but I will certainly be questioning the reason being infections in future .
I’ve sent three emails to him over the last month & still no reply & still he won’t do telephone calls.
