Had mri scan fri at Boston hospital which was ok , abt 40 mins , just poor lad who has cancer / had was there for a scan from what I understand to see if chemo had got rid of it , got himself in such a state which was understandable , but got me thinking when I was in mri scanner about things , really lovely people but was glad to get out of there in the end
Got phone call from my consultant today ( a different one ) who went through , was there a history of prostrate problems in family ( no ) was there blood in my urine ( no ) , was there blood in my ■■■■■ ( asked this before and couldn’t answer ) , but no , said I need a biopsy to see what the soft tissue on prostrate is ( been called lump, nodgel before ) , cancerous or not
I’m staying positive , I’m not peeing blood , none in ■■■■■ , I’m not in pain , loosing weight or feel ill , even went from 10 pm - 5.45 this morning before I had a pee , my understanding ( I can’t ask daughter / nurse ) as I’ve only told her of diabetis is that mri scan would of shown full body , it seems it’s only shown a abnormality on prostrate so hopefully if it is cancerous it’s not spread
It’s not easy at times as your mind is everywhere , lie awake for hours thinking about things
Hopefully reading this does make people get to docs ASAP if they start to pee a lot , this will be last post on this subject as I think I’m going to have a fight on my hands when biopsy Commes back so don’t think I’ll be in the right frame of mind to talk about things , my personal / family fight
All the best & just do me one thing , listen to me for once & get checked !!
Well after 5 weeks waiting for the result of the biopsy I finally got it today , done by phone by a consultant due to covid , out of 18 biopsy’s of the prostrate done only 3 were of concern , apparently there’s a grading of these , and it starts at 6 ( lowest risk ) - 10 highest ) ( lot to take in so I may of got 6-10 wrong , I’m graded at 6 which is the lowest risk , 10 being the highest
So the consultant said I could have a operation ( I’m guessing to remove prostrate ) or follow his advice which is watch & check ( psa test every 3 months & a mri scan every year , but if at any point I change my mind they will operate , I’ve decided to follow the consultants advice & watch / check , but if there’s any change in psa / mri I will have the operation .
Consultant did say with diabetis it is difficult to say what causes weeding a lot at times as prostrate or diabetis or both could be causing that . Now got to get diabetis sorted as issues with feet , apparently very week pulse in foot
But from what could of been really bad news turned out the best result I could probably of hoped for .
I’m still having a 6 monthly psa check as mine is hovering around the 5.5 mark and was 5:9 last time, I’ve had 2 biopsies and 2 mri’s all came back clear but the last one was in 2016 so wouldn’t mind another mri scan as I’m now 55 yrs old apart from peeing more often everything else is perfect down there but you still never know.
Still not had consultation , was told 3 monthly & mri I think yearly , impression I got was with consultant I first spoke too , but now 5 months & my appointment for 5 March has been cancelled & put back to the end of the month , & apparently consultation is with a urology nurse not a consultant .
Did psa blood test 26 th feb for 5 th March so would of thought someone could look at that and at least ring & say if it was different from psa I first did , they were great at the beginning but since I st consultation it’s slipped , hopefully lump , psa hasn’t altered so 5 months consultation instead of 3 won’t matter
Daughter , nurse , not happy
Anyway I guess I’ve enough with high blood pressure , poor circulation ( diabetis ) to be going on with for now
Had phone consultation , psa basically same as last time 8.5 , said good news , asked the normal questions , peeing a lot etc , but said it’s not easy with me as diagnosed with diabetis at same time so blurs thing as it could be 1 or both causing any problems I have , another phone consultation , psa test in June then mri Oct , but said it’s all positive at moment , can’t say anymore as need a pee , must go
Consultation today , last psa 8.5 , this time 20.4 ( yes I did say 20.4 ) , urology nurse said it’s bizzare , have you had a infection , do you cycle a lot , so got to have another blood test in 4 weeks + mri scan ASAP , not sure what to think other than I should of ignored consultants advice to have consultations every 3 months , mri every year & just had it took away , ive blamed everything on diabetis but who knows , me & mrs can’t think of anything different , other than blood test was at hospital not doctors
But cant see that being the reason it’s gone from 8.5 to 20 .4 , talk about one step forward , 40 back , even daughter who is a nurse is puzzled , even asked nurse if it could be diabetis tablets causing it , she didn’t think so & why didn’t it affect psa last time as was taking tablets then
Anyway look after your health , don’t end up like me !!
Result fro latest psa test 11 , so better than 20.4 but still none the wiser why it jumped up that high from 8 normally , waiting to do a mri scan & they want another psa test in a month to see if it’s dropped anymore , did say I’d wished I’d had it took away , but they said I’m doing well , but it does play on your mind
Now got to see specialist about heart apparently , forgot about it as just assumed I’d had heart mumur they said about from when I was a kid & never bothered me , maybe they’ve seen something , who knows .
Diabetic nurse this week so let’s hope she gives us some good news
Was thinking of finding some part time work , but not a day seems to go by where we’re not at hospitals , clinics , doctors etc, daughter / mrs have said no until we get better news , so maybe in time
9,3 now , so gone down a bit , going to put me on medication as I said I’d had enough of getting up 4/5 times in night , so tired , see how I get on with medication & go from there , another mri booked
Doctor wants to see me about diabetis as not happy with blood test results , legs / feet really bad & eye sight getting worse by day
Packed up work again , not sure where we’re going to go from here , getting fed up with it all
They’ve Postponed seeing consultant about heart murmur , but seems least of my problems at present
Hope your all well
Just had results of yearly mri that ended up as 16 months , instead of lump / nodule, now described as lesions, according to consultant it’s got slightly bigger , but he’s not overly concerned as psa is roughly where we started out 8 ( last psa 9 .3 ) , so have to go in for another biopsy ,
But the alarm bells rang with the letter we received , it hasn’t been found any where other than prostrate ( never mentioned it could go anywhere else ) , so in the 16 months we’ve waited for another mri it could of gone anywhere , not happy about that , letter also states cancer , again not a word that’s been said to me , though it has been said to wife , also given a book on prostrate cancer , strange as they’ve underlined a paragraph where it stated my level of 6 doesn’t normally move / get bigger etc , sobering reading
But I can’t risk leaving it another in theory another 12 months for the next mri that tells me it’s spread outside prostrate , if the recommend wait /watch again I’m refusing it , and after a lot of hours talking with mrs I’ve made my mind up to have it taken away , not a easy decision when you read the implications of it , but i can’t risk leaving it a year & end up with god knows what result , I wish I’d now gone against there recommendations when I was first diagnosed , wait & watch , should of just had it took away now
Be my last post until I get hopefully sorted , I’d not post this normally , but learn from me , if your peeing a lot get checked , don’t do a me & just carry on
I’m positive , it’s still within prostrate so I’m hoping removing it will work , I guess save me , not a good time , but got a loving family & we’re all staying positive
All the best to everyone
What are you having the whole prostrate removed ? They may not be willing to do it but rather just keep on monitoring it instead. Saying that a mate of my Dad had his removed and it’s the best thing he’s ever had done as he got no worries about it now, obviously a few side effects but nothing too drastic.
bald bloke:
What are you having the whole prostrate removed ? They may not be willing to do it but rather just keep on monitoring it instead. Saying that a mate of my Dad had his removed and it’s the best thing he’s ever had done as he got no worries about it now, obviously a few side effects but nothing too drastic.
I’ve been on monitoring for last 16 months , originally it was psa test every 3 months & mri every 12 months ( consultants suggestion ) , which seemed ok but 3 month psa ended up at 4/5 & mri at 16 months , though once I’d had mri things have moved quickly , but the alarm bells were in letter , we have not found cancer anywhere else , obviously my thinking is they could of , if I end up waiting another 12/16 months they could find it elsewhere , whereas now it’s localised to prostrate , I’ve read all the drawbacks but the one positive is I’m more likely to be here or n 5/10 yrs time than I would if I continue to just watch , as they suggest
I go in for another biopsy this week which to be honest I hated so I’mm having general anaesthetic, that will hopefully answer more questions as we’ve had lump, nodules , lesions, or as my urology nurse said it’s not lesions it’s cancer , but she said it’s not spread but the lump / lesions is larger
I know they say there trying to give you as normal life as possible but it’s always on your mind , I feel taking it away would give me a bit of peace of mind , we shall see
Well I wasn’t going to post but if anyone is starting out on this journey info may help , I had a biopsy apx a year ago , I was awake whilst this was done and it was very painful ( even though they insisted it couldn’t be , and I didn’t like it to be honest , I was fine the next day
This time I told them I wanted to be asleep , all was fine , much better it seemed , just a day case , next day I had burning when I peed , but nothing I couldn’t put up with , following day fine , like I never had anything done , then I spent the next 10 days peeing every 15 mins night / day with a constant feeling I neede to pee, creased up in pain whilst peeing , back in hospital , checks done but told recovery would be 6 weeks , I’d of jumped off a bridge ( seriously ) , slept on bathroom floor , wasn’t worth going back to bed , pain got worse & worse , eventually was ■■■■■■■ myself myself , just couldn’t control myself , back in hospital , more tests , speaking to other hospitals as so much blood , but still came back with it could take more time to settle
After 10 days I suddenly felt the desperate feeling to pee starting to subside , now I’m not perfect but more myself , I can’t see what effect asleep to wake would matter other that you have a catheter when asleep , I had a tenplate biopsy this time , no idea first time , but I’ll be going for the awake option next time ( though hopefully there isn’t a third time ) ,
Spoke to my urology nurse & everything is good , the biopsy is not showing lump / lesion/ nodule on prostrate has got bigger , it’s showing exactly the same as when first diagnosed 18 months ago , they believe what was shown on mri was inflammation, no idea why it was, could be infection etc
So after a meeting by consultants I’m continuing on a watch / wait program of psa every 6 months , yearly mri
I said I was very concerned about it spreading , she said yours is in the middle of the prostrate , is no different to when first diagnosed , there is no reason it would spread.
I was adamant I was having it taken away , but daughter ( nurse ) has said if no change then it makes no sense , your exactly as you were 18 months ago
She’s far more knowledgeable of these things than me , spoke to consultants at her hospital , read up on it , so going to wait for letter confirming what urology nurse said & take consultants / urology nurse & daughters advice unless letter says different
So any one going through this stay positive , I’ve had days where I’ve looked out living room window thinking how many more days will I be looking out here , worrying about wife / my girl if I’m not here , sat on bathroom floor after ■■■■■■■ myself thinking I can’t carry on ( after biopsy )
But you got to stay positive & if you’ve my original symptoms get checked , I left it years , thinking it was diabetis , thinking it would go away , it didn’t & it seems I’ve been lucky , get checked !!!
Slightly wrong on last post , psa every 6 months , mri every 18/24 months ( not yearly ) now , as in the consultant words ( all biopsy’s were negative ) ( bit baffling as 3 out of 18 were of concern first time ) , I wasn’t happy about leaving mri for 18/24 months , but he said if a psa is high , we will do another within a month & if it’s still high we will do a mri immediately ,
Strange thing is since biopsy I’m peeing completely normal , we brought this up with consultant and he didn’t have a answer , so mrs asked if it was all the red wine & pomegranate juice I’m drinking ( she just had to ) , consultant looked a bit bemused , I just looked at the floor
Apparently pomegranate juice & red wine is good for the prostrate , I’ll have to keep the mrs off google from now on
Got letter from consultant, quote , interestingly the biopsy is not showing any cancer , so we’ve gone from 3 out of 18 biopsy’s taken showing cancer 18 months ago to none showing cancer on these biopsy’s , after speaking to him to confirm this , he said yes , we’ve double checked and your recent biopsy is not showing cancer
He’s no answer as to why as I’ve had No treatments , but he just said it really is great news , though puzzling
Strange as since recent biopsy I’ve been like 10 yrs ago , hardly get up in night , go hours before I need a pee , , I did laugh at mrs with red wine / pomegranate juice , but I’m struggling to think ( had no treatment ) what else could it could be , I did ask about biopsy as asleep so didn’t know what they did , but he said it was just a standard
Prostrate biopsy ( template ) so it wouldn’t of had any effect
Over the moon but I’m still wondering why / how the cancer has gone apparently , I guess it’s just life , as my urology nurse said about time you had some good news , she’s been a star
Still the same since biopsy , llke 10 yrs ago , if I get up in night it’s once for a pee & can go for hours in daytime with out needing to go , got a psa test in June so hopefully more good news
Won’t be with abbi my urology nurse as she’s moving onto other work , sad ( upset ) as in the really dark ( worrying ) times she’s always been there to talk , help me , wished her well but with a sad heart , she worked with my girl when she was at Grantham hospital , same as the mrs , so she’s a good friend as well
Must be getting old as mrs says I haven’t a ounce of emotion in me , but I had I had a lump in throat , upset when she rang me for the last time ,
Anyway if anyone gets prostrate issues , stay positive & hopefully you’ll get a abbi to help you through it
Nb no idea if it works , but mrs still get me to drink a bottle of red wine a week / and a carton of pomegranate juice ha ha , love her , she’s got a heart of gold & is doing it with the best intentions
Latest psa 9.1 , down from 9.3 , not dropped much , but at least dropped , my new urology nurse wants another blood/psa test as not happy , to0 high , told her I’ll do that , mri but no way was I having another biopsy ( said getting in front of my self )
Said & don’t have ■■■ for 48 hrs before this blood test , didn’t know where to look ( my mrs has put her upto that as there
Mates )
Bit worried about loosing abi my original urology nurse but this one seems ok , though my mrs & her seem to be doing a lot of whispering !!
Thought I’d keep you updated for anyone starting out on this journey , I remember vividly when first told I had a lump on prostrate , doctors face & him telling me I’d had it along time had me looking out living room window , thinking how many more times will I see this view , worried sick about my mrs & my girl , telling my mrs , telling my girl who was in bits
Anyway nigh on 2 years later I’m still here , better if anything as since last biopsy I’m back to peeing like a 20 yr old ( hardly get up in night ) , no-one has a answer to that , last biopsy showed no sign of cancer ( though no treatment ) , can’t really get a answer on that , abi my old urology nurse told mrs I still have it , but lowest risk , basically I’ll die of something else before prostrate cancer ( hopefully though not for a lot of years
Anyway stay positive , and if you’ve any symptoms just see your doc .
This is kind of letter you get ( new nurse so looks like a bit of a communication failure ha ha ( they’ve all been brilliant though ) as have mrs / my girl
Next psa sept , hopefully lower than last 9.1 score
Only just seen this thread, I started to have problems peeing in July this year, Went to see the doctor for a prostate exam & he said it feels abnormal & hard so sent me for a biopsy at Bolton in August, 24 of the 24 biopsies were cancerous I had CT scans, MRI scans & Bone scans at Bolton hospital & they showed the cancer was localized just in my prostate & hadn’t spread to anywhere else.
I started on bicalutamide tablets & now injections every three months of Prostap androgen hormone treatment for the next two years, I’ve got a flow test to do in October & keep a record of my toilet visits day & night then I start 20 straight days of external beam radio therapy at Christies Oldham & Salford starting November 16th.
My prostate adenocarcinoma Gleason score was 9 out of 10 (almost the worst possible score) & my PSA score was 6.3. The joys of getting old eh!.
lancpudn:
Only just seen this thread, I started to have problems peeing in July this year, Went to see the doctor for a prostate exam & he said it feels abnormal & hard so sent me for a biopsy at Bolton in August, 24 of the 24 biopsies were cancerous I had CT scans, MRI scans & Bone scans at Bolton hospital & they showed the cancer was localized just in my prostate & hadn’t spread to anywhere else.I started on bicalutamide tablets & now injections every three months of Prostap androgen hormone treatment for the next two years, I’ve got a flow test to do in October & keep a record of my toilet visits day & night then I start 20 straight days of external beam radio therapy at Christies Oldham & Salford starting November 16th.
My prostate adenocarcinoma Gleason score was 9 out of 10 (almost the worst possible score) & my PSA score was 6.3. The joys of getting old eh!.
I can only wish you the best , I recognise a lot of what you say but not all , not had bone scans (mri/ the biopsy ) was as far as I went , now psa every 6 months / mri 2 yrs ( does change a bit with who you speak to though ) , just had psa & consultation with my urology nurse beginning of Oct , fingers crossed for both of us , and any one else with it