Newbie waiting for urologist appointment

User

Posted 19 May 2017 at 17:55

Hi, I am a new member 63yo and awaiting appointment with Urologist, have a PSA 6.9 up from about 2.5 a couple of years ago, symptoms are frequent trips to loo especially at night,slight problem maintaining erection (possibly age related) prostate is large, had DRE 2 years ago but nothing unusual according to GP. Just had CT scan which shows large prostate.GP has referred me to Urologist did not do DRE.

My flow is not as good as a couple of years ago and takes a while to have a pee but no pain, just frequent. Had full bloods done and nothing out of ordinary for my age other than PSA.

I eat well stay reasonably fit, don't drink very often just a beer every couple of months or so. Moderate coffee consumption.

Just interested if anyone has any comments or advice.

Iam not too stressed at this stage, may be nothing too serious, I hope. But what will be, will be.

Thanks guys in anticipation.

User

Posted 19 May 2017 at 19:37

Hi Stevo

i was / am in a similar situation

read my profile and you will see i had psa 5.2 which rose over 8 mths to 8.0

had biopsies which have all come back negative, urologist says my high psa is due to BPH enlarged prostate

now waiting 6 mths for retest of PSA to see if any changes either up or down

It is a very worrying and stress ful time, like being on a roller coaster , but you cannot get off

good luck

Dave

User

Posted 19 May 2017 at 18:59

Hello Stevo and welcome to the site.

Let's hope the large prostate is a sign of BPH (Benign Prostatic Hyperplasia) which is a nuisance but not Prostate cancer.

At least the ball is rolling for you and you know that whatever the outcome, you are on the way to treatment.

Fingers crossed for you

I expect some of the men will be along to advise you so hang in there

Best Wishes

Sandra

******

We can't control the winds - but we can adjust our sails

User

Posted 20 May 2017 at 08:49

Thanks Sandra and you too Dave, I suppose I just have to wait until I get the appointment, trouble is the hospital here is busy busy, could take a while GP asked for urgent appointment, I hope they oblige.
Forgot to mention sometimes I feel as though someone has punched me in the back, but maybe that is just posture.
Thanks again for the comments.
Stevo.

User

Posted 20 May 2017 at 10:22

My advice is to take someone with you to the urologist appointment. It might be overwhelming and you may not take in or remember everything that is discussed. My husband was put on Bicalutamide to shrink the tumour (2000). Things probably have changed and consultants have different ways of dealing with the situation.
Talk will then turn to treatment.
Maz.

User

Posted 20 May 2017 at 13:50

Stevo, your symptoms suggest more info is required to make a diagnosis. I’ve had a few visits to hospital of late, all good service. My GP had requested urgent referral which from uro reply I was seen within 2 weeks.

Good luck

Ray

User

Posted 20 May 2017 at 17:13

for our age group Stevo

NICE recommend a fast track appointment with Uro within 2 weeks for any PSA result over 4.0

which is what happened with me

and you should have the same

Take it as it comes, nothing you can change, yours sounds very much like mine

good luck , keep us informed of progress

Dave

User

Posted 20 May 2017 at 22:33

The 2 week target for fast track referrals is usually measured to initial appointment, and normally the scan would come after that. It may be in this case that referral to scan was within timescale and the delay now might simply be because the radiologist and urologist need to interpret the scan results and determine next steps?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 21 May 2017 at 07:16

Hi all, thanks for the support and advice.

Should have mentioned before that I am English but live in Australia, this is in my opinion the best forum I have come across.

Regarding appointments things are a bit different here in Western Australia, WA stands for wait awhile, Lol.

Stevo.

User

Posted 21 May 2017 at 10:32

Hi Stevo, you would probably also like YANAnow (you are not alone now) a forum created by one of our old and much loved members who lived in Australia. It has thousands of members from all over the world and you can search by diagnosis type, treatment group, etc.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 21 May 2017 at 14:33

Hi Stevo,

I found once I was in the system I was well looked after from all the professionals so lets hope you get the same sort of care.

Good luck John.

User

Posted 04 Jul 2017 at 18:02

Best wishes for tomorrow ,what ever the results are at least a treatment plan can be put into place .
Debby

User

Posted 21 Mar 2018 at 20:16

Acknowledging that it may be a bit different in WA, I would still want a referral back to urology. You may be suitable for a TURP to ease urine flow through the humongous prostate and the added advantage would be that the prostate material could be examined in detail for signs of prostate cancer. That is quite a big PSA rise even for a very large prostate but if the urine is smelly, it seems you may also have one of those very persistent UTIs that don't respond to normal antibiotics.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 22 Mar 2018 at 10:48

Have you had an MRI scan?

User

Posted 22 Mar 2018 at 11:43

Ask your Urologist for an MRI.

Surprised you haven’t had one already.

Good luck!

User

Posted 14 Apr 2018 at 00:59

Seems like a sensible way forward, should ease the urinary problems and getting some tissue into a lab for testing will be reassuring for you. Did they not do an MRI as part of your template biopsy?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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User

Posted 19 May 2017 at 18:59

Hello Stevo and welcome to the site.

Let's hope the large prostate is a sign of BPH (Benign Prostatic Hyperplasia) which is a nuisance but not Prostate cancer.

At least the ball is rolling for you and you know that whatever the outcome, you are on the way to treatment.

Fingers crossed for you

I expect some of the men will be along to advise you so hang in there

Best Wishes

Sandra

******

We can't control the winds - but we can adjust our sails

User

Posted 19 May 2017 at 19:37

Hi Stevo

i was / am in a similar situation

read my profile and you will see i had psa 5.2 which rose over 8 mths to 8.0

had biopsies which have all come back negative, urologist says my high psa is due to BPH enlarged prostate

now waiting 6 mths for retest of PSA to see if any changes either up or down

It is a very worrying and stress ful time, like being on a roller coaster , but you cannot get off

good luck

Dave

User

Posted 20 May 2017 at 08:49

User

Posted 20 May 2017 at 10:22

User

Posted 20 May 2017 at 13:50

Good luck

Ray

User

Posted 20 May 2017 at 17:13

for our age group Stevo

NICE recommend a fast track appointment with Uro within 2 weeks for any PSA result over 4.0

which is what happened with me

and you should have the same

Take it as it comes, nothing you can change, yours sounds very much like mine

good luck , keep us informed of progress

Dave

User

Posted 20 May 2017 at 22:33

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 21 May 2017 at 07:16

Hi all, thanks for the support and advice.

Should have mentioned before that I am English but live in Australia, this is in my opinion the best forum I have come across.

Regarding appointments things are a bit different here in Western Australia, WA stands for wait awhile, Lol.

Stevo.

User

Posted 21 May 2017 at 10:32

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 21 May 2017 at 14:33

Hi Stevo,

I found once I was in the system I was well looked after from all the professionals so lets hope you get the same sort of care.

Good luck John.

User

Posted 25 May 2017 at 12:17

Hi all,

As mentioned my GP requested a priority appointment at the Hospital to see Urologist, well came today for 02/08 was hoping to get one earlier so called them but no chance.

They push regular PSA testing and then when you get abnormal findings you can't get to see the Uro, bit dissapointed.

Oh well, back to GP he may be able to sweet talk the receptionist, I hope.

All the best

Stevo.

User

Posted 04 Jul 2017 at 15:08

Hi everyone,

Got a cancellation appointment for tomorrow 5/7 with urologist, so kind of a bit stressed tonight, update you tomorrow night. What will be will be.

Stevo.

User

Posted 04 Jul 2017 at 18:02

Best wishes for tomorrow ,what ever the results are at least a treatment plan can be put into place .
Debby

User

Posted 05 Jul 2017 at 12:56

Saw uro today, DRE, prostate feels very large and smooth but firm, he did not say hard just firm. Done another psa, and urine test just procedure to rule out infection, which he doesn't think there is.

Wants a template biopsy but can wait until I have returned from Thailand so that will be done around mid August hopefully.

Feel a bit more relaxed now the wheels are turning.

Stevo.

User

Posted 21 Mar 2018 at 19:15

Hi all, been a while since last post but here goes.
Had biopsy transperineal in october no cancer detected. Had cystoscopy about 4 weeks ago, uro or whoever he was said prostate is humungous in other words big. No treatment offered apart from prazosin to relax muscles to help me pee. Gp done psa it is 13 and just done another today get result on friday, have done ultrasound and not emptying bladder hence continual uti's just finished 20 days of Bactrim but still generally feel the same, lethargy, down in sorts, pee stinks, get up 5-8 times a night to pee, getting me down now.
Have read biopsy has 34% false negative, not worried about what is, really I am but just want answers.
Sorry folks but I realise there are many people in same position but you know how it is.
I just want my life back.
I live alone apart from my cat and I swear he is sick of it also.
Forgot to mention been to ED twice now with unbearable groin hip and back pain, told go home and see GP, he is good but obviously doesn't know everything, he put me an anti-inflamatory which was no use either.
Will let you know what latest PSA is.

User

Posted 21 Mar 2018 at 20:16

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 22 Mar 2018 at 02:56

Thanks for responding, I have to go back to uro in May but never see the same one. I have booked a longer appointment with GP for tomorrow hopefully may be able to push him to put pressure on urology a bit.
This is getting to me a bit now, last night was continually back and forwards to the toilet. I will suggest TURP tomorrow I will also ask about repeat biopsy, with prostate so large it is a possibility they missed the needle in the haystack.
Thanks for the support.
Steve.

User

Posted 22 Mar 2018 at 10:48

Have you had an MRI scan?

User

Posted 22 Mar 2018 at 11:18

Have not had an MRI scan just psa tests, biopsy, cystoscopy and ultrasound. Difficult to get MRI scan via a GP has to be a referral by a specialist or ED or private and I cannot afford that. Thanks.

User

Posted 22 Mar 2018 at 11:43

Ask your Urologist for an MRI.

Surprised you haven’t had one already.

Good luck!

User

Posted 22 Mar 2018 at 11:49

Yes I will, thanks.

User

Posted 23 Mar 2018 at 08:08

Well! Just got back from GP, PSA down to 11 urinalysis not back yet, prescribed Amoxycillin 500mg 3x day. I think maybe time to find new GP, running late by 1hour again everything was a rush didn't get time to talk much, Sorry just letting off a bit of steam, have appointment for next Thursday. Will have to start looking for new GP monday.
Steve.

User

Posted 13 Apr 2018 at 17:50

Hi, back on Bactrim and off amoxycillin, getting confusing. GP is writing to the urology dept and suggesting that maybe I need a Turp due to constant UTI's and as suggested by Lyn the tissue removed would be tested.

Steve.

User

Posted 14 Apr 2018 at 00:59

Seems like a sensible way forward, should ease the urinary problems and getting some tissue into a lab for testing will be reassuring for you. Did they not do an MRI as part of your template biopsy?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 14 Apr 2018 at 15:05

Did not do an mri the transperineal biopsy was ultra sound guided (definitely transperineal ). To get an mri here it is difficult, I did have CT but was not much good apart from showing the size of prostate which sparked off the whole saga, then psa and uro and multiple psa tests, biopsy, bladder capacity ultrasound and then cystoscopy etc but no mri as yet.
Originally the CT was to confirm diverticular disease which it did.
Have another 10 days and off to gp for another urinalysis, psa and another script. Middle of May I see uro again.
Retension is getting bad again, not much sleep last night but eased again now, thought I was off to hospital for a midnight visit.
I have a funny feeling that prostate has grown as getting more problems urinating now than a month ago, psa was down to 11 last test from 13, I am pretty sure it was the same Lab.
Thanks
Steve.

Edited by member 14 Apr 2018 at 15:08 | Reason: Not specified

User

Posted 14 Apr 2018 at 15:20

Forgot mention I had a colonoscopy but that was after the psa13 test.They removed some polyps but were tested and found to be ok.

User

Posted 16 May 2018 at 18:16

Just a quick update after visit to uro today, he said psa 15 now, still on Bactrim (been on it for 8 or so weeks) in attempt to prevent uti, another dre which he said nothing abnormal other than prostate being very large.
Retention a big problem over last couple of weeks had an ultrasound today and after a pee still had 200ml in bladder.
Urinalysis tommorrow, back to uro in 1 month and discuss future treatment then, he said turp not an option at this stage, he tried to get me on Avodart but I am not happy about possible side affects, my girlfriend is only 42, say no more. Continue with Prazosin.
Bitter sweet day, I got my Australian citizenship granted today, don't feel like celebrating.
Thanks, just needed to release some tension.

User

Posted 22 Jul 2018 at 01:50

Yes, this is a great forum. I'm in a similar position - a large prostate but a nodule felt on the right. Panic! PSA latest was 7.4, up from 6.3 in a month, which Urologist said was ok for age 72. I'm to have a biopsy quite soon but don't know whether I'll have an MRI. I hope so, before the biopsy. I'm trying not to read too much as it will freak me out. I'm like that. (I live in NZ.)

User

Posted 15 Aug 2018 at 21:55

Just a quick one. Biopsy on 3 September and Urologist rang and said no MRI. So a nervous 18 days to go now. No symptoms, just the suspect DRE exam. No further PSA test since last one at 7.4, which he said was normal for me. Just have to take it as it comes and think pleasant thoughts...

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