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A quick question

User
Posted 12 Apr 2019 at 21:06

Hi folks. 

I'm 51 now.   But from the age of 45 I've had all the symptoms listed on this site - not being able to wee properly in all the ways. Plus lower back pain but I do have actual back issues.  

The first PSA was normal and my GP was quite unworried. 

But still I could not wee. 

Next year I asked about getting it done again and he agreed but was not worried.  

My symptoms were/are quite bad so I pressed to get something (?) done. I was prescribed Tamulosin which makes me piss like a racehorse but reacts with some of my other meds to give me double double orthostatic hypotension. So I don't use it all the time.

So... Does the fact that the Tamulosin works mean that they are correct, treating this as something non sinister? 

And am I being over worried - I insisted on a DRE not long ago as I could not believe after 6 years of these issues no one had even suggested it. Should I just forget about it and wait till I am pissing blood? 

I just don't know?

 

Thanks. 

User
Posted 12 Apr 2019 at 22:23
Some questions:

- are you in England?

- what was the actual PSA result ... ‘normal’ could mean anything to a GP that doesn’t know much about PSA testing

- have you continued to have PSA tests regularly since then?

- if so, what have the results been?

- have you actually seen a urologist or has it all been managed by the GP?

If the tamulosin conflicts with other meds then you should really be asking for a change to another type. The back pain could be due to urinary tract infection or kidney problems, which could be caused by the difficulty in emptying your bladder. If you were my brother or friend, I would be telling you to ask the GP for a referral to urology for proper assessment, including another PSA test if you haven’t been having them regularly, a urodynamic test and possibly some scans. My husband had problems similar to those you are describing and was on satrap from the age of 35, not in his case due to enlarged prostate (which is what your GP seems to think you have) but for a muscular problem. Only a urologist could have diagnosed it.

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

User
Posted 12 Apr 2019 at 22:55

Hi there Lyn

Thanks for the reply  

Some questions:
- are you in England? Yes
- what was the actual PSA result ... ‘normal’ could mean anything to a GP that doesn’t know much about PSA testing  I don't know? Just that it was within normal levels - nothing to worry about 
- have you continued to have PSA tests regularly since then? Yes and always at my insistence. Same results as above 
- if so, what have the results been? 
- have you actually seen a urologist or has it all been managed by the GP?

There's never been any mention of a urologist - just that there are a number of conditions that can cause my symptoms and that in someone my age its very unlikely to be anything to worry about. Also that even if it was because its so slow to develop I might never need treatment  

 

TBH it's always at the back of my mind. My stream is about a quarter what it should be? 

 

Thanks again  

User
Posted 12 Apr 2019 at 23:36
That is shocking. Your GP is perhaps a bit naive; although it is true that prostate cancer is less common in the younger ages, we have members here in their 30s & early 40s - some of them have been diagnosed while still curable but sadly, we have also had a number of men younger than you who already had advanced cancer..

My advice would be to phone the GP practice and ask for the actual PSA numbers - or better still, call at the surgery & ask the receptionist to print them off for you. Then come back to us with the results.

And while you are at the GP surgery, perhaps drop off a short note to the GP explaining that due to the symptoms you are experiencing, and the difficulty in taking tamsulosin, you would like a referral to urology for proper diagnostic assessment including uro-dynamics.

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

User
Posted 12 Apr 2019 at 23:48

I was just writing to say get all your PSA test results from the surgery, but Lyn beat me to it!

I get all my blood/urine test results, and I keep them in an excel spreadsheet.

I take a paper copy to all consultations, and offer it to the consultant if relevant, and on a number of occasions they take it, because it's much easier to read than them finding the results in their computer. Also, GP and hospital test results don't seem to be visible to each other.

I get a copy of my hospital records when something notable happens (it's the only way I can get the blood test results from them), and I can see the consultants have added the spreadsheet I've given them to my records a few times.

User
Posted 13 Apr 2019 at 02:01

Right. I shall do that. 

Thanks for the advice. I am seeing the nurse on Tuesday so I shall do it then and get back  

 

Ta, Stuart 

User
Posted 16 Apr 2019 at 21:49

Hi there, 

I'm back with a couple of results

Nov 2017 - 0.4

Yesterday - 1.5

 

I don't know if this is enough or I'd it helps. 

I always sit down in the toilet - 1s or 2s. 

To read... I tried standing which seems to make things a tad easier...Still the same. A second or two half flow then a complete stop. Then fighting to get the  rest out. 

 

Thanks again..

 

User
Posted 16 Apr 2019 at 22:18
Okay, that’s within normal range if you haven’t been taking the tamsulosin regularly. But at your age, you should not have these problems emptying your bladder so should still ask for a referral to urology for uro-dynamic testing, etc. It will be via the non-cancer route so there maybe a long wait unless you can afford a private consultation?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Apr 2019 at 22:19

Your PSA is within normal levels.
However, I would be concerned about the almost 4-fold increase in 2 years.
At a minimum, have another test in no more than a year.

You should get referred to urology for the retention though (not emptying your bladder). One side effect of that can be a urinary infection, and that can raise PSA. Once you're there, discuss the PSA readings with them.

User
Posted 16 Apr 2019 at 22:34

OK  Thank you very much... 

It's really good to have this advice  

 

User
Posted 17 Apr 2019 at 01:46
General Practitioners are just that, ‘generalists’ who know a bit about everything. I am sure I know more about prostate cancer than my GP, having studied it intensively (and lived with it) for the last eighteen months.

My GP maybe studied urology a for a week or two during his medical training, amongst all the other medical specialties.

Request (insist on, but I get told off for using that word here) a referral to a urology specialist.

Best of luck.

Cheers, John.

User
Posted 17 Apr 2019 at 02:42

I spent the weeks between tests and test results reading up on PCa, and treatments, and side effects, particularly reading research papers. After diagnosis, I got a letter from my GP saying please come in for a chat. I went through the test results with him (he hadn't got them yet) and treatment options, and what I'd learned, and he said,
    "You do realise you know more about this disease than I do?"

He's a great GP, and I admire him all the more for his honesty.

User
Posted 17 Apr 2019 at 09:11

I think ‘insist’ is exactly the right word on this occasion - any GP that makes such inaccurate statements may need a strong steer :-/ 

There's never been any mention of a urologist - just that there are a number of conditions that can cause my symptoms and that in someone my age its very unlikely to be anything to worry about. Also that even if it was because its so slow to develop I might never need treatment” 

Edited by member 17 Apr 2019 at 09:25  | Reason: Not specified

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

 
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