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My story - what to expect?

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User
Posted 18 Jul 2023 at 10:04

I'm a bloke about to hit 70. 

I've been plagued with bladder issues since my 20s. Two or three times a night was not unusual. My doctor didn't think there was anything wrong, put it down as psychosomatic and prescribed sleeping tablets so I wouldn't wake up so often! 

The issues carried on and I had various examinations and scans only to be told by one doctor "You've got a weak bladder". 

I was having PSA tests every 3 or 4 years but nothing showed up. Eventually I was diagnosed with an enlarged prostate last year and prescribed Tolterodine which didn't help at all. The problems actually got worse. Double voiding became quadruple voiding and I hit a record of 6 times one night although mostly it was 2 or 3. 

I was referred to a urologist in April 2022. I got an email from them 6 months later apologising for the delay and did I still want an appointment. I replied that I did but I still hadn't heard by April this year. I contacted them again and they said the average wait was 80 weeks which meant I wouldn't see anyone until the end of this year.

I asked for another PSA test  and was surprised to be referred to a doctor (not mine) who asked why. I explained my problems (even though they must have had the details) and a test was agreed. 

I've just had a call from the doctor to say my PSA was 6.45 and I was being referred under the Two Week Referral System.

So two points. 

1) If I hadn't asked for a PSA test I would  have probably not had another one until I see the urologist. Time for screening? 

2) Although I think it will be longer than two weeks before I see anyone what can I expect when I go?

 The doctor said an examination, and possibly a scan and/or a biopsy. 

I know that it may all turn out ok but any advice would be very welcome. 

Thanks 

Richard

 

 

User
Posted 18 Jul 2023 at 11:47
You may be different but I can outline my course of treatment so far if that helps

My PSA was 6ish and so referred to a Urologist who sent me for an echo scan - just lie on the bed with the sonar probe and the gel - just like a woman getting a baby scan.

Results were a slightly enlarged, 'hard' prostate.

Back to the Urologist who then requested an MRI scan - took a few weeks but result of that was a 1.4cm lesion on the prostate.

Again, back to the Urologist who then booked a biopsy.

Took 2 months to arrange and not a pleasant experience. First a finger up your bum and then lie on your side while she played around with my rear end - some pain killing injections and then 13 'snaps' that didn't exactly hurt but wasn't very nice.

Results took a month, Gleason 3+4=7, PSA was up at 10 and time to discuss treatment.

She offered my Brachytherapy (injecting 60 odd radioactive capsules into the prostate or the RARP - I immediately asked for RARP - get the bugger out and I'll live with the side effects!

2 Months for the operation which went better than I expected but the histology results were not what we hoped for - Gleason 4+5=9 T3a N0 - but PSA was <0.01 so now a waiting game to see if the PSA increases and what RT treatment I may need.

Each step took a few weeks so from PSA=6 to today was 12+ months.

Good luck and hope this helps

Steve

User
Posted 18 Jul 2023 at 16:02
Feel free to ask questions - there is loads of help on these forums.

To me, the biggest shock was learning that I had Prostate Cancer. Once I knew that I had it and that I wanted to 'fix' it, then the rest wasn't hard to deal with. None of it was pleasant of course, but it all turned out to be far easier to handle than I initially expected. I guess the fear of the unknown takes over a bit and so talking to others who had gone through it already was such a godsend.

The one piece of advice I got that helped was "Most men die WITH prostate cancer, not BECAUSE of it" - something else probably gets us first LOL

User
Posted 18 Jul 2023 at 22:09

Originally Posted by: Online Community Member
The doctor said an examination, and possibly a scan and/or a biopsy.

Your situation is unusual and with an enlarged prostate there's a slight chance that your raised psa is caused by that BUT I'd suggest you should have an MRI scan and a biopsy because at the moment there's too many unknowns that need to be sorted out before you can make an informed decision.

Jules

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User
Posted 18 Jul 2023 at 11:47
You may be different but I can outline my course of treatment so far if that helps

My PSA was 6ish and so referred to a Urologist who sent me for an echo scan - just lie on the bed with the sonar probe and the gel - just like a woman getting a baby scan.

Results were a slightly enlarged, 'hard' prostate.

Back to the Urologist who then requested an MRI scan - took a few weeks but result of that was a 1.4cm lesion on the prostate.

Again, back to the Urologist who then booked a biopsy.

Took 2 months to arrange and not a pleasant experience. First a finger up your bum and then lie on your side while she played around with my rear end - some pain killing injections and then 13 'snaps' that didn't exactly hurt but wasn't very nice.

Results took a month, Gleason 3+4=7, PSA was up at 10 and time to discuss treatment.

She offered my Brachytherapy (injecting 60 odd radioactive capsules into the prostate or the RARP - I immediately asked for RARP - get the bugger out and I'll live with the side effects!

2 Months for the operation which went better than I expected but the histology results were not what we hoped for - Gleason 4+5=9 T3a N0 - but PSA was <0.01 so now a waiting game to see if the PSA increases and what RT treatment I may need.

Each step took a few weeks so from PSA=6 to today was 12+ months.

Good luck and hope this helps

Steve

User
Posted 18 Jul 2023 at 15:37
Thanks Steve. That doesn't sound particularly nice!

It seems like I've entered a new world with new terminology.

I suspect I have a lot to learn.

Thanks again for taking the time to post.

Richard

User
Posted 18 Jul 2023 at 16:02
Feel free to ask questions - there is loads of help on these forums.

To me, the biggest shock was learning that I had Prostate Cancer. Once I knew that I had it and that I wanted to 'fix' it, then the rest wasn't hard to deal with. None of it was pleasant of course, but it all turned out to be far easier to handle than I initially expected. I guess the fear of the unknown takes over a bit and so talking to others who had gone through it already was such a godsend.

The one piece of advice I got that helped was "Most men die WITH prostate cancer, not BECAUSE of it" - something else probably gets us first LOL

User
Posted 18 Jul 2023 at 16:14
Thanks Steve, that's strangely reassuring!

Much appreciated.

User
Posted 18 Jul 2023 at 22:09

Originally Posted by: Online Community Member
The doctor said an examination, and possibly a scan and/or a biopsy.

Your situation is unusual and with an enlarged prostate there's a slight chance that your raised psa is caused by that BUT I'd suggest you should have an MRI scan and a biopsy because at the moment there's too many unknowns that need to be sorted out before you can make an informed decision.

Jules

User
Posted 19 Jul 2023 at 08:08
Thanks Jules.

I will bear that in mind when I do get to see whoever it is!

Richard

 
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