Prostate cancer. A useful resource.

[DMC65]

I’m a bit unique as I have chronic retention and have to self catheterise three times a day so I don’t have the usual problems of constantly peeing in fact the opposite I never need to get up in the night and very rarely need a pee in the day. However I do have bowel problem that is awaiting a diagnosis from a colonoscopy I had a month ago no results back yet but I do regular pelvic floor exercises to help my bowel. The reason I could not have RT was due to this problem which could be made even worse especially if im diagnosed with IBS or Colitis which has been tested for in biopsies.

I took have, or should I say had chronic urinary retention. In fact when I hady first visit to the urology consultant due to a PSA of 7.6 after 'emptying' my bladder for a flow test, it was discovered I still had 3.2 litres in my bladder. I was then immediately catheterised and had the catheter in for 9 weeks until I was shown how to self catheterise like yourself. This was last April
In that time I had an MRI which showed scarring, a bone scan, which came back clear and finally a biopsy, which had to be trans pereneal as the suspected area was on the anterior of my prostate.
It was initially thought my retention, along with a urinary infection could be the cause but thankfully my consultant went ahead and booked me an MRI and that eventually led to my cancer diagnosis with a Gleason score of 7 (3+4)
I was given three options. Active monitoring, radiotherapy and surgery. After deciding that active monitoring was not an option and with discussions and advice from both surgeon and radiotherapy oncologist, they both suggested surgery due to my age (58 at the time) I opted for the robotic surgery to have my prostate removed. I had the op in November 30th and my first follow up appointment on January 16th this year, which showed that my PSA was undetectable.
I was still intermittently self catheterising 3 to 4 times a day and had not peed normally since the first visit when I had a catheter inserted. Over the weeks following the op and after the removal of the supra pubic catheter I had in post op, I did start to notice more sensations of needing to 'go'.
To get to the point of my long winded post. I can now pee normally and very much like the proverbial racehorse. So fingers crossed for you that it works out as well for yourself. The surgeon did suggest that it might work as one of the urinary sphincters are removed with the prostate, but there were no guarantees .

 

[Speve]

I took have, or should I say had chronic urinary retention. In fact when I hady first visit to the urology consultant due to a PSA of 7.6 after 'emptying' my bladder for a flow test, it was discovered I still had 3.2 litres in my bladder. I was then immediately catheterised and had the catheter in for 9 weeks until I was shown how to self catheterise like yourself. This was last April
In that time I had an MRI which showed scarring, a bone scan, which came back clear and finally a biopsy, which had to be trans pereneal as the suspected area was on the anterior of my prostate.
It was initially thought my retention, along with a urinary infection could be the cause but thankfully my consultant went ahead and booked me an MRI and that eventually led to my cancer diagnosis with a Gleason score of 7 (3+4)
I was given three options. Active monitoring, radiotherapy and surgery. After deciding that active monitoring was not an option and with discussions and advice from both surgeon and radiotherapy oncologist, they both suggested surgery due to my age (58 at the time) I opted for the robotic surgery to have my prostate removed. I had the op in November 30th and my first follow up appointment on January 16th this year, which showed that my PSA was undetectable.
I was still intermittently self catheterising 3 to 4 times a day and had not peed normally since the first visit when I had a catheter inserted. Over the weeks following the op and after the removal of the supra pubic catheter I had in post op, I did start to notice more sensations of needing to 'go'.
To get to the point of my long winded post. I can now pee normally and very much like the proverbial racehorse. So fingers crossed for you that it works out as well for yourself. The surgeon did suggest that it might work as one of the urinary sphincters are removed with the prostate, but there were no guarantees .

Thanks for that information its really very reassuring as my op is on 28th May had my pre op last Friday I hope as you say it may improve my retention but the surgeon didn’t think it will however he may be wrong I will keep fingers crossed on that one.
Hope your recovery continues to be positive

 

[Hagstrom]

Not heard of Green laser treatment, I was offered either “Steam” treatment (not too sure exactly what is involved, or TURP, I opted for latter as I was told it had a better chance of resolving my issues, recovery has been slower than expected, had op back end of Jan this year.

Well, I've finally had my Green Laser Prostate treatment, after just over a year's wait. Had a painless spinal block. It took about an hour, an hour in recovery and home 3 hours later. 8 hours in total.
Didn't feel a thing throughout. The only bit that was uncomfortable was the catheter being in for a week, although after the 4th day I began not to notice it. Staff were ALL absolutely brilliant at Airedale Hospital and the only criticism I could muster was the hospital parking.

 

[DMC65]

Thanks for that information its really very reassuring as my op is on 28th May had my pre op last Friday I hope as you say it may improve my retention but the surgeon didn’t think it will however he may be wrong I will keep fingers crossed on that one.
Hope your recovery continues to be positive

Good luck mate. Is it robotic surgery you're getting? If so, I was out the next day the worst thing was the bloating after the gas they inflate you with and constipation. Apart from that it was nothing near as bad as I expected.

 

[The general]

3.2 litres in my bladder.

wow that sounds painfull ,how come it was that much retention before catheter started ? I had 750 mlt retention that was enough !

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[Speve]

Good luck mate. Is it robotic surgery you're getting? If so, I was out the next day the worst thing was the bloating after the gas they inflate you with and constipation. Apart from that it was nothing near as bad as I expected.

Thank you and yes it is the Robotic and they have also said I will need to be in hospital for two nights after originally saying one but I’m not to worried about that really appreciate your input and will be glad to get it over and done with now.

 

[Speve]

wow that sounds painfull ,how come it was that much retention before catheter started ? I had 750 mlt retention that was enough !

My retention is averaging between 600-900 ml and I’m not able to void any more than 200ml. My Gleason score was originally 7 3+4 but changed to 4 + 3 making the cancer a little more aggressive hence the op

 

[sedge]

Most important before any treatment gets going is - get those pelvic floor exercises going cos if you don't need the benefit of em now - you absolutely will post op. Most useful feature of doing them for blokes is that if you're doing it properly, every time you contract those muscles, your willy will raise so if you practice in front of a mirror you can see immediately if you're doing em effectively or not. Us girls have no such help!

 

[DMC65]

wow that sounds painfull ,how come it was that much retention before catheter started ? I had 750 mlt retention that was enough !

I don't think it was related to the cancer. The urology team seemed to think it was with working outdoors and holding on had gradually stretched my bladder. I genuinely didn't know. When they drained it in the hospital and let me leave with the catheter in, I went home and had lost 9lbs

 

[BusyBuilder]

I'm about to agree to getting Abiraterone tablets as well as a hormone injection every 6 months, is anyone else on this ?

In September I go for radiography.

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[carolyn]

I would ask my GP about using Naproxen instead of ibuprofen. My OH was prescribed it because it's less harsh on the stomach etc.
I expect carolyn will comment if she sees this thread.

Sorry I’ve only just seen the reference. You’re right about Naproxen being safer but it can upset the stomach as well but less, so still needs to be taken with omeprazole or similar in us mature folk. The other thing that is equally important is that naproxen is a bit safer for the kidneys than ibuprofen.

Nick takes naproxen but he’s still cautious , I have bought Naproxen in the pharmacy in Spain but it’s a lot more expensive than ibuprofen of course.

 

[The general]

I'm about to agree to getting Abiraterone tablets as well as a hormone injection every 6 months, is anyone else on this ?

In September I go for radiography.

I had tabs and ht injections every 3 months before RT , they shrink /starve the cancer ready for RT ,its works

 

[The general]

I don't think it was related to the cancer.

I had AWR due to treatment of RT

 

[pagey]

I had AWR due to treatment of RT

awr?

 

[The general]

awr?

Acute water retention , as posted i had 750 mlts in bladder that needed catheter for 3wks

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[varaizian]

I don't think it was related to the cancer. The urology team seemed to think it was with working outdoors and holding on had gradually stretched my bladder. I genuinely didn't know. When they drained it in the hospital and let me leave with the catheter in, I went home and had lost 9lbs

That probably explains why the French pee anywhere and any time.

 

[rod_vw]

I had tabs and ht injections every 3 months before RT , they shrink /starve the cancer ready for RT ,its works

It's not only the cancer that it shrinks . From the Macmillan Prostate Cancer Forum I was advised to ask for Tadalafil 5mg to take daily to help prevent atrophy although this was readily prescribed when I asked it was never offered early in the HT treatment, I feel that it should have been!

 

[Nirvanauk]

It's not only the cancer that it shrinks . From the Macmillan Prostate Cancer Forum I was advised to ask for Tadalafil 5mg to take daily to help prevent atrophy although this was readily prescribed when I asked it was never offered early in the HT treatment, I feel that it should have been!

I wish they’d told me about it!

 

[The general]

It's not only the cancer that it shrinks

Correct , use it or lose it

 

[The general]

I wish they’d told me about it!

I remember reading about it ! But unfortunately didnt take action !

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[DMC65]

Checking in on Speve. How did the op go mate?

 

[TheMobileWanderer]

A few here have mentioned self-cathetarization so I thought I'd google it.
Useful stuff.
Eyes are watering just at the thought but, it may help me or others in the future so, here's a link.

Loading…

www.baus.org.uk

 

[Speve]

Checking in on Speve. How did the op go mate?

Hi there DMC65 it has been postponed until 12th June not to far away thanks for asking I have to pschyc myself up again now

 

[Speve]

A few here have mentioned self-cathetarization so I thought I'd google it.
Useful stuff.
Eyes are watering just at the thought but, it may help me or others in the future so, here's a link.

Loading…

www.baus.org.uk

Don’t worry about it to much it’s very easy to do I have been using catheters for nearly two years now and have experimented on different types as you can get free samples from some companies although mine are on prescription.
I have found Teleflex Liquick X-treme catheters are excellent and I have not had any UTIs since using them my GP prescribes them grudgingly as they are a bit more expensive but as I said I don’t need antibiotics for UTIs any more

 

[TheMobileWanderer]

... my GP prescribes them grudgingly as they are a bit more expensive but as I said I don’t need antibiotics for UTIs any more

Are your catheters saving cost to the NHS?!
Surely the cost-savings from not prescribing anti-biotics would be greater than the 'additional' cost of your catheters?

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[Speve]

Are your catheters saving cost to the NHS?!
Surely the cost-savings from not prescribing anti-biotics would be greater than the 'additional' cost of your catheters?

I honestly don’t know but I do know three months of continual UTIs and antibiotics was not a nice experience and by my own research on catheters proving that it’s possible to stay clear of infection persuaded my GP it must be worth doing.
These catheters have a sleeve on then so you don’t actually touch any thing that enters your urethra.

 

[TheMobileWanderer]

I honestly don’t know but I do know three months of continual UTIs and antibiotics was not a nice experience and by my own research on catheters proving that it’s possible to stay clear of infection persuaded my GP it must be worth doing.
These catheters have a sleeve on then so you don’t actually touch any thing that enters your urethra.

Good to know. I was questioning the 'begrudgingness' of the GP. It seems like it's better for the patient too and saving on ABs.

 

[DMC65]

Hi there DMC65 it has been postponed until 12th June not to far away thanks for asking I have to pschyc myself up again now

Same thing happened to me, only a week postponement though. It's a tough one when you're psyched up ready.

 

[Speve]

Same thing happened to me, only a week postponement though. It's a tough one when you're psyched up ready.

Yes it is but I’m ok with having it done as I feel with luck all the cancer will be removed and I can then get on with life

 

[Speve]

Good to know. I was questioning the 'begrudgingness' of the GP. It seems like it's better for the patient too and saving on ABs.

Yes our Gp practice are stretched with to many patients and not enough doctors so are very tight when it comes to spending anything

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