PAE and UROLIFT

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Anyone in the UK had either PAE or UROLFT?

Where did you get these procedures done?

What were the results?

Due to see my doctor shortly and don't want to be in the dark about what's available.

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  • Posted

    Graham

    Google Uk ROPE PAE, there are medical  trials for PAE currently ongoing.

    I am having mine at Oxford under a DR Tapping on 9th Feb and will be posting results here,

    kind regards

    Jeremy

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  • Posted

    Hi Graham

    I had my PAE carried out at the Freeman hospital in Newcastle upon Tyne two months ago. The only other centre in the UK as far as I know is at the Southampton university hospital.

     I am very happy with the results. My maximum urine output has increased from about 120ml to about 360ml in the course of the last two months. My bladder empties completely and I get a full night's uninterrupted sleep. As a bonus my sex life and energy levels have improved too. I am still awaiting a post procedure MRI scan and a chat with the urology consultant which is scheduled for next week.

    I don't know anything about urolift but would definitely recommend PAE compared with some of the other more brutal procedures, unless you want to put your sex life at risk.

    Good luck with your treatment

    Peter

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    • Posted

      Hi Peter

      Thats very encouraging, I am having mine done at Oxford on 9th Feb

      My current max urine output is 200ml, and I am getting up in the night.

      As a matter of interest did they take your PSA readings before and after?

      Also was it part of the UK ROPE PAE trial?

      thanks

      Jeremy

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    • Posted

      The Freeman are always out in front when it comes to new procedures. I had my GL PVP there in 2005 as one of their early patients.
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    • Posted

      Hi Jeremy

      Yes it is part of the ROPE PAE trial and am completing regular questionnaires to help with this research.

      My PSA last July was rather high at 8,9 and so had a biopsy in august 2015 which luckily showed no evidence of cancer, but that probably delayed my PAE procdure which eventually took place on 2nd dec 2015.

      I'm seeing the urology consultant next week and also having an MRI to confirm what I think has been a successful outcome in my case and will no doubt have another blood sample taken for a PSA measurement. I forgot that Oxford is another centre for PAE procedures.

      I also volunteered for another research program to find better blood tests than the PSA test which is rather unreliable and hopefully with better blood tests be able to avoid the need for biopsies.

      Good luck for 9th Feb

      Peter

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    • Posted

      Thanks Peter, I am now regretting having mine taken (by my own request)

      as it came in a 6, but I have already had the MRI scan a month ago in preparation for the PAE. The GP at my local surgery was recommending a biopsy but I am not agreeing to this as I dont want to put off the PAE at this late stage. What was your PSA reading then going  in to the PAE do you know?

      kind regards

      Jeremy

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    • Posted

      HI Jeremy

      I regret having had the biopsy. It took months for the semen to return to somewhere near the pre-biopsy colour and even now 5 months after the biopsy still looks rather watery.

      I also had a prostate biopsy done about 12 years ago after my PSA count came in at 6 , same as yours. Strangely, after that biopsy the PSA dropped to about 3 and the semen colour recovered more quickly - after about 2 months.

      This time I didn't have a post biopsy, pre-PAE, PSA count done but if the previous experience was anything to go by it probably would have significantly reduced.

       

      I shall no doubt shortly have another PSA reading done and will be surprised if it isn't a lot lower with the prostate having shrunk as well.

      Pre PAE I was only give a CT scan but next week I am to have an MRI scan to see what things look like now.

      However I am very happy with my improvement since the PAE procedure. I will post more information as soon as it becomes available.

      Best regards

      Peter

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    • Posted

      I had a problem with dark semen after my first  biopsy. After about six weeks I went back to see the Uro who said it was 'old blood'

      After the next one ( done by an a female Aussie butcher) I was kept overnight as I started to hemorrhage from my back passage.

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    • Posted

      THanks so much for the feedback.

      It really is time that the PSA test was replaced with something more reliable and accurate. Can you tell me more about the research you have volunteered for to find al alternative to the PSA test?

      I am def not going  to have a biopsy at this stage. MY PAE is in a week

      and I will discuss with the Consultants when I am there,

      Will post with updates.

       

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    • Posted

      MMh I bet you loved that!

      More evidence of the randomness of the whole PC diagnostic procedures!

      And very real downside! 

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    • Posted

      The research to find a better blood test for PC instead of the usual unreliable PSA test is a long ongoing program. Volunteers who are either clear of PC or are somewhere along the Gleeson scale for PC are simply asked to provide a blood sample. There is no feedback and the names of the volunteers are not included on the database.
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    • Posted

      Hello Peter and others.

      I had my procedure at Oxford last Tuesday  and it was a breeze.

      Less uncomfortable than having my teeth scaled and polished and zero complications or symptoms of any sort!

      No blood in urine, just a slight increase in frequency and sense of not emptying totally after two days, but that is back to "normal" now.

      I was given Voltarol Suppositories to reduce any swelling and these work very well indeed. They said my prostate was 82cc in volume and they injected 8 ml of pva particles into each artery right and left of prostate, and said they were very pleased with the outcome.

      It is now one week and 3 days since the op but to be honest  I dont feel any noticeable improvement yet. How long did it take you to see the first improvements? One thing that did happen was that my Variocele in the scrotum all but disappeared in 2 days! and My semi-chronic back pain seems to have gone. I used to have  a recurring incidence of lower pelvic pain which seemed to aggravate my back pain, but now that seems to have gone!"!" We will see, but I have heard it can take 3 months for the prostate to shrink after the PAE. Has anyone else reading this any personal experience of timescales?

       

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    • Posted

      Hi Jeremy

      Pleased your procedure went well. In my case my maximum urine output pre PAE was about 120ml and my prostate size was about 160ml in volume and I was retaining around 220ml urine  in my bladder and having to get up several times at night.

      Post PAE procedure It took about 4 weeks to notice a significant improvement. No longer needed to get up during the night and max urine output had doubled to about 250ml and there was no more dribbling and leakage. However flow rate didn't seem any stronger than pre procedure. At this time also completed my first post procedure ROPE questionnaire.

      Two months after the procedure max urine output has increased to 390ml and suggest that my bladder is now emptying completely. Flow rate however is still not very strong.

      Last week I also had an  MRI scan to see what it now all looks like, but the appointment with the urologist consultant is not until April so I don't have any numbers yet.

      A big plus is that my sex life has significantly improved and so have my day time energy levels now that I sleep well  at night.. Friends have also noticed that I am looking better, not worn out as I used to look and obviously feeling contentment with my improved sex life.

      I guess that time scales and results will vary from patient to patient.

      When I have some more numbers and had the discussion with my urologist in April then will post again.

      All the best

      Peter

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