Choice difficulty

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I've had retention problems for some time, without it seeming to be a problem: about 500 - 600mL. But about a year ago my blood pressure started rising, eventually to alarming levels (200+/105). Then my remaining kidney started showing signs of reduced functioning - creatinine levels up, eGFR down (eventually 25). Various specialists investigated and put me on various blood pressure pills, which worked to some extent, with unpleasant side effects. Eventually I had an ultrasound check of my abdomen, which showed dilated ureter with what seemed to be an obstruction. So a cystonephroscopy was done (a visual check, via the urethra, into the bladder and ureter).

They found (a) some low gade baldder cancer; (b) no cancer in the ureter, just distension; (c) high urine retention (1.2L). They put a catheter in for me to drain regularly and thus relieve the back-wash into the ureter (which may have been causing the poor kidney function and increased blood pressure); this to remain until I had a TURP in several week's time.

Subsequently, my kidney function improved and my blood pressure fell (I've halved my hypertension medication too). This shows that the earlier consultations with the hypertension people failed to discuss or test for this possible cause (I'd been put on an increasing dosage and wider variation of pills instead). and thus didn't uncover this cause and more productive way.

Next, I found the poor sleep and lack of sex with the catheter such that I didn't want to wait months with it in. Fortunately, I can afford to go private. This didn't produce the rapid response from the local team that I hoped for - failure of communication and missed clinics. I started a hunt for alternatives, meanwhile chiving up the locals (which eventually got a response, but after I'd found someone else to do it quicker and cheaper).

I got a bewildering and conflicting set of recommendations from experienced urologists - TURP, Green Light Laser, HoLEP, UroLift. All seemingly sincere and stating that their preferred option was the best. Even contradictions: one urologist said as I'd had bladder cancer, then a couldn't have UroLift; an hour later another urologist contradicted that but then thought surgical TURP was the best even though he did HoLEP and UroLift. Etc.

In parallel with all this, I was attempting to find a hospital that has a short waiting time for this op on the NHS. Theoretically, and English patient can choose to go to any hospital. But try finding a list of hospital waiting times for this op (or any other for that matter) as I did, and I found nothing. I failed after three days searching the web, and phoning various organisations (NHS Choices, CCG, BICS, PALS, hospitals direct): either nothing or having the same waiting times for the one or two hospitals I talked to directly.

My conclusion from this is that there may not be much difference in outcome on average from any of the alternatives, and the expertese and experience of the urologist along with the patient's individual situation may have more of a bearing on the outcome than any one of the four alternatives.

So I feel now relaxed that I'm having my op done next Tuesday, by HoLEP, with a surgeon who says he's been doing two a week.

I'll report back afterwards.

 

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32 Replies

  • Posted

    Good luck with the operation.

    All the urologists disagree and are usually pretty adament in their preferences.

    Practice nurse told me that sex is possible with a catheter.....I said don't tell me!! as I only had it for two weeks. Actualy I did look it up and it can be done.

     

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    • Posted

      Thanks Derek. I did try sex once, but the results were not nice - blood, etc. Not again. So I want this darned catheter out asap
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    • Posted

      Wearing one for two weeks was a hassle. One leaked when I was out after that I carried a spare rair of trousers just in case.

      You deserve a good outcome for your persistance against a sea of NHS troubles. Some years ago a Guy on a prostate NG was posting during the procedure.

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    • Posted

      OMG! Sex with a cathater still in? I cant imagine that. I woke up with an erection a few times while that tube was in. ...freaked me out!
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  • Posted

    Hi Ian,

    Best of luck. I think the holep was a good choice as they can evaluate the removed tissue for cancer, while the GL I had just vaporizes everything so there's nothing left to evaluate. I agree with your evaluation that all the procedures are very similar (except for being able to evaluate the removed tissue), they all just cut or burn a tunnel through the prostate, to allow the bladder to empty without the previous obstruction caused by the enlarged prostate.   Please keep us posted. Don't be discouraged if you take longer than expected to recuperate. Some men are good in 10 days, others like myself experience 8 to 9 weeks of bleeding, urgency, frequency and spasms. I think it's the luck of the draw.

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    • Posted

      When I had thulium laser surgery last year it was not all vaporised and he had masses of material to send to histology. 
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    • Posted

      I think only the Green Light laser (at least the 180 watt XPS that I had) is the only laser that vaporises only, so leaves nothing behind to analyze. I think all the other lasers cut and section or grind the tissue and wash it into the bladder where it is washed out at the end of the procedure.
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  • Posted

    Thanks guys for all that input. You've all been a great help in guiding me through this and letting me know what I may be letting myself in for.

    Yep, I'll report back.

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    • Posted

      Are you expecting to be home the same day? Most GL laser patients are. Friends who travelled to London for it spent the night in a hotel and returned to the hospital in the morning to have their catheters removed. I was kept overnight as I had it done in late afternoon. They took the catheter out the next morning but I could not pass much and had retention. If I had lived locally they would have let me go home but as I had to travel to Edinburgh from Newcastle they did not want me out of reach of promt attention so I had to stay another night until I could void without retention.

      Rather similar with the Thulium laser done locally in Sussex last year. As I was still passing blood they sent me home on the second morning with a catheter in.

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    • Posted

      I've been told to expect to stay in for two nights. The op is in the evening (18:00). I did keep saying 'maybe one night?', but they seemed doubtful.
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  • Posted

    Hello ianC,

    Did you have th HoLEP procedure? I am hoping it went well. I just had the Urolift 2 weeks ago and so far I am doing better but still not off the Flomax. I am curious about your procedure. Which doctor? Was it successful? Are you Happy with the results? Thanks Phil

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    • Posted

      Hi Phil,

      Yes, I did have the HoLEP TURP. In terms of urine flow I'm pretty good in the day - I can comfortably go 5 hours if I need to; 4 is general.

      Oddly, I still have to get up at least once, and lately twice, a night. I even think I was up 3 times last night (I'm so groggy then I'm not sure - I do it on auto-pilot).

      I stopped tamsulosin a week or two after the op (last August) and haven't needed it since.

      The surgeon was Ravi. He said he'd done lots, so I trusted him - but didn't check (I think I should have done).

      The op seems successful. But I still have micro-haematuria and leukocytes, which Ravi was dismissive about when I contacted him a month ago. He'd told me they would finish in 6 - 8 weeks; not true. But someone here (Derek?) told me he'd had such problems for 12 months before they cleared up - so I'm hoping that'll be true for me. There's no issue with pain - these sypmtoms only appear on the dipstick reagant tests I do daily.  Apart from that, I am failry happy with the result.

      I've no problem with ED, other than my dick now has a bend to the right - not really a problem. Orgasms are OK.

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    • Posted

      Micro-hematuria and leukocytes.... Wasn't me Sir:-)

      Did he say why your dick is now bent? The head of my penis was mildly painful for a month or so after my last procedure.

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    • Posted

      Hi Derek.

      No, I didn't mention that. I just assumed I was lucky to get away with just that (it's more a 'lean to the right' and not really a problem - but maybe I will take it up with him; he's been a bit too dismissive for what I think is something he's responsible for). I know that some have worse effects afterwards.

      I don't recall any pain afterwards.

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    • Posted

      No I hadn't. But thanks for the idea.

      From what I read on Wikipedia, that may explain it - except it only happened after the TURP, so I suspect it's more to do with that.

      I doubt there's much can be done about it; and it's not troubling me - I'll leave well alone.

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    • Posted

      IanC,

      Everyone heals differently at different rates. I had a guy online tell me he trurned the corner at 6 weeks. I was disaapointed when I didn't. It took me 9 weeks to stop peeing visible blood daily and getting verey sharp spasms when I finished peeing after my GL laser.. I have my own 10 parameter reagent urine test strips, and I had micro hematuria and leukocytes for many months. Neither my GP or my uro were concerned.

      Good luck,

      Bob

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    • Posted

      Thanks for that reassurance Bob. As I've no pain or any other symptoms, I'll just wait it healing up as and when.
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    • Posted

      I really do not understand a long period of bleeding or pain like that after GL surgery. When I had it all signs of blood had gone in less than ten days and from day three or four it was just a spurt of blood at the start of urination or a small blood clot in all other ways life was pain free and back to normal on day three.

      The next time after Thulium laser surgery I was sent home with a catheter in as I was still passing blood on day two. That slowed my recovery and I had an infection due to the catheter. There was blood in my urine for the whole two weeks the catheter was in but the moment it was removed my urine was clear and I had no retention .

      The urology nurse said that most post surgery blood comes from the urethra due to the trauma it has suffered from instruments as it soaks up blood like a sponge. Each time I was warned that clots, scabs  and bleeding can occur up to six months later.

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    • Posted

      For me it is microhaematuria - only known about 'cos of the reagent dipstick, which is what Bob mentioned. No visible blood, except too occasionally deeper red/orange at the start of peeing.
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    • Posted

      Can there be a connection with your your earlier health problems?
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    • Posted

      Maybe I just bleed easier and heal slower. I know I came across posts by many who bled for 6 to 8 weeks after. I don't take blood thinners, But I have thick red blood. A year before the GL I had the TUMT microwave procedure which was supposed to be minimally invasive. I bled and had sharp pains peeing for 6 weeks after that. I had a procedure to stop hematuria, resection the bladder neck and remove stones 16 m0nths ago, 18 months after the GL. I don't know what started the gross hematuria. I don't recall what the recovery was like. I'm 2 weeks out of surgery (a turp this time) to stop another gross hematuria. I've had no real pain, and the contents of the cath bag ranges from burgundy wine to pink lemonade. I don't know what caused this second spontaneous gross heamaturia either. My uro said my prostate was bleeding and he removed another 70g. with the turp. Hopefully the pathology reports will be good.

      I hope to get the cath out on Tuesday, and hope I able to pee on my own and am continent. Based on what my uro has told me, he has now removed a total of 140g of prostate including 25g. of a 40g. median lobe. Working backwards and using info from my measurements before the GL, I think my original prostate size was 180g. or so. It could be this enormous prostate was part of the slow recovery and the 2 hematuria incidents

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    • Posted

      I presume you're alluding to my late, and unlamented, bladder cancer. Whilst that's always a possibility, it looks unlikely. I do a monthly blood test for a molecular marker for that, and it's been negative for over two years now. It may well return, but the test I use, a new one, seems quite good - it correctly picked up earlier returns.

      I do, also, have a impaired kidney. But I doubt it's that. However, I'm going to raise it with a kidney specialist on Thursday. 

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    • Posted

      That was some prostate. What was removed from mine is a puzzle.

       It was 130 gm, when I asked after the operation how much he had removed he said 'Lots'  Now two years later I had another DRE and was told that it is now 50gms.   When I later had a cystoscopy I commented to the Uro doing that it must have grown a lot in two years. He looked at the operation notes and said hat the surgeon had removed 36 gms. I queried how come 130 – 36 and it is now 50? He said that 36 was the tissue retrieved and sent for analysis but that a lot is vaporised by the laser. So I don't know if it is growing again or not. He regarded 50gms as not all that big.

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    • Posted

      Do you dp the monthly test yourself? I know someone with bladder cancer that keeps returning but his always seems to picked up by the hospital.
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    • Posted

      Hi Derek,

      My uro said it was the biggest he has ever seen. From what I read the prostate grows at a rate of 5% a year, some faster. So if you are at 50g. now, working backward maybe you were at 40g. after your procedure, meaning maybe he took out 90g. altogether. 

      The measuring of the prostate from scans or sonograms is a formula based on l x w x h x 1/2. I think it works well if the prostate is egg shaped but if it looks like a gingerbread man with an enormous median lobe (my median lobe was 40g. on its own) it gave me results like 240g. even though my uro said it was probably around 130g. to start. But now after removing 140g. in 2 procedures and 25g. of a 40g. median lobe, he says I have a 40g. prostate.

      I see my uro today. Hopefully to remove the cath that's been in for .14 days. I hope I can pee on my own, and hope the pathology reports are good.

      My uro says the prostate never stops growing. After 3 procedures he agreed to do an open prostatectomy next time. I'm 68 so I'd rather there was a next time.

      Bob

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    • Posted

      Someone on here described his prostate as growing like a weed.

      Growth, my prostate was 35gms in 1995. By 2005 when I had PVP it was 75gms. From then until 2013 it reached 130gms.

      When the last surgeon offered me Avodart to avoid a future procedure I said at my age. He glanced at my notes (79) and said perhaps not but now it seems a posssibility.

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    • Posted

      Hi Derek,

      Using a compount interest calculator (and assuming the quantities are more or less correct), your prostate grew at about 7.6% between '95 and '05; and 6.9% a year from '05 to '13.

      Bob

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    • Posted

      We will need to have a survey to see how average that is compared to others.
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    • Posted

      Hi Derek,

      Statistics have very little bearing on the individual. The only number that's relevant to you is yours.

      Had the cath taken out yesterday. Thank God and the Saints my pathology report showed no malignancy although it mentioned "multinucleated giant cell reaction" which I guess is why I grow back so fast. Next procedure for me (if and when) is an open prostatectomy.

      Having had 2 GL laser treatments and a turp all in less than 3 years, I have to say the turp recovery is much easier and faster. I'm mostly voiding yellow pee and have had no real pain, and no urgency at all, now 2 weeks after the turp.So if I had to vote I'd say the turp is better than the GL.

      One odd thing is I have had to re-learn how to pee. I line up in a urinal and think about peeing and it seems to fall out in a few quick waves - about 250cc or so in less than 10 sec.

      I am leaking and have to wear depends 24x7. Although I am getting up 7 or 8 times a night to void over 2 liters, I am still leaking in my diaper while I sleep. During the day I void less than a liter, but that day-night disparity was a problem I was trying to get diagnosed before the hematuria derailed me.

      Best Regards,

      Bob

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