Hi everyone, have this op planned for Monday in UK and wondering if it will help me.
I can pee about 50% flow these days and the main reason they want to do it is to get a tissue sample for the Royal Marsden so they can genetically sequence the disease and see if I qualify for any drug trials (no biopsy done prior). But I do worry about urinary incontinence and likely infertility - I'm only 51, no kids yet, and wasn't really planning but still.. seems very final.
My unfortunate current situation is a climbing PSA over 100 (rising 10% month on month since on Xtandi) and what seems like a very limited to response to dual ADT. I have extensive bone mets which showed spreading on recent CT/ MRI (had radiation last week to prevent a T10 sinal cord compression). Never had chemo. Cheltenham General hospital offering only older ADT drugs (cocktail of bicalutamide plus others), or chemo or Radium 223.
Not really sure what direction to go in.. very limited options left it seems with such an aggressive PCa. Very scared about all this, but Royal Marsden keen to take me on as a patient once they get tissue sample.
Thanks all.
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Sriyantra
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TURPs usually don't cause incontinence or impotence. Why aren't they biopsying tumor tissue too? Prostatic tissue can have a different genomic signature than metastases. Docetaxel or Xofigo would be good next steps.
Also.. would the docetaxel have much effect at this point? I know I would have been wise to have it when I started Lupron last Oct but I was very concerned about my detox pathways being blocked and wanted to get the Nutrigenomic DNA test done first to assess this (have had a really hard time with detox-y issues.. liver is very overloaded with mercury and mold toxins I have been told by a couple of practitioners).
No plan for that on NHS I think.. once stage four they mainly use RT for bone pain or spinal cord compression. Had a blast on spine last week for that!
Hi Sryantra, I had a TURP 3 weeks ago. I'm also 51, I was diagnosed with PCa in 2016. My peeing deteriorated over the past 6 months, to a point I could barely pee and I had up to 600mls of urine in my bladder after peeing. I did self-catheterizing for 6 weeks, then I had the operation. After the indwelling catheter was removed, on my third day in hospital, I still couldn't pee, so I went home intending to self-catheterise again. After 4 days of much pain and blood, I ended up back in the hospital, to get a new indwelling catheter. They said I should keep it in for two weeks, to allow the swelling to go down. After that two weeks was over, I went back to hospital for a day stay for a 'trial of void'. Initially I could pee, but within 2 hours I couldn't pee again. I was very frustrated at this point. In the 5 days since that time, my peeing has returned reasonably well. I still do the odd self-catheter if I get too much bladder discomfort, or if I get the urge too often (like every ten minutes) as that's a sure sign I'm getting into chronic retention territory. I hope I get more recovery and better urination function in the coming weeks. My next treatments are likely to be focal radiation to the prostate (first time) followed by Lutetium177 around December/January here in Perth, hopefully on a clinical trial. I qualify as I had chemo last year, which failed to do much and I am now on enzalutamide after being declare castration resistant 6 months ago. Best of luck, Cheers Paul.
Sound# like chemo would be what my doctor would do. As far as a sex life freeze some sperm now if your still able ,but I would wonder if it would be normal with you taking Xtandi. Fight the good fight
Usually one TURP will not cause incontinence. After radiation some men need more than one which can cause incontinence.
Do I understand you correctly, you are going to receive more than one ADT drug at the same time? I sounds like you are being used as a guinea pig. I would question that unless you have a very aggressive cancer.
TURP was best thing that I had done ever. Could piss li a racehorse for 1st time in 40 years. I could use a urinal again.
As for PSA, just follow your and your docs judgment and good luck to you in your battle.
I had TURP about 12 years ago. Excellent result, no complications. If you find a good, experienced surgeon you will be fine. Knock off the blood thinners (NSAIDS, vit E, fish oil) for at least a week prior; they've probably already instructed you on that.
Thanks all for the replies. I had the procedure done almost a week ago and still dealing with a fair amount of blood in urine... is this normal? It varies from light-rusty colour to crimson (still clearish though). They never mentioned the blood thinners. Would food or herbal blood thinners be something to avoid at the moment ? (ie garlic of curcumin) The other day I almost had to go back to the hospital because I was blocked with a clot... drank lots of water and that seemed to resolve the issue. I'm just unsure how the steady flow of blood in my prostate or urethra will get to clot if I'm drinking all this water and having to go to the toilet fairly regularly.
The other issue is retention.. I'm still getting up at night a lot, as I don't empty my bladder. I hope this improves over time.
Your recovery sounds extremely routine. Keep on drinking water As much as you can. Gradually the bleeding will diminish as the tissue heals. Don’t expect the bleeding to cease before 4 weeks at minimum. Good luck. You have to keep the area flushed with water.
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