Brand new arrival on this forum though my PCa journey has been running for several months.
I've just turned 51 and have had prostate symptoms for decades, diagnosed as chronic prostatitis / enlarged prostate. Diagnosed with PCa in February this year having had further tests due to my Father being diagnosed (at stage 4) last year. PSA as of last October was only 2.5.
Diagnosis by MRI and biopsy was organ-confined, small volume Gleeson 6 (3+3).
Long story short, I ended up opting to have a RARP, choosing the Retzius sparing method, done privately (work medical insurance finally paying off?) at London Bridge so that frozen section histology could be done while I was on the table.
Op itself seems to have gone well, disease was indeed organ confined, though Gleeson score ugraded to 7 (3+4) which I gather is very common, surgical margins considered negative.
Things become a bit less positive at this point. Again, long story shortened, it seems I bled a reasonable amount during surgery, but continued to bleed afterwards. This was not detected at the recovery hospital and I was discharged at the appointed time. After a long and uncomfortable journey home, I went to bed to awaken after less than an hour with a blocked catheter and pain.... big pain. Cue ambulance and local NHS to the rescue. 2 units of blood and 3 nights later I'm back home to try again. Recovery is very slow - I'm flattened - can barely do stairs. 14 days after op it's time to try own plumbing. Supra-pubic catheter turned off and for 10 hours or so, it works. Then stops working..... catheter re-opened, works briefly then blocks and will not clear. A & E again..... They decide I have an infection. Default antibiotic given, bladder/catheter flushed and sent home. Things get sore, then very sore, wee gets very cloudy, antibiotics not working. It's the weekend.... Monday it is confirmed the culture shows infection and I have the wrong antibiotic. Cipro is given and it works. Yay! Friday it's time to try the plumbing again. It works..... and keeps working, though progressively more uncomfortable and wee very murky again. Back to A & E on Saturday afternoon.... luckily there a football match on or something and it's really quiet! See the same excellent Doctor as last time, which is good news as the story is getting long. Suspected continuing infection and Gentamicin IV.... Things mostly clear up, the plumbing keeps working and after a certain amount of negotiation the catheter is finally removed on the Wednesday, 27 days after the op. Big Yay! Only after it's been removed do you realise how much it's been poking the bladder, which is of course rather worse when the catheter is not being used as the bladder expands and contracts.
Meanwhile I've been growing some new blood and am now within sight of the normal zone. I'm also starting to feeling like I might live, which is good.
However, the original theme of bleeding continues. At no point since the operation has my urine been entirely blood-free. Best was towards the end of my time on the catheter when I had finally left "rose" land and moved to "Chardonnay" land. Even "Pinot Grigio" land if I drank enough, though always a return to "Rose" if I moved about much.
However, since returning to my own plumbing, there is blood every time. The amount varies. If I drink alot (>2L) and lie around all day then not so much. If I spend much time standing or sitting upright (and I'm talking minutes, not hours) then I start to get sore and wee gets more discoloured. Typically start of the stream will be murky brown, sometimes with small flakes or lumps, middle clearish and fresher, pinky stuff at the end, especially if I've been "active". I'm also still prone to getting sore if "active", especially at the end of a wee.
Last two urine tests have grown nothing. I'm told that this is all "normal range". A phrase I have come to dislike very much in the last 5 1/2 weeks because on two or three occasions now it has suddenly become "not normal".
Also, as far as I can gather, most are relatively pain and blood-free quite soon after the op. I am now 5 1/2 weeks post op and 2 1/2 weeks on my own plumbing...... Also, no noticeable improvement in the discomfort/blood situation in the last 10 days. Indeed, the blood situation is probably a bit worse - most likely because I'm a bit more active than I was.
I realise that although it doesn't look great I'm probably not leaking very much blood. However, I'm still taking it very easy indeed and time is passing. My employer is getting restive, my wife is getting fed up. At present it seems like if I were to be more active then I would bleed more, and possibly to the extent where clots might cause problems. I really don't want to go there!
Really curious to know what your experiences are regarding bleeding/haematuria over the longer term are?