Just a quick note about my experience. My new neo is three months old now and I too am quite active with hiking. I do find after a good trek in the hills that the mucus that forms in the urine is much more dense and on occasion darker with the odd red speck here or there. This I put down to the body producing more moisture than it can take in - especially when one steps up a gear or two. Even drinking plenty of water will still reveal the above issue. For me things return back to normal when I go back to regular activity. Too much coffee and not enough water can also have an influence on this issue for me too.
Yes I have had that experience too a couple of months after the surgery then at about 8 months and not since. I had the retests you describe and nothing was found to indicate a recurrent malignancy. A urine test did show up a bowel infection in the neo bladder which was treated with antibiotics. I haven't worried about it since. exactly as you describe though. Kind of like tiny pin spots of old blood and flecks running through the mucus. I guess ,with the pockets in there, it's also possible to have residual debris hanging around in there for some time after surgery also.
Yep, been there, shared that same experience. It's nerve-wracking, but it is what it is.
As another T1G3+CIS alumni (2 1/2 years ago, neobladder), I've also had a couple of episodes just like you describe (some bloody mucus). First time was about 6 months after surgery and then once again about 1 1/2 years after surgery.
I'm also physically active (tennis, weights...). Had all the same tests, all seemed ok. Dr. Stein told me these symptoms were not necessarily indicative of recurrence. One of my episodes occured while I was straining a bit 'on the pot', so now I'm sure to drink lots of water and eat my fruits and veggies, no problems since.
He did say that if there was any bright red blood, that that might be indicative of urethral recurrence. fyi
Dx 7/04, CIS + T1G3, Age 50
Cystectomy 8/05 USC/Norris
So far, so good (kow)
Sorry to hear you so distressed, however - I would be a basket case in that situation. I got my neobladder in March 2007 and I have no visible blood in my urine. Please note I have not been mountain biking either! I do get pretty active but not quite like you. Please keep us posted and youre in my prayers, Holly
HI. I am a 36 yo man, T1-G3 with CIS/LVI who underwent RC and ileal neobladder formation just about 1 year ago (1 year old on 6th November). On the whole things have been okay - early daytime continence and only 1 or 2 UTI's. I have been undergoing regular surveillance and have just had a set of tests (urine cytology, CT-urogram/pelvis/abdomen, CXR) which were all negative. Just afterwards I noticed a few specks of blood in the mucus, on one occassion. Then 3 weeks later, last week, I noticed one episode of more red blood (only in the mucus). Repeat cytology was negative for malignant cells, urine microscopy was positive for a low level of pseudomonas (again, which I had before), but without any other infection symptoms. I had a cystoscopy, which showed normal urethra and neobladder. I have had no more episodes of red blood, but have had a further episode today of seeing 3 specks of dark blood in the mucus.
Does anybody else who has had a neobladder see this kind of thing, just in the mucus?
I have spent a long time searching for answers on the web but can't find anything. My surgeon, feels that this is probably related to my high level of activity (I spent 2 hours mountain biking today with my marathon running buddy!!). Obviously I am quite worried, in particular about the possibility of ureteral recurrence.