I'm not sure whether I should be posting here yet as I am as yet undiagnosed, but I am very worried and cannot seem to get answers or clarification elsewhere, just lots of conflicting opinions and hopelessness.
on the evening of January 6th I went to the loo as normal and urinated blood, this went on in varying degrees for abut 5 hours so I went to A&E who took an urine sample and gave me antibiotics. The antibiotics seemed to do the trick, bleeding and pain during urinating stopped within a day or so although I still felt uncomfortable in the bladder area. Anyway the urine sample was inconclusive so they booked me in under the two week haematuria clinic for an ultrasound, cytology and cystoscopy with a CT Urogram to follow. Doctor told me not to worry it is all common procedure now for the presentation of Frank Haematuria in men, that didn't stop me worrying however.
So a week after the "infection" I have the ultrasound, which was all clear and the Cystoscopy which showed a lot of inflammation, pretty much everywhere. The Urologist said it looks like inflammation consistent with infection and perhaps the Cystoscopy was done too early. The Cytology and blood tests all came back normal. About 4 days after this I had a second episode of blood in my urine, Doc said it is common after the procedure if you have an infection (He also said that not all infections are found in urinalysis and as my symptoms responded to antibiotics that is probably what it is)), again this was cleared up by antibiotics, and after a change of antibiotics to Cipro all my symptoms cleared up pretty much.
So two weeks after that I have the CT Urogram, everything is fine except "a very small filling defect less than 1cm" in the right renal pelvis. The urologist again says not to worry it is probably just a "variant of normal", either a prominent papilla or blood vessel which is normal, I asked about cancer and he says its very unlikely, this was echoed by the consultant and my GP. He wanted to do another Cystoscopy and Ureteroscopy under GA to have a look and characterise the defect. This I had done a week ago today (17 Feb). Unfortunately the consultant couldn't see right into my kidney as my ureter was too narrow for the instruments, he also said I was bleeding very easily (my fault I think as I take a garlic supplement and forgot to say anything) , he said that what he did see was all fine and he fitted a JJ Stent to widen the ureter in order to repeat the procedure in 4 weeks. (17 March)
However, he also found two red patches in my bladder, he has taken biopsies of these (no results as yet) and another cytology. I asked him whether it was cancer and again he said its unlikely and he is not unduly worried, this was echoed by both nurses I asked, he mentioned something about a virus that can cause this. (Could it just be the remnants of the infection?)...
I am extremely scared that I have Primary CIS carcinoma in situ of the Bladder? I did see on his notes that he had written several things with question marks next to them with CIS being one of them, I asked him straight out whether they suspected cancer and he said, "its very unlikely", as did a second Consultant earlier.
Could this be something innocuous as the consultants are saying, or should I just accept that I have CIS as this appears to what people are telling me, that red patches are almost always CIS, and from what I have read CIS is virtually a death sentence...
I am a 44 year old chap, quit smoking over 12 years ago, fairly healthy lifestyle and I am scared, very scared.
Sorry if this isn't the right place for this, I appreciate my worries are probably very slight compared to most the people here, I just don't know where else to turn as no-one seems to want to tell me anything.
Great news Jay. It has been a worrying time for you lately, so hopefully now you can relax and get back on track with your life.
Hi and welcome to the group. BCG stands for Bacillus Calmette-Guerin. It is a mild version of the vaccine used to treat Tuberculosis. It is an immunotherapy treatment inserted in the bladder to treat and help prevent recurrences. CIS stands for Carcinoma in Situ, a form of bladder cancer. Rather than being tumour like, it appears more like a rash on the bladder lining.
I noticed your other post in the expert section and it appears your recent cystoscopy identified some red patches. These patches can be caused by a number of things including inflammation, but be aware that if it does turn out to be BC, then BC can be treated effectively and there are many of us here to tell the tale. You say you are going in for a biopsy. This is similar to your cystoscopy, but done under general anaesthetic. A fairly straightforward procedure and you will have a few weeks wait for results. I hope I have not overloaded you with too much info as I am sure this is already a worrying time for you and we understand. As I say, there are many of us here with a wide variety of experiences and may be able to answer any other questions you may have.Best wishes
Hi . There are different forms of bladder cancer and CIS is one of them. Very early days for you yet and things can't be confirmed until your biopsy results. Many of us carry on with regular lives following treatment. I finished treatment over 5 years ago and fortunately have not had any recurrences. We do get checked regularly for many years. I suspect you may have done some googling and most of us are guilty of that. Be aware that there is a lot of out of date and misinformation out there. Best wishes.
