My Story
In May 2019 I was diagnosed with 2 aggressive but non invasive bladder cancers. I was infrequently getting frank haematuria, visible blood in the urine. Several years before this I was referred to hospital for frank haematuria,I had zero pain. I should have been referred immediately but it took 3 visits before I was referred and I was lucky enough to have private medial insurance through work. The outcome was I had a inguinal hernia ("finger" of my bladder pushing through, my muscle around my groin) and the bleeding was due to an enlarged prostate as it was quite vascular. I had a flexible cystoscopy which confirmed this. I had the hernia repaired and the surgeon mentioned the prostate may bleed from time to time and if that bothered me I could go onto finasteride but there are side effects. As it never bothered me that much maybe a bleed every 2-3 months for 1 day I left it alone my PSA was normal. Bringing us back to May 2019 I had another bout of haematuria but on his occasion it lasted a few days and I ended up with urine retention and a fever. I ended up in A&E in hospital and was admitted with the joy of a catheter and for over one week flushed with saline 24/7. This never relieved my haematuria. I went for CT scans, Xray, ultrasound and I was told there were "no nasties" they could only see a blood clot in the bladder. The surgeon I had decided to put me to surgery for further investigation. It was then discovered behind the blood clot there was a golf ball size tumour and a further tumour at the top of the bladder. I had an emergency TURBT procedure and biopsies taken, at that point my bladder cancers were discovered. After 6 weeks I had a further TURBT procedure and further biopsies which turned out to be clear. I was then put onto BCG treatment (1*6 weeks) which was completely fine for me and went well. as the sites of my cancers were close to where my ureters joined the bladder the surgeon wanted biopsies and check the ureters and I was admitted to have surgery utereoscopy basically a wire up the ureters to check all was okay however this failed as scarring from the previous 2 TURBT and the BCG (as it is supposed to do) prevented access but biopsies of the bladder proved there was no reoccurrence and I was put back onto BCG (1*3 weeks). However, late January I was phoned at work to come into hospital immediately and when I arrived I was given a full examination and asked if I was in pain which I was not. I turned out one of my scans had revealed my kidneys were both swelling (or bilateral hydronephronis as they call it) and urine chemistry (eGFR) was worrying wrong level. It was decided the next day I would get bilateral nephrostomies effectively drains but into both kidneys draining into bags in my back to "save" the kidneys. The procedure was done under local and it quite painless and the radiologist who performed the procedure was able to play Queen in the theatre an so it was not all bad! The thoughts were either scar tissue in the bladder was restricting urine output or cancer in the ureters which they could not 100% discount. I had some dye injected into the nephrostomies which showed severe restrictions in the ureters entering the bladder I also have uterocele which is a birth "defect" where the end of your ureters are more like small swellings that connect directly onto the bladder. This make it more prone to scarring. Following on from the surgical team recommended I have a Robotic Radical Cystoprostatectomy which went very well albeit in the middle of the COVID pandemic late April 2020. I now feel good, I have a stoma, I am free of pelvic cancer. I was 63 when I had the operation. My surgical/nursing team were brilliant, just the best. I used to faint getting blood taken before all this. It has been quite a year I have managed to get through this, hold down a full time job and never really been in pain and sadly my mother passed away the day after I was diagnosed 2019. I am no fitness fanatic but walked 10,000 steps or as near to the target as I could before the surgery and I am now doing the same 3-4 weeks later. I hope people reading this get some hope and relief that there is light at the end of the tunnel and the procedures were not that bad. Also keep an eye of frank haematuria I wish I had been more insistent on checking on this rather than just assuming it was a enlarged prostate as it was masking my real issue.
Kind regards
Hi FoxbatABZ and welcome to the community and our corner of it. That's some story. You have certainly been through it, but good to know you are now doing well. We know that some doctors are more proactive than others when it comes to recognising the signs of bladder cancer. We always encourage people to push for the right tests. I was fortunate to find a really good GP who put me through a rigorous examination on my first visit. Without his intervention, my story would have been quite different. Best wishes.
