Wessex Bladder Cancer Support
It was on March 11th 2010 That I was called to the Royal Berkshire Hospital, in Reading for an 'IVU plus Ultra Scan' The reason was nothing to do with my bladder. Over the previous two or three years my PSA levels had been increasing and this is often a sign of prostate cancer so it was decided that I needed to have some checks done. However, these checks revealed that I had an abnormality in my bladder and that this would have to take priority over any prostate treatment needed. My wife and I were told that it was almost certain that it was a bladder tumour that had been seen and that I would need to have a flexible cystoscopy as soon as possible. Just six days later I had this check and there it was, above my head on a screen and smiling down at me, a large cancerous tumour!
Surprisingly, this news didn't knock me sideways as you might expect it would. I think the fact that I had seen it on the TV screen helped. It took away much of the fear of the unknown. I felt I knew what I was up against and that helped quite a lot. It also helped tremendously to know that my wife would be there with support and encouragement whatever hapenned.
Seven days later on March 24th, I had a TURBT operation and the 4cm tumour in my bladder was removed. The actual operation was straightforward and had no problem, but it caused me to lose control of my bladder and that certainly was a problem. My urine flow was restricted and I had little control over when my bladder decided to urinate. i.e. I was temporarily incontinent. With the help of the hospital nurses I managed to get back my normal urine flow rate by the end of the afternoon and was discharged the same day, albeit with a catheter inserted into my bladder so that I could control the leakage. It took a further 6 days at home before I managed to regain control of my bladder without the catheter. I am a keen runner and swimmer, but of course, I was unable to do either during this period, and this was one of my major concerns at the time.
The good news arrived first when the surgeon told me that there was no evidence of cancer cells where the tumour had been removed, but the bad news followed when he said I would need another operation to do a thorough inspection of my bladder and to take multiple biopsies. This was done and I had to go through a similar 'bladder recovery' process as before. The biopsies revealed that I had an intermediate risk non-muscle invasive bladder cancer and my feelings again were that it could have been a whole lot worse.
In the second week of April I got my first urine infection which resulted in my having to visit the loo to pass urine at least twice an hour, including through the night. Can you imagine getting up 13/14 times a night! To make things worse, by chance, the antibiotic I was given had no effect at all and had to be changed. This delay resulted in more days of multiple trips to the toilet. The new antibiotic cleared up the infection in 4/5 days and my nightly trips to the loo soon reduced to once or twice. I made a note of the name of the antibiotic that had no effect upon me and secreted it in my mobile phone case so that I could avoid it in the future. In fact I was offered it several times over the next few years and was able to avoid it. It seems this sort of thing is not recorded on personal NHS records.
A further blood test revealed another increse in my PSA count which now stood at a reading of 8.5 but there was a feeling among my medics that this count may have been influenced by the effects of my bladder operation/urine infection so a wait and see approach was recommended. In the meantime I was still passing blood/debris in my urine quite regularly, as I had been doing ever since my TURBT operation.
On May 5th a blood test revealed that my PSA had increased to 13.7 and I was invited back to the hospital so that they could take multiple prostate biopsies and, at the same time, do a thorough inspection of my bladder.This was done on May 11th and on May 26th it was confirmed that I did have protate cancer. I was also told that a number of biopsies had also been taken from my bladder but they had all tested negative. On June 22nd my prostate was removed. The side effects, recovery time and complications with the prostate removal operation were much more severe than the bladder operations (TURBT) that I had undergone but they are not the subject of this story.
However, during my prostate operation the surgeon looked into my bladder and had noticed a red patch under where the bladder tumour had been removed. I thought this a bit odd as there was no mention of a red patch when the bladder biopsies were taken in May, just over a month before. He told me about this as I was coming round after the prostate operation. He said that this may, or may not, be the bladder cancer returning. As I was still a bit groggy following the operation I don't think I really took this in but when I subsequently told my wife we both became very concerned.
During the two months following this news I was having quite a few difficulties with the side effects of my prostate operation and it wasn't until September 14th that I had my first, post op., flexible cystoscopy check of my bladder. Great news, it revealed no abnormalities in the bladder so the red patch observed by the surgeon in June must have been caused either by the TURBT operation in March or, more likely, by the bladder biopsies taken in May still healing at that time. My wife and I went out to a very nice restaurant to celebrate that night!
Between September 2010 and now (September 2017) I have had many problems with my bladder including blood in the urine, urine blockages (One resulting in a trip to A&E in the early hours of the morning), 3 years of self-catheterisation to prevent scar tissue from my operations from blocking the urine flow from the bladder and others. I believe that all of these were caused by my prostate cancer treatment rather than my bladder cancer treatment. During that time I have had about a dozen flexible cystoscopies to check if there was any bladder cancer recurrence and I am happy to say that they were all negative.
The hospital has informed me that if these bladder checks continue to be negative for ten years from the date of the operation then I will no longer need to have them. So my wife and I are looking forward to celebrating on March 24th 2020. Of course, it may be that side effect problems previously experienced as a result of my prostate removal will return some time in the future. However, for the time being these are manageable and my PSA checks continue to be very low. So, my running and swimming schedules now get far fewer interruptions and my times are pretty much back to where they should be, given my 74 years of age! So, all in all, quite a lot to be cheerful about.