Hi, I collected my wife (66 yrs) from hospital today after a 7 year long episode with small cell endocrinology carcinoma around the bladder. It was always difficult to get any positive views at the time and I thought to set down what has happened may be of some help to anyone starting on this unpleasant journey!
My wife had a problem with urine retention back in 2009/10. She consulted a specialist who recommended carrying out an extension of the uretha to achieve better drainage. During that procedure he took some samples that were diagnosed with stage 0 cancer and recommended BCG infusions to sort it out. The first BCG led to a massive urinary track infection and there were no more infusions! We tried self-catheterisation each evening but eventually started seeing blood and stopped.
A few weeks later she felt really unwell and was admitted to hospital with Creatinine at 750 in her blood. A scan showed no problems inside the bladder but a very great thickening of the bladder wall. She had external drains to the kidneys put in and the kidney function slowly improved enough for the urologist to carry out a bladder inspection. Deep needle biopsies through the bladder wall revealed an extensive (8cm) tumor around the bladder that had extended up to close off the ureters - hence the loss of kidney function as the body had been storing excess urine - no wonder she felt bloated. The cancer was identified as a small cell neuroendocrine carcinoma. This type of cancer is most frequently found in the lungs of male smokers.My wife has never smoked!
We were told the good news that this cancer could sometimes be treated with combined radiology and chemotherapy. A team comprising a urologist, a radiation oncologist and a chemotherapy oncologist was assembled and started treating her. The prognosis was not good but we pushed through 6 weeks of radiation (everyday but week ends) 6 bouts of chemo separated by 3 weeks. About half way through, the tumor had started to shrink. We had some complications but we managed. By the first week in March, there was no trace of the tumor on the scans. It had already been established that there was no sign of the cancer elsewhere. The kidney drains stayed in until June 2011. We were told that this was of course fantastic but severely warned that the cancer was likely to return. We were encouraged to empty our bucked list! One Doctor did say that "It does not have to come back". We took great solace from his words!
A complication was that the radiation had damaged the ureters that needed stents in to keep working. We initially had them changed every 6 months then it was down to every 4 months. A quick procedure but still a general anesthetic each time. We spent a lot of money on incontintence pants as well! Never the less - we travelled widely - flying around the world and seeing many things.
After 4 years it seemed that the cancer had truly been beaten and was not returning. No more scans....
A few weeks back, the operation to change the stents could not be carried out and we had to consider a urinary bypass and external stoma. The operation was undertaken with no problems and my wife is now looking forward to seeing more of our grandchildren. No more pants - no more stent changes - no more scans - hopefully, no more doctors!
Sometimes there is good news and I thank the Lord that we have been lucky. I just felt that this story could be of help during the dark times.