We are very grateful to everyone who has shared their story with us on this website. We know that many people find reading the story of other patients very helpful when trying to make sense of their diagnosis or cancer journey. We also know that these stories can be very powerful in helping to raise awareness of bladder cancer and highlight the urgent need for new treatments, research and support for those with bladdercancer.
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My Story, by Don, aged 70.
It is a truth universally acknowledged (or it should be!) that if you wee blood you should make a bee-line for your doctor.
This happened to me, but I didn't - make a bee-line that is. I was on holiday away from home. I didn't want to spoil my wife's well-deserved holiday, and I didn't really fancy talking to complete strangers about it. After all, it might just go away. It did, but not for 3 or 4 days, so I realised I needed to see my doc as soon as I got back home.
She explained the likely causes and sent me to the local hospital. That was my first cystoscopy, and actually the specialist said there was nothing to be seen. Not an exact science then! The problem recurred after a few months so I had another cystoscopy and a different specialist nurse (with better eye-sight?) found widespread cancer in my bladder. It was quickly diagnosed as aggressive, but (very fortunately) it was limited to the bladder lining and seemed not to have spread anywhere else.
The first treatment I had was immunotherapy. Basically you are given a bunch of nasty-stuff (excuse my technical terminology) in an attempt to stimulate the immune system to such an extent that it kills off the cancer. I think the course was 6 treatments once a week. Everyone is different and it obviously works for some people, but I called a halt after 5 weeks because I did not get on with it at all. And it seemed to be having no impact at all on the cancer which was still spreading. So what next?
My brilliant consultant was very straight-talking, and said simply ‘This is life-threatening, but I think we can solve the problem. We'll take out your bladder and either make you a new one or give you a stoma. Which do you want?' That was a no-brainer! Nobody could ask for a better solution than a new bladder in these circumstances! Not everyone has this choice for medical reasons, but I was lucky - I was suitable to have a neo-bladder. I had a fantastic urology team and I was completely confident in their hands. I was sure they would do everything possible to help me. I went into hospital for my operation a few days after my 65th birthday.
When I woke up in ICU it was one of the most wonderful feelings imaginable. I was absolutely astonished when I was told that my two surgeons and their team had worked on me for a full eight hours! And very relieved when they told me everything had gone perfectly - even though they had only done a handful of similar operations before! And that's also when they told me they had a ‘Special Offer' that week, so I got three operations for the price of one! Operation 1 was removing my cancerous bladder (confirming no spread), Operation 2 was cutting a chunk several inches long from my bowel (and sewing that up, of course) to make a neo-bladder. And the freebie Operation 3 was to remove my prostate! The latter had cancer of its own, although a not so aggressive kind, but it was better to be safe than sorry.
As I recovered it was the loss of my prostate that was my biggest concern. I soon learned the art of weeing with the required ‘muscle-squeezing' process, and controlling leaks (because the bladder removal weakened the sphincter that holds your wee in the bladder). But prostate loss meant a big change to my love life - a bit closer to my heart than the question of weeing! But that was not the end of the world.
I am only still here because I went to my doctor when I saw blood in my urine. My cancer was caught before it spread outside my bladder - as it would have done quite quickly if left unchecked. Even the most brilliant medical experts - like my team - cannot work miracles. So ‘If you see red, see the doc' is my message. It really should be universally understood.
It's 6 years since my op and I am all clear. I am now a ‘cancer-survivor'.