It's been two years since I've looked in on a forum like this, and two years since my cystectomy was due to take place. I hope that the decisions I took can be helpful advice for readers here. Such advice was certainly lacking two years ago when maximal pressure was applied to me by my doctors.
I am 58. My problems began in 2012 when I was 48, when I went to the doctor because of some non specific but quite intense stomach aches - I thought it was appendecitis. I had a scan, and they couldn't see anything but I was advised to have my bladder checked. They could see I had a bulge there (a divertic...m?), and this was corrected by an operation. But after the operation, bad news- the doctor said there were superficial polyps - p3Ta (Is that right? - it's been while). He would need a second go to remove these.
After this day-surgery, I went for a follow-up TURB and lo! The polyps were back. T1 this time. Then I had BCG - failed, multiple polyps after that. I had mytomycin, failed again. Polyps back. Then the doctor started to recommend cystectomy. That was about 2014. I didn't fancy that, and started going back for a TURB every six months. Each time, same result - polyps. How much longer can I put this off, I asked the doctor. Eventually your bladder will become a solid sided unresponsive slab, he said. I asked for a second opinion as a last result to stave off the inevitable.
I was sent to a university hospital, where I was interviewed by a young doctor. He looked at my records and said, cystectomy is inevitable, I should never have been allowed to go on this long without it (2016). I was lucky - he was the top man in robotic cysectomy. Just book in! Should I have my doctor at my home town do it ? No! that's the old butcher's way, with the scalpel. People still die of that! Do it on the machine. I went back to my hospital where the doctor was downcast. He had expected my appointment to be with an older doctor there. This new one. On that machine? They hang you upside down for six hours!No! Let me do it the time honoured way!. So, I had a choice to make.
How could I make a choice like that? As nature's greatest prevaricator, I chose not to. On with the TURBs. Then in 2018, my doctor retired. I knew I could outlast him! New doctor, new opinion. In summer 2019, I passed quite a noticably large bloody lump, and knew it was time to see the replacement doc. He operated - a very large T1 polyp. Only one? I laughed - I used to have lots at a time. No, very serious, he said. Incidentally, I noticed one thing - after this operation, in recovery there was no bleeding into the attached bag. The previous doctor, using a lazer for TUR surgery always left me bleeding for days even when just taking bladder wall samples. So while the new chap was saying what a huge chunk of the bladder wall he'd had to cut out, I was marvelling that it was all so clean.
The new young doctor was deadly serious and firm. I should never have been allowed to muck about all these years. A break out of the tumour beyond the bladder could be a death sentence in short order. How soon could that happen? Could happen in a month. Cystectomy, using the robot, was essential and soon. So I went to the university hospital., had the consultation with the same guy as 2016, and booked myself in. I also had that lengthy scan in the MRI type machine that lasted half an hour with lots of noise and throbbing. Still playing my last cards, I went to my GP and asked what the report from that machine said. Well, it says you have a compressed disc in your back, and that there is no sign of any cancer invasion of the bladder.
OK, so I thought about what life with a neo-bladder would be like. I considered, I don't actually have cancer right now, this is precautionary. You can't get bladder cancer if you haven't got a bladder. I went back to my local doctor. I said "I am not going to have the operation". He said, "Well, I didn't mention it, but you also have cancer in situ". What could I say to that? The operation was back on.
Then I saw a TV programme, a myth busting type one where a doctor was going to answer the question, do you urinate more if you drink alcohol. This involved collecting urine in bottles, and I realised that my urine was always browner than that of the people in this test. So I went to my GP. Do I have a urine infection? Yes, the test came back. And I found one thing on the internet, discussing whether the irritation of a urine infection could cause bladder polyps. Enough for me to cancel my cystectomy. "What support will you offer to a fool like me?" I asked my hospital doctor. Come back every three months for a check-up. But you will probably be too late and die.
The first type of anti-biotic failed to shift the infection. The brown hue was still there. It took a second type to finally clear it. I saw a light golden colour. Amazing!. So, what heppened next? Nothing. I went back after six months rather than three for a laprisc... the long probe into the bladder. Nothing out of the ordinary. When would I like my next appointment? I'll call you about that. So I've left it 18 months now and still no cause to go back, and believe you me, after nearly ten years experience, I know the symptoms of the return of bladder polyps. I think I'm clear of this problem. So I'm reporting to you here. When I was wrestling with those decisions, I never read anything but.... follow the doctors advice.
So my conclusions about this are (And this is for me, I am not councilling anyone else to do as I did, merely telling you my experience)
The reason that, after returning practically every three months, my bladder polyps suddenly stopped is that it could be luck or because
a) The old school original doctor was so bad with the laser cutter that his bloody exploits re-seeded the polyp tumours all over the bladder and the new doctor, with a steadier hand and no bleeding after, managed to contain this process.
b) A chronic, symptomless bladder infection can cause bladder wall irritation leading to polyps. My initial doctor visit was because of chronic tummy ache in no specific place. This stopped completely as soon as the second anti-biotic cleared the bladder infection, leaving me without these attacks for the first time in 20 years.
Or it could be c) I started taking 1/4-1/2 an asprin a day about six years ago after some report on its anti-cancer properties. It probably isn't this, but I don't dare to stop doing it now, in case that is the answer. It's like my lucky charm.
My observation is, the urology specialist has one treatment to offer if you fail BCG. And he will definitely cure you with it. If you don't have this operation, you probably end up transferred over to oncology, and then in a way he has failed to save you. So you are pressed to have the only operation that have to offer you.
Finally to be clear, over all that time I never had deeper than a T1 invasion, so if you have anything deeper, I'm sure you should take the advice given.
Hope this all helps someone.