First of all to all the lovely people on this forum a big thank you for all your messages, the cancer has gone muscle invasive now so ive been offered radiotherapy/chemotherapy or RC ive gone for radiotherapy/ chemo if anyone has gone through this any info would help feeling drained so a early night take care everyone Phil x
Sorry to hear it's muscle invasive Rictic, can't offer any advice re chemo or RC but plenty on here have had similar or the same treatments. Have a search I'm sure you will find lots of similar stories and hopefully some with better advice will come along soon.
From what I've read people see RC as the worst case scenario but for me based on what I've learned so far if it has to come out then so he it, yes it will take some getting used to but if that's the best course of action then try and go with the advice the consultants give you.
I've already decided I'd go with the RC if it came to it based upon what I've leant do far, yes it means having a stoma and bag and a lot of people feel afraid of that, but the other option Is a neobladder which has to be trained to work properly. Some have the neobladder and are quite happy with it long term, others stick with a stoma and bag. Whichever works for people as not everyone is the same.
There is a lot of stigma around stomas unnecessarily so, you can't tell when someone has a stoma bag on most the time, I think people are frightened understandably as it's a big life change. On the plus side just think of the upsides too, makes car journeys a breeze when travelling.
I know full well it's not the news you wanted to hear but plenty have gone through this and still live a full life.
Talk to the team and discuss all your options and then once you have talked all options through you can decide your best course of action for you. What works for one doesn't always work for another so some of it will be down to personal choice.
Again sorry it's wasn't better news, but try not to be too hard on yourself and seek all the help there is available to you.
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My name is Simon. But Si is also fine, in fact you can call me anything you like it’s only a name after all 
Much love and hope to everyone past future and present.
I also hate autocorrect and hope people can make sense out of my posts when it changes half the words I type.
Hi Phil. I had Chemoradiation. I had six weeks of chemo (Gem/Cis). I then had six weeks of daily radiotherapy (Mon-Fri). I believe the latest protocol is now 4 weeks with a stronger dose. On weeks 1 and 4 I had a chemo pump for the week with a PICC line (5FU/MMC) . This helps the RT to work better. I tolerated all treatment quite well, although we know some people may have adverse effects. My treatment was over ten years ago and I believe the radio machines are far better than the old clanky ones used on me. After treatment finished, I had bouts of fatigue and erratic bowels for several weeks but it gradually eased. Radiation will probably make you infertile, but not impotent. I hope all goes well if you go this route. Happy to answer any questions if I can. Best wishes.
Some very excellent insight into things that can be ahead so thanks for sharing that with Rictic, for me I find it easier to know as much as can so I can make my choices quicker and easier if it should come to it. But I also understand some people don't want to know too much in advance as well. We are all different in how we deal with things.
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My name is Simon. But Si is also fine, in fact you can call me anything you like it’s only a name after all
Much love and hope to everyone past future and present.
I also hate autocorrect and hope people can make sense out of my posts when it changes half the words I type.
