Diagnosed

Hi Kev30, welcome to this very friendly and supportive forum. I am so sorry to hear of your diagnosis and upcoming surgery. The shock is of the diagnosis alone sends us all into a spin . It sounds like you have had the turbt already and been given a tumour stage and grade. All has happened in such a short space of time, no wonder you cant get your head round it. I am wondering what support you have been offered from the hospital ? Do you have a specialist cancer nurse ? There are many on here who have been through the same as you Kev , I am sure someone will be along to give advice . Stay with the forum and we can help support you and steady you through this .

I havent had bladder removal myself, but have had a high grade , high risk tumour removed and on preventaive treatment. 

Hi Kev, it’s a huge shock isnt it? There a many that can help you on this forum. I am waiting for bladder removal myself. Waiting can be the hardest part. Atb Leo

Hi Kev30,Welcome to our friendly and supportive group.You have had a shock diagnosis and it’s bound to take a while to adjust to the news.There are a few of us here who have had bladder removal and can help you.I’m sure the men will be along to advise you.If you are able to get as fit as possible before the surgery that will help.Feel free to ask any questions as there is usually someone on here with experience to answer.We are all here to help and support you so hopefully you won’t feel alone with the diagnosis.Love and best wishes Jane x

Yes I had the turbt on the 31st August at the Churchill hospital.everything has come has a very big shock to me because I had cancer screening done four months ago and everything was clear . So was in an unbelievable state when I got the news . I’m only pleased they found it by accident after a CT scan.

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Yes it is a very big shock me and my partner are still coming to terms with it all . It’s shocked me how rapidly the hospital ( Churchill ) have dealt with me and my employer has been wonderful too 

Hi Kev,

Welcome to the club. I had my bladder removed nearly 2 years ago. I now use a stoma. I'm female by the way but know many men who have had the prostate removed and they have all coped well. As have I with the bladder. I had the Turbt and 3 weeks later we confidently expected to be told there was nothing, or if there had been it was all gone. My husband was planning to take me to the Ivy for breakfast to celebrate. We still went but with the news I would be having chemo and then the whole bladder out.

The first thing I decided, despite the shock, was that I would have to learn how to deal with this and, because I wanted my husband to have as little stress as possible, to keep on top of my emotions. I always think the patient has it easier in some ways. You do what needs to be done, but relatives can only worry. First lesson - worry doesn't cure cancer. Second lesson, learn all you can about what you've got, and especially how the doctors intend to treat it. That way you can feel as if you are in charge, not the cancer.

My chemo wasn't pleasant but it was bearable. I lost some hair but it all came back. I often did feel weak but the oncologist adjusted the dose when needed. I made sure to keep as active as possible. The op (robotic) was long and the physios told me what exercises to do as prehab so as to be as fit for it. I chose to have a stoma as I thought I'd manage that better than the newer alternatives. As I said above that was the right way forward for me - and sleeping through the night without having to get up and use the toilet has been a real bonus.

I may sound a bit of a Polyanna but one reason for being positive was that my mother had bladder cancer in 1974, found out too late (had ignored it) couldn't be treated and died 10:days after she told me she had it. She would have loved to have the chances that I have had. 

So good luck with it all and keep asking the questions. I must also say that each hospital and indeed each surgeon/oncologist has their own ways of doing things so don't worry if you hear about others having different things. I am being treated at UCLH in London.

Latestart

Great reply Late start

Thanks Leo

Thank you for your tips and words of support and encouragement latestart 

Hi Kev,

Sorry to hear you’ve always had this life changing news. I don’t think it is something we can ever truly believe. I was diagnosed in June this year and still can’t believe it, like a bad dream. 

Hoping it all goes well for you for the operation. 

Best,

Lee