Muscle invasive Bladder Cancer.

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Hello, I have been diagnosed with muscle invasive Bladder Cancer and am making a decision on whether to have RT or bladder and Prostate removal. Has anyone had experience with either treatment to help me decide which way to go?

  • Hi Rig, I am sorry about your diagnosis, there are some lovely people on this very helpful forum, with experience of your diagnosis. I am sure someone will be along soon to help out. I just wanted to say welcome, you are among friends.

    much love Angela 

    Much love Angela x

  • Hello  and a welcome from me . I was diagnosed with muscle invasive bc (T3/G3). I had the same choice to make. I met an oncologist who is an advocate of bladder preservation where possible. I was told there is no evidence  to show that one route is better than the other in cases of MIBC. There are pros and cons to each with no guarantees. I chose bladder preservation with chemoradiation. So far ten years later I still have a normal functioning bladder. RT does not involve any surgery or hospital stays.  It is along process but you can carry on as normal. Many here have gone the RC route and should be along to share experiences. Research as much as you can on each and find the best for you. Stay away from Google as there is a lot of misinformation out there. Happy to answer any questions on the RT route. Best wishes.

    Best wishes to All,   rily.

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  • Thanks very much, it is a bit daunting and has been a whirlwind so far . So good to hear that ten years on you are going well.

  • Is it possible to let me know what was involved on the RT route, how long was the process? how long did it take to recover? Good and bad points . Thanks so much for your help.

  • Hi  . I had six weeks of chemotherapy (Gem/Cis). Once a week. I had two delays because of low blood counts which is common. This took it to eight weeks. Didn't really have any bad effects although some people do. Several weeks break to let the chemo do its job and for things to settle down. I had a PICC line fitted. More of a nuisance than anything else. Various CT and MRI scans. Then on to six weeks of daily radiotherapy. Each session only takes about 15 minutes but the daily round trips were tiring. On weeks 1 and 4 I had a chemo pump fitted to the PICC line (5FU/MMC). This helps the radio to work better. Besides tiredness I didn't have any bad reactions. Although off work I was able to pretty much carry on as normal during treatment. After treatment finished things started to catch up with me. I had erratic bowels for several weeks but it was manageable. Also bouts of fatigue but things gradually got better and back to normal. I was closely monitored afterwards and now still on annual flexi scopes. Best wishes.

    Best wishes to All,   rily.

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  • Hi Rig,Welcome to this friendly group.I had a rarer type of cancer and was a T3bG3.I had to have a cystectomy and had an Ileal conduit.I manage well with a stoma.It usually takes a few months to recover from this operation.It’s usual to feel very tired post op but with time energy levels pick up.By the 3rd month I felt better but it was 8 months before I went back to work as my mothers full time carer.There is plenty of support and advice here so feel free to ask questions.We are all here to help.I am over 4 yrs post op and currently cancer free.Best wishes Jane 

  • Thanks very much , I appreciate your help.

    Regards Rig 

  • Hey Rig...so I think alit of it will have to be what type of cancer you have...I was diagnosed with a to but the type of cancer I had does not respond well to chemoradiation .so I had my bladder and prostate removed 2 yrs ago and as it turns out I have 2 types of cancer...the super scary one is small cell. But I'm 2 yrs and the cancer has not spread but I do have issue on my lungs without any progression. I am pleased to be alive and watch my grandson grow big enough to call me papa...I'm not sure if this helps but do your do diligence and try not to Google to much...plus keep in mind of all of the side effects.

  • Thanks very much for your help, it's so helpful to hear about individual experiences.. All the best to you. Rig

  • Hello Rig,

    I haven’t been on this forum for quite a while. That’s what happens when everything goes well! My husband had a RC in Feb 2019 at the age of 78. I had just turned 70. We were both devastated. As I remember he had T3/4. No possibility of chemo - too low blood count. He went straight into removal of everything.( he had survived prostate cancer 7yrs previously).

    7/8hr op at Bradford RI by an amazing machine +consultant. He has a stoma and one stent into his kidney, which is changed every 3months. Not ideal - but he is still here 5yrs later and has just had a clear yearly scan. 
    He does suffer from frequent UTIs- from the stent I think- but he copes with antibiotics. He will be 84 this year.  We have a normal life and holiday many times a year. 
    I know how scary this diagnosis can be, but despite their (NHS) faults, I do think Cancer specialists really do know what they are doing in this country. You should have access to a specialist nurse, consultant and MDT who will offer you options. In a way we were lucky. We didn’t really have an option. It was removal or …..

    I hope you have someone to support you in decisions you will have to make- but take a deep breath and move forward! Be positive - and go to McMillan in your hospital and ring them up when it all gets too much!  I cried a lot to these poor people Pensive but never in front of my husband. All best to you and the kindest of thoughts to you. People on this forum are amazing!