Just been diagnosed

  • 19 replies
  • 75 subscribers

Hello everyone. I just got my results after a TURBT. My cancer is invasive and my options are radiotherapy or full bladder removal and a stoma.

In complete shock and looking for anyone who has been through this or us in the same place as me. 

  • Evening Liza 

    sorry to read of your diagnosis I myself  am still early in my journey but just wanted to say there is people on this forum who have had a diagnosis like yours and are very knowledgeable and supportive and I’m sure one of them will pop up with a reply soon enough 

    all the best Ste 

  • Thank you. It’s so kind of you to respond 

  • Hi  and a welcome to he group from  me. Sorry to hear you have been diagnosed with MIBC and the decision you have to make. There are pros and cons for each treatment and you need to gather as much information as you can to decide on the best way forward for you. Both treatments can be successful. I had a similar choice to make and chose the chemoradiation route which has so far been ok for me. Happy to answer any questions on this treatment. Many here have had bladder removal and will be able to answer any questions regarding that. Best wishes.

    Best wishes to All,   rily.

    Community Champion Badge

    What is a Community Champion ?

  • Hi Liza25,Welcome to the group.We are all here to help and offer support.I had bladder removal in 2019 and live well with a stoma.There is plenty of experience  here of surgery and radiotherapy so  feel free to ask questions.There is usually someone who can advise.Love Jane x

  • Thank you. I’m just all over the place at the moment. Can I ask what factors you took into consideration when reaching your decision to go down this route. If you are able to share these I think it would be helpful when discussing each option with medical professionals and asking the right questions myself! 

  • Thank you! I’m all over the place at the moment! If you are able, I would be interested to know what factors you took into consideration when deciding to have the bladder removed. I think your experience and information will really help me in making my decision as well as hopefully being able to ask the right questions with medical professionals. Thanks again. Much love Liza x

  • Hi Liza,It’s understandable that you are all over the place.The diagnosis is a shock and then to be told you may need surgery is a lot to take in.I had an aggressive Squamous cell cancer.A solid tumour was causing a big obstruction so the bladder had to come out.I had no choice as Squamous cell doesn’t respond well to radiotherapy.Cystectomy is a big operation and you can get complications.Recovery usually takes a few months.I felt better after 3 months but it was 8 months before I went back to work.I was a full time carer for my late disabled mother.You can still lead a full life with a stoma.It all seems a bit daunting at first but it’s amazing how quickly you can adapt to having one.You have stoma nurses to teach you how to look after the stoma.You could try writing down the pro’s and con’s of the choices and that might help with a decision.Although I had no choice I did have a long discussion with the surgeon pre op and was able to ask questions.I expect the others will be along to share their experiences and that should help you decide.Love Jane xx

  • Hi  . I opted for the radiotherapy route mainly for wanting to keep my bladder and didn't like the idea of the big op and long hospital stay. My oncologist offered me RT and said I was a good candidate as I had one large tumour which would have been a good target. I had six weeks of chemotherapy first, then a break with a few scans along the way, and then on to daily radiotherapy sessions for six weeks. I tolerated all the treatment well with no real side effects. My treatment was in 2013 and so far so good. Best wishes.

    Best wishes to All,   rily.

    Community Champion Badge

    What is a Community Champion ?

  • Thank you. That’s really helpful