High grade Non invasive bladder cancer

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I was diagnosed with CSI a week ago. Was told they had removed the cancer when they did a biopsy on the2 October . Had a Ct scan yesterday 20 November to check ck for any residual cancer cells  and seeing the hospital nurse on Monday for the  start of the BCG treatment .Has anyone else had this and how did it go ? I am feeling scared and need to talk to someone else who is going through this.

  • Good evening Odin. My experience of BCG , a straight forward procedure lasting five or ten minutes. Uncomfortable rather than painful. Some talk about after effects but I had none . Remember that modesty and urology don’t go together , best wishes, John

  • Hi Odin,

    Currently just over half way through my BCG treatment's. 15 of 27.

    The actual process of having the BCG inserted into the bladder is pretty painless. They ask you to retain in the bladder for a couple of hours before voiding. 

    I don't always make the two hours, but it seems to be working so far ( touch wood).

    For about 24 hours after I have extreme urgency which can be tiring for sure. 

    Overall it's not been too bad for me. Although the last couple of sessions did make my bladder inflamed, which caused some discomfort.

    I hope you find the process ok also.

    Trevor 

  • Thank you .its the fear before that is getting me.

  • Tx.As for modesty that went out the window a long while ago’ good to hear that it’s uncomfortable but not painful ,I hope that I don’t get side effects

  • Hi Odin I was diagnosed with CIS too and a high grade T1G3 bladder tumour. That was 18months ago , but i still remember the fear you are feeling. I have since had 13 rounds of BCG and so far doing really well, no recurrences. I have a check flexi next week which always causes anxiety , but its something i get through with the help of the lovely folk on here. If you click on my profile I have recorded what has happened so far. Its a bit of a rollercoaster at times , but worth it to keep my bladder. Stay in touch with the forum, we can all help each other . Good luck with the BCG for monday, once the first one is out of the way , i am sure your fear will lessen

    Much love Angela x

  • Tx Angela for helping it means a lot  Elaine x

  • Good to hear will keep you upto date

  • Wow I looked at your profile you are amazing useful read and helpful . Elaine

  • aw thanks Elaine. To be honest its not really something we have a choice about, I don't think I am more brave or amazing than you will be. we have been given membership to a club none of us would want to join . I often have a wobble on here, usually when i am due a check up for recurrence, I don't feel so brave then haha. Your comment about modesty made me chuckle , I have always been a very private person, having to accept  different teams of strangers examining and putting instruments in intimate places has been some adjustment lol !  hope you keep us updated with your BCG and how you are coping .

    Much love Angela x

  • Tx Angela sure is a journey I didn’t plan on but so glad I found the forum . Will keep on posting. Elaine xx