Hello, just starting out

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Hi All

just starting out on this trip I didn’t anticipate going on.  I am 6 years clear of lobular breast cancer, so this was a real shock.

Female, 55, Mum, Wife and Nanny.  

Newly diagnosed with non-muscle invasive bladder cancer starting BCG on the 26th Jan, 3 year regime. Any tips you have to make things easier would be great.

thanks Ange

  •   Hi Ange and a warm welcome to the group. It must be really hard for you after your earlier experience. I am sure you will get plenty of support here as you go forward. I have not had BCG so not much help, but I am sure others will be along to share experiences and tips. Best wishes.

    Best wishes to All,   rily.

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  • Thank you Rily, support will be great and much needed, I really don’t even know what to expect this time around.

    #hopeful #positive

    I didn’t realise a lot of things 

  • Hi Ange, 

    Welcome to this group and sorry to hear about your diagnosis.

    I'm also on the three year BCG program. I've had my 6 inductions, and two sets of three maintenance sessions.

    Overall it's not been to bad. I don't always manage to keep the BCG in for the two hours, but it seems to be working so far (touch wood).

    I do find it a bit tiring for about 24 hours after each session. Mainly because I'm up most of the night with the urgency to wee.

    I've heard some have no issues at all and some do have some side affects.

    At the moment, my bladder is a little inflamed from the BCG, but I'm not suffering to much thankfully. 

    I really hope your treatments go well.

    Kindest regards.

    Trevor 

  • Hi Trevor,

    Thanks so much for your reply, that has settled my mind a bit.

    Am glad to hear your treatment is going well.

    It’s all a bit daunting when you don’t know what’s coming, how it feels, what to expect. Since the TURBT  I am really rubbish at holding my wee I seem to have a 2 minute warning and then need to go, can I ask is it urgency that prevents the full 2 hours.

    Fingers  crossed for us both that we are the ones with lesser issues.

    Good luck with your remaining treatment.

    Best Wishes

    Ange

    #hopeful #positive

    I didn’t realise a lot of things 

  • Hi Ange, very warm welcome to this friendly group of people. I am currently on BCG for 3 year programme. I have completed 4 of the induction , will be having the 5th tomorrow. Its very doable. Click on my profile to get a look at my journey so far and how its affected me. 
    keep in touch, the folk on here have kept me sane , as well as meditation and mindfullness. 
    much love to you Angela x

    Much love Angela x

  • Hi Ange,

    They recommend you don't drink anything for a few hours before hand to help keep the bladder empty and that does help.

    It's the urgency for me, in the beginning it was easier to hold for the two hours but as the sessions go on the urgency does increase. I think it's more to do with having lots of things going in that shouldn't be going in. 

    BCG can inflame the bladder, which I guess means you can't hold as much.

    It was definitely daunting at the beginning, but now I'm really not that bothered, the nurses are fantastic and always put me to ease.

    My next session should be around June 2024, so looking forward to having a small break.

    Please keep us updated with how you get on.

    Finger's also crossed for you also

    Take care.

    Trevor 

  • Hi Angela

    Thank you for the lovely welcome,

    I did read your profile and found it very informative so good for me to see others progressing through treatment,

    I will keep in touch with this group and wish you all the very best.  I feel so much better after hearing from Trevor and yourself.

    thank you

    Ange

    #hopeful #positive

    I didn’t realise a lot of things 

  • Thanks Trevor, your info and experience is really helpful.

    #hopeful #positive

    I didn’t realise a lot of things 

  • Hi,

    Welcome to the group and don't be a stranger. The group is very supportive and knowledgeable, so don't be afraid to ask questions, no matter silly they may seem. 

    I was diagnosed seven years ago and had an RC, so I'm not an expert on BCG, but I do know that Bladder Cancer has a good history of being successfully treatable.  Early days, I know and a bit of a shock, but I find slow steps forward helps.

    It doesn't matter where you go, there you are
  • RE empty bladder prior to BCG instillation, I always use the toilet on the ward to ensure my bladder is as empty as possible just prior to the procedure. Not failed the 2 hours yet, and 9 instillations in so far.