Cancer recurrence after bladder removal

Hi Susb  and welcome to the group although sorry to hear of your recurrence. It must be a worrying time for you, but once a treatment plan is in place there will be something positive to focus on. Lots of support here going forward. Best wishes.

So sorry to hear your news.  Were you initially diagnosed with muscular or non-muscular invasive bladder cancer?  I was diagnosed with high grade - grade 3 non-muscular invasive bladder cancer before I had a radicle cystectomy.  Once diagnosed with cancer I doubt we ever get over the fear and have to try and learn to live with it.  There is is no easy answer, I guess we just have to try and deal with it the best way we can.  I think Bowelbabe had it sussed the best and has inspired me the most.  Despite all the crap and difficulties you have to attempt to live your life and enjoy what you can - for as long as you can because once you give in, the battle is lost.  WAITING for any RESULTS and TREATMENTS are the worse.  Scream and shout whenever you feel the need to relieve the stress and tension.  Try to find some form of comfort in what you can do and enjoy doing daily no matter what it is.  A walk helps if you can.  Be kind to yourself and when you get over whelmed after you have a good shout and rant, maybe a  cry too try to relax and do deep breathing.  We just have to keep reminding ourselves why we made the choices and chose the treatment we did - cos we wanted to live and they seemed the best options at the time.  The biggest shock being we find out we are stronger than we think.  It is a continual mental and physical roller coaster ride. One step at a time  Once diagnosed with cancer I guess it is always looming there in the background, I hate that.  Never stop reaching out, asking questions or having a good rant when you feel the need  You are never alone because we understand how you feel as we are at all different levels of treatments.  Try to maintain your sense of humour the best you can.  Try not to focus on the unknown until you get any results and you know what you are up against - I know if only it was that easy.  I hope your prognosis's is good, in the meantime try to look after yourself.  Best regards John

Hi Susb,
Same thing happened to me.
Had my bladder removed in June 2020 and scans showed cancer in pelvic lymph nodes in July 2022.
Have been on immunotherapy in conjunction with a trial antibody drug that delivers chemo to the cancer cells since October.

So far scan results show its under control and has not spread.
All you can do is get the best treatment available and as John said keep your sense of humour and don’t worry about the unknowns. It easy to say, but I live by that and life is good.

Ask your oncologist if there are any clinical trials you could get on. Not only would you get leading edge treatment but also greater monitoring and focus.

cheers
Chasam