Turbt

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Good evening, I’m new to the forum. My husband has in the last few weeks been diagnosed with bladder cancer. He had a TURBT last week. We now await histology. Further tests and further surgery we’ve been told. 
We have been told the tumour was larger than expected. I am beside myself with worry. Is it treat me, is it contained, has it spread etc

my husband is optimistic and says what will be will be not to waste time worrying it won’t change anything. 
He was supposed to have a stent ok but they didn’t manage to get one in, he has hydronephrosis too. 
it is all the waiting that is so scary. 

  • Hi and welcome to the group although sorry to hear your husband has a bladder cancer diagnosis. Firstly be aware that bc can be treated successfully and many of us here can tell the tale. The early days if not knowing and uncertainty can be the worst. The TURBT results will show what they are dealing with as a stage and grade. The stage is how far it has advanced, and the grade is how aggressive it is (Don't worry about the word aggressive, it is common language). A further TURBT just to mop up and give them a more accurate diagnosis. Scans will also give them a bigger picture and rule anything else out. Once all the info is collated, they will then come up a with a treatment plan. Best wishes.

    Best wishes to All,   rily.

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  • Thank you so much, yes he was going to also have a stent fitted when they did the TURBT, they didn’t do that but we don’t know if it’s because they couldn’t do it, or it wasn’t needed?

    when we spoke to the Macmillan nurse she thought he was having a nephrostomy? So we are so confused. But as you say once all scans and histology are back we’ll have a better idea what is going on. 

  • Hi pixie27,Welcome to the group.I hope it provides some help and support for you and your husband.The waiting is never easy but most people feel less anxious once they have a treatment plan.Best wishes Jane 

  • Hi Pixie,

    So sorry to hear about your husband. Mine also had a large tumour which was causing hydronephrosis due to where it was. The urologist was convinced it was muscle invasive and after the first TURBT referred him to a teaching hospital for cystectomy as he felt the position made it too difficult to remove what was left. 

    The urologist there agreed to try a second TURBT and removed the tumour which was non muscle invasive. His hydronephrisis improved and hasn't been mentioned since.

    It is such a frightening time - I still vividly remember the fear now but just to say, they were very blunt with my husband but it wasn't as serious as they had thought. You aren't alone - I have only dipped in here when things have been difficult but it is a great source of support and information. If there is anything at all I might be able to answer, just ask. Wishing you both the best xx

  • Hi Catfan, thank you for your post. 
    mots goid to read some positive posts. We are gearing the worst. Awaiting histology and scan results. 
    All we know is from the TURBtT they didn’t stent as planned to help the hydronephrosi. 
    we still don’t know if is because it wasn’t needed it they could t do it ?

    Having a Macmillan nurse that said it doesn’t look good hasn’t helped at all.

    we still don’t know if it’s contained to the bladder, if it’s invasive etc so everything feels so scary at the moment. 

  • So sorry Pixie. It's just awful being in this period of not knowing and not helpful to be told it doesn't look good - it seems so uncaring. Noone had anything positive to say when my husband was diagnosed - not even a suggestion that he would be OK. In the end I contacted our GP who rang him and gave him some hope. I think they can only tell if confined to the bladder when they have the biopsy results and also any CT scans results.  My thoughts are with you x 

  • Thank you so much, yes we too have had no positive news or encouragement at all. 
    My husband is sleeping all the time which worries me too. xx

  • Mine has slept more since his bc but he's got other reasons for this too. After only a week yours may not have fully got the anaesthetic out of his system. There can be big genetic variations in the body's ability to clear drugs and the NHS haven't even scratched the surface of this yet....And a TURBT involves creating a wound, which needs to heal although it can't be seen. This takes energy.

    You could check with a trusted pharmacist if there is any reason not to give him a good quality daily multivitamin/mineral [btw no supermarket on I have ever checked, quit a few, counts as good quality and only the most expensive at Boots and Holland and Barrett]. Should be taken with a meal not including wheat fibre [eg not most breakfast cereals/toast]. Extra B group vitamins can safely be got from Marmite/Bovril to aid digestion and nervous system.

    Hope her perks up soon, 

    Denby

  • sorry 'he' tired typing

  • Thank you Denby, You’ve given us lots to think about