1-2cm lesion - non invasive bladder cancer

Has anyone else had this ? 
 

how did they get on ? Family member diagnosis by flexible scope test today ! A camera ! Apparently they only biopsy at op ! So this is a long long waiting game given wait times for ops !! Then 2-3 week biopsies result back & what then what's that going to show as how can they say it's non invasive early stage !! How do they not know today it could be aggressive type of C ! It could of spread to lympth ! Or do they know ? They can't know as other wise why biopsy ! Yet on the other hand they're saying oh this is good it's non invasive small early stage ! How can they even give reassurance without biopsy results!?
 

did anyone have to stay in over night ? Anyone gone private ? Anyone managed to have the rigid scope removal of whatecer it is mass lesion with epidural as I've read it can be done !! 
 

it's incredibly stressful ! Throw the fact 70 percent covid cases are Hospital acquired no ffp3 masks or testing ! No hepa filters & it's Russian roulette !! I don't want my family in an nhs hospital with all respect the patient staff ratio is horrific due to the system not the amazing staff within 

 

really sad and low it's one trauma after another 

  • Hi there and sorry to read your post. 

    I just wanted to say Ive had bladder cancer for 10 years now, high grade 3 and stage pta, I've had BCG treatment when I first got BC, i stil have 6 monthly cystoscope but think the next one (November) it'll go to yearly.

    yes they only biops on the ridged one and I would hope that would be within the 2 week wait. Most people are in hospital for just the day but depending on the time you have it it could be over night, I was in for 3 days as was bleeding a fair bit but I think they let you home now even with a catheter.

    If it's still contained in the bladder that's good it's only once it's spread out of the bladder other treatment will be involved. Bladder Cancer today if caught early enough is very curable. You say it's non invasive so that means it's still contained in the bladder.

    There a group on face book called Fight Bladder Cancer you'll get all the help on there. You have to join it and it is private.

    Good luck Sue x

  • Dear Sue 

    I greatly appreciate the fact you've noticed my post & took time out of your day to respond ! Very kind & Thoughtful of you , Thank you .

    Im sorry to read your story & I feel so sad for what you've endured ! 

    So my understanding is it's non invasive meaning it's not spread ? So why CT scan ? So without biopsy the stage  is already determined? 
     

    it's the biopsy that will determine the grade  (eg how aggressive the C is eg T1 / T2 and so on ?
     

    So it's actually possible to have non invasive Badder cancer yet Biopsy may show it either low grade or an aggressive form ! This can't be determined on flexible scope ! Which I find confusing as I believed the shape gives indication of grade eg mushroom shape , flat velvet appearance high grade ! 
     

    The ? Advance nurse practitioner or nurse who performed the flexible scope must have a pretty good idea from appearance !?! 
    Like radiology  who take rads they know the answers they just don't tell you ! They need a Consultant or Doctor to give results! 
     

    I honestly think whoever did this flexibility test has seen enough cases to have a pretty good idea ! As if not I find it highly distressing the amount of reassurance provided ! 
     

    Furthermore if it's non evasive I find it slightly confusing why CT is performed prior to Biopsy because if it's not at the stage of invading muscle what reason to they have to believe vits metastasis  ! The only thing I can think of is they are doubting where the origin of the C started ? But even so if it's non evasive how on earth could it have originated elsewhere as it would have travelled via the lining surly ?! 
     

    I believe my mum is going for AM case ! I'll be devastated if it's postponed & she's forced in over night ! 
    furthermore this was found by chance ! It was always determined by GP that the cause of the incontince & UTIS was due to prolapse ! That's been the diagnosis for quite a number of years ! Prior to that the incontinence / urgency to pee not making it to the toliet was attributed as menopause !! 
     

    Ill be absolutely raging if the real cause has been this lesion as if that is the sole cause it has been going on many many years I'd say at least 7 plus ! Which is terrifying to think that by this time that 1-2 cm lesion may be more agressive ! Having said that I believe they'd be other symptoms by now '!

    I salute that The locum GP who arranged this test as without him it may never have been detected ! 
     

    still the reason for the test was a simple bladder emptying test ! At no point did we even consider the outcome would be what findings have shown ! So in terms of the urgency to wee etc mum will be no further on ! 
     

    Also mum has poor reactions to GAs I've read about the procedure being done under Epidural & wonder would the NHS provide such treatment. 
     

    And after all one of my biggest concerns after the Grade of C is the high rate of covid acquired virus ! Highly concerning ! 
     

    I know you may not be able to answer my thoughts ! However , I Thank you for reading 

     

    well wishes to you for the future & im incredibly pleased that you've managed to press on over the years ! You are a true warrior 

    Thanks again for your input 

     

     

     

     

     

     

  • Hi Blondie, first I want to say apart from the first year of having BC I've been fine, hardly think about it now until check up time and I'm sure your mum will be the same, the treatment for none invasive high grade is BCG, high grade is grade 3 sometimes they use BCG for grade 2. Otherwise it's cystoscopes for the low grade. The stage is the one you want to know and what they go on for bladder removal but as your mums isn't invasive she should be fine with treatment ( if any). 
    I don't know why they do CT scans but they do and also use contrast, she'll have one before the ridged scope I think and one after the first set of 6 BCGs (to make sure it's working) I think she should be able to have epidural, it's not a big oparation I believe. 
    The reason they do a ridged scop is to get all the cancer out and dig a bit deeper hopefully then do a biopsy on it and that will tell you the stage and grade and treatment needed (if any). I presume with them telling your mum it's none invasive they have a very good idea from what they saw on the screen. I watch mine every time I have it done.

    Did you join Fight Bladder Cancer, I'd suggest you do as their a great bunch and very knowledgeable.

    Anything else you want to know I'm here, love to you and your mum x

  • Many thanks 

    yes I joined . 
     

    thanks for your words of support 

     

    im very pleased you've come so far you are a warrior putting up with it for all those years 

     

    me being me I pulled this out your reply

     

    "I don't know why they do CT scans but they do and also use contrast, she'll have one before the ridged scope I think and one after the first set of 6 BCGs (to make sure it's working)

     

    I do hope the treatment isn't needed

     

    im up the wall over covid in hospitals too 

     

    I wonder how long recovery takes in terms of housework shopping etc not worried as I can hardly touch a thing with developing covid severe phobia but believe me when it comes to my mum I'll have to find a way I'll walk through fire for my mums health even though itvwill crucify me ! Shopping delivery just as bad as still touching it ! I cleaned all shopping 3x a week for 18 months until mum wanted take over 

     

    of course biggest worry is C but alongside that covid is massive massive worry not only to my mother but my father given age and chest vindications 

  • Blonde

    soory to jump on the thread I'm not bladder infection breast cancer .

    my friends hubby had bladder cancer in April had his tumour removed in July then had 6 weeks chemo week after chemo gone for scan and the cancer is back it was a large tumour first time they said it's gone but first 3 month scan and it back they said my freind is so upset have you heard of this happening x 

  • Well that's horrible news I'm sorry to hear that .

    did your friend husband have non invasive bladder cancer ? 

  • They told her the tumour was very large 4 cm but not attached to bladder wall so I'm not sure , I want to help her they said it was all gone at after operation appointment then 6 weeks of chemo and it's returned already they said a cluster of cells . 

  • Very sorry to hear ! I know they'll be positive & negative findings regarding results on here that's true . However for someone with such a bad anxiety disorder as me you've scared me to tears I was already petrified 

  • That was never my intention I have got cancer myself I'm devastated that it has happened. I read posts here on times it's like shall I read shall I not like opening a can of worms and scare myself but read others that lift me so much , this club is where no one wants to be and everyone will have a different outcome and story I wish you all the very best x 

  • I wish you and your friend well I hope you both get the treatment you need and recover I pray for you