Worried, no idea what to expect

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My mum is 81 and was referred for a cystoscopy early December due to not being able to urinate, she has been catheterised ever since. We finally got the cystoscopy on 16/2 which showed abnormalities , I was with her and was handed a sheet on the turbt process and was advised she would hear about that , but she was also called back in 3 days later for a ct scan on the urethra as they had seen abnormalities in that also when doing the cystoscopy. During the cystoscopy she was asked if she had ever worked with chemicals or smoked ( she hasn’t ) and although it hasn’t been officially diagnosed we are pretty sure we are dealing with bladder cancer . 

We have heard nothing since so we are a month on and we believe awaiting the date for the pre-op for the turbt, but the dr did say they would check if she was fit enough and whether to do a spinal or general anesthetic. However I am thinking that I if the cancer is in the urethra then it’s outside the bladder , and they may not even do the turbt, but will we still be called in to discuss this? Every time mum mentions anything now ( such as she said she was a bit breathless one day this week, and then today her shoulder is hurting) I am thinking this could be cancer spreading , even though she hasn’t been officially diagnosed. Does this all sound like the normal process and should she be given an appointment in due course to discuss what is happening? I just feel like we are completely in limbo and don’t know what or when to expect anything further?

  • Hi  and welcome to the group although sorry to hear about your mum. We know waiting times are getting longer these days but it is always worth while giving the urology dept. a ring to check she is on the list and to give them a nudge. Once she has her TURBT they will have a much better idea of what they are dealing with, and they will put a follow up treatment plan in place. Various aches and pains are not uncommon at this stage and it is easy to think things are getting worse but it is not always the case. Surgery goes on fitness rather than age. We have had many members over 80 who have been treated successfully. Best wishes.

    Best wishes to All,   rily.

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  • Thank you so much, I know mum is on the waiting list , I’m just worrying that if they decide it’s not beneficial to do the TURBT if the cancer is outside the bladder that she will sort of be lost in the system and will be at the bottom of  the pile , I know that sounds silly I’m just thinking all sorts , I think once we get the official diagnosis and know if there is a plan we will feel better

  • Hi Jules55a,Welcome to the group.Sorry to hear about your mum.The TURBT would be the standard procedure to diagnose the cancer along with a scan.It would be very unlikely that this would not be done.Once the biopsy results are back you will have the full picture.Things feel better once a plan is in place.Best wishes Jane 

  • Hi jules55a 

    Must wanted to say hello .. my father 83 too has had a cystoscopy last week and put forward for Turbt .. as seen abnormalities during the process ..so much information to take all in . We’ve had pre op this week and have MRI booked in a few days time and a ultra sound of heart next week also as he suffers with heart problems as I fear he won’t be able to have a general anaesthetic and would need to be a epidural.. hope all goes well for you .. it’s been a whirlwind of a week all the information to take in .. take care x

  • Hi, we are still waiting to hear about the turbt , no pre op yet , apparently mum is on the waiting list, I suppose it depends on the trust how long that is, there’s certainly no rush, I can’t believe how long we are waiting to even get a definitive diagnosis of cancer. Thinking of you and your dad x