trying to distract my brain

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My mum had a CT scan on the 4th of April, appointment on the 16th confirmed bladder cancer. she has recieved letter today just confirming what was discussed in the meeting. 

I am so worried - all we know is that since july time last year she kept having UTIs with confirmed bacteria and only microscopic blood which was going down after each antibiotics treatment.

she had an ultrasound cause it wouldn't go away confirmed a small diverticulum, multiple stones and one non specific hyperechoic projection - them telling us they think its bladder cancer has completely blind sided us. 

I am confused though why an MRI scan of the pelvis and a CT scan of her chest? we dont know what was seen on thr CT scan and im scared to asked the hospital to confirm. is this normal for staging?

I am trying to not go down a rabbit hole of advanced cancer or MIBC cause when I read about these test they suspect its MIBC, I dont even know what im seqrxhing for posting this. I suppose just to project my worry! 

  • Welcome to the group. It is quite common to have lots of scans at first so that the medics have a full picture of the situation and can advise on the most appropriate treatment. Has your Mum had a cystoscopy yet (a look inside the bladder with a camera)? 
    If it is BC, there are different treatments according to stage and grade. The waiting for results is a stress we are all familiar with. Try to stay off Google and just be patient until called in to see the consultant. Best wishes to you both.

  • Be assured that once BC is suspected all the tests are normal and routine. The MRI etc is to check for spread to other organs and lymph nodes it is normal pecedure to check these things out immediately. it does not mean there is something there and again until she has a cystoscopy and pathology results back it could be any number of things as well as BC. 

    It is a shock to the system for anyone we all know as we have all been there, try to avoid googling and assuming the worst not easy I know,

    People hear the C word and always assume the worst case scenario, when quite often it isn't the worst case scenario and can be managed or treated effectively. 

    That's not to says it a walk in the park but ty to take each day as it comes and deal with any problems that arise as they present once you have some answers you know what you are dealing with at least then. 

    The uncertainty and not knowing is one of the hardest parts to deal with. 

    ________________

    Much love and hope to everyone past future and present. 

    I also hate autocorrect and hope people can make sense out of my posts when it changes half the words I type.

  • thank you! she hasn't had the camera, the doctor has gone straight to TURBT she was meant to have the camera but he cancelled it saying he wanted to go straight to TURBT. Again my brain over thinks that and thinks why has he done that? 

    I am just a massive worrier.

  • Hi worried_daughter, I was supposed to have a camera cytoscopy but went straight to TURBT after CT scan. The explanation to me was that the scan clearly showed a lesion and a camera cytoscopy would be an unnecessary extra delay, because a TURBT is essentially a camera with the added ability to remove the lesion. So that's how I proceeded and I glad I did because it meant a shorter time from scan to actually dealing with the cancer

  • thank you for your words!

    I am just a massive worrier i over think every word or every move a doctor makes. it doesnt help that I have health aniexty that comes with OCD and cancer is a massive trigger for it as I lost my aunt to breast cancer a few years ago and its like my worse nightmare has come true.

    I am hoping for it to be nothing but being realistic after she has her turbt, I actually just got off the phone to her and she is in a more positive mood and more upbeat about this whole process.

  • thank you so much! that does make sense. I am trying to stay off google and just listen to what is actually being said to me.

  • You're welcome! I got (and still get) general advice and info from here, and specific advice from the Clinical  Nurse Specialist (CNS) team from my urology ward. In my experience they are excellent and pragmatic (and will happily talk through how procedures work, including what they do and why  in your local hospital, timelines, etc)

  • When cancer of the bladder is suspected there are various commonly used investigative tests which help the specialists to diagnose and plan a course of treatment. While it is true that most will have a flexible cystoscopy (camera) as the initial procedure, a hospital will always review a patient's needs versus the available resources (staff and facilities) when plotting the sequence of events, so variations are quite common. Mine was ultrasound, CT scan and a flexible cystoscopy on the same day, TURBT scheduled then cancelled - replaced by radiotherapy - two  TURBTs the following year and that was all in 2017 and 2018. I'm still here, doing ok on palliative treatment since 2019. Unusually, both TURBTs failed to obtain sufficient material for the path lab to analyse for staging. I still have my bladder, a slowly re-growing tumour and have had a urethral catheter + bag since late 2018. Yes, I entered this scene full of worry and fear but discovered this forum in 2023. It was a huge help. Stick with us. We are non-medical but have had a wide variation of experiences so someone will usually respond to give you an idea of what may or may not happen next. Best wishes. Ray (76).

  • Totally understandable how you are feeling. 

    ________________

    Much love and hope to everyone past future and present. 

    I also hate autocorrect and hope people can make sense out of my posts when it changes half the words I type.