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Bladder Cancer

chlo
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My brother was diagnosed with bladder cancer last sunday (30th) and was originally told he had just 'weeks' to live.  

After a rough few days getting him in and out of the hosiptal for further checks he undergone an Ileostomy due to the swollen bladder pressing on his kidneys.   They puncutred his kidney and have fit a bag to relieve some fluids i believe..   

The hospital told us they need to do a biopsy to find out what type of cancer her has so they can look at treatment/prologing his life from there.  Following this he may get up to 1 year we was told.

Just 1 day later they then told us there is no point now in a biopsy as the results will take 4 weeks to come back but my brother will have passed on by then due to how much his cancer has spread.  

Now again 1 day later again they have now said they need to get a biopsy done as they are 'pressed for time'.  Arent we all!!!!  This is now not planned in until Today or tomorrow 8/9th April.  

Can someone please help me and advise me.  He is not getting the correct care he desserves and should be proivded by our NHS.  I understand he is very poorly and it has spread far, but just because it is terminal and advanced that does not mean he is any less deserving to start any form of treatment.  He is just being pushed to the side by this awful Urology department and hospital.  The care he has received has been absolutely disgusting

He has not had an MRI and he has not had a CT scan.  This is all based of blood tests and an ultrasound camera check... they have told us it has spread as far as his heart but my brother is still himself moving about, going out and about just enjoying his last few days.  

This is not fair and he deserves far more help than he is getting.  

Please any help for us all

  • Hi Chlo,

    Welcome to the online community. Thank you for getting in touch at what sounds like a very difficult time.  

    My name is Ursula and I’m one of the cancer information nurse specialists on the Macmillan support line. I am very sorry to read of your brother’s diagnosis of advanced bladder cancer and that you feel the care he has received has been absolutely disgusting.

    From the information you have shared, acknowledging that the plans for your brother’s care and treatment have changed numerous times over the space of a few days. my understanding is that he should have a biopsy either today or tomorrow.

    The results of a biopsy can take around 2 weeks to come back. They are then usually discussed at a multidisciplinary team meeting to plan next steps including whether there are any possible treatment options.  This must be very difficult and confusing time for you all, it is understandable to have questions and concerns. Being told that your brother has just weeks to live, to then be told that with treatment his prognosis could be up to a year is a lot of different information to process.

    As we are independent from the NHS and do not have access to medical records or information, we are therefore unable to offer personalised advice. We do have some general information which I hope may be helpful.

    Understanding your cancer care rights is information about an individual’s rights as an NHS patient. Please note this content applies to the English healthcare system.

    Given how you feel your brother’s care is being managed it may also be worth speaking to the PALS team at the hospital. Your brother may also wish to look into getting a second opinion, but to note this can take time and may prolong the wait for treatment.

    I hope that the above information is helpful. The uncertainty at this time can feel overwhelming. It can also be challenging supporting someone with a cancer diagnosis, and it’s important to look after yourself as well. You may like to look at our resources on emotional support for family and friends, or look at our friends and family forum here on the online community.

    Sending best wishes,

    Ursula

    You can speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email. 

    Ref: UH/JF

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