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Cancer treatment advice for somebody with CP please

Cyc2018
Cyc2018 Member Posts: 4 Listener
edited November 18 in Cerebral palsy
I'm looking for advice regarding cancer treatments. My dad has recently been diagnosed with bladder cancer. He has been advised the best treatment to go along with keeping his daily life as normal as possible would be palliative radiotherapy. He tried to have a planning scan but couldn't keep still due to his cerebral palsy. We are now waiting for consultant to call with what's to happen next. We are hoping its a case of being referred to somewhere that can sedate/ga him to have the once a week radiotherapy. 

Has anyone experienced this type of treatment?  Any advice would be great. Or if you can recommend any consultants/hospitals that are experienced in treating people with cerebral palsy and cancer. As I feel they do not really want to treat dad to cure as its not going to be easy.  If an able body person had it they would have the bladder removed but this is deemed too much for dad as well as radical radiotherapy. We just don't know what to do for thes best. Thanks for any help. 
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Comments

  • woodbine
    woodbine Community Co-Production Group Posts: 5,632 Disability Gamechanger
    @Cyc2018 good evening and welcome to scope and our friendly forum, we are non of us doctors and as such aren't allowed to give medical advice or recommend treatments, hopefully tomorrow someone may come along and give you some general advice so it will be worth checking back.
    I am a person with epilepsy not an epileptic, my illness doesn't define me.
  • solly1902
    solly1902 Member Posts: 4 Listener
    with my mother who had cancer they gave her chemotherapy and told us it is to improve her quality of life. Best of luck just keep exploring new options. Speak to your dads oncologist he'll be able to inform you better.

  • calcotti
    calcotti Member Posts: 3,348 Disability Gamechanger
    You may want to go to the Macmillan website which also has an online community.
    https://community.macmillan.org.uk/
    Information I post is for England unless otherwise stated. Rules may be different in other parts of UK.
  • Ross_Scope
    Ross_Scope Posts: 5,416

    Scope community team

    Hello @Cyc2018

    Welcome to the community, sorry to hear about what you are going through at the minute, having a family member go through cancer is never an easy experience.

    Hopefully the consultant calls soon and you can get some answers about how your dad's treatment will work.
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  • Cyc2018
    Cyc2018 Member Posts: 4 Listener
    Spoken to the consultant and 2 asked regarding dad being anaesthetised /sedated for palliative radiotherapy and she's saying they won't do it. We are not convinced does anyone have a name of consultant or hospital in the UK that does this as I'm sure its never been done. We can't understand why she won't try and refer on??. 

    Please help 
  • Richard_Scope
    Richard_Scope Posts: 2,946

    Scope community team

    Hi @Cyc2018
    Sorry to read what you are going through at the moment. I live with quadriplegic CP and have had and subsequently recovered from testicular cancer. I didn't have radiotherapy but I underwent 8 months of intensive chemotherapy post-surgery and had all of the scans that go along with treatment. I was treated at the Arden Centre in Coventry but not without battles along the way.

    Your dad's GP needs to be very proactive in being the liaison to the oncologist/consultant and explaining the presentations of your dad's CP. It needs to be a completely joined-up approach.
    Scope
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  • Cyc2018
    Cyc2018 Member Posts: 4 Listener
    Thanks for the reply. We  just feel that they aren't prepared to go beyond the usual or adapt treatment.  What battles did you have? Obviously this is all new. We are now in limbo land (4weeks) whilst she write to a neurologist to see if there are any tablets he can take to make him has less spasms and sees if his tumour might respond to an immunotherapy drug and also she's writing for surgical opinion now even though she said it's not a good option. For him either. As for his GP he hardly sees her and the last time he went in regarding spasm medication she had no idea what the tablets he was taking. He hasn't had a consultant for over 23 years!!  
  • Richard_Scope
    Richard_Scope Posts: 2,946

    Scope community team

    It's such a common situation with GPs and medical professionals. One that we are fighting hard to change.
    Has your dad tried Baclofen? It can be administered orally or by a pump. It is a muscle relaxant commonly prescribed to people with CP.
    Battles? Where to start? They couldn't weigh me so guessimated the amount of chemo I should receive. Getting to and from the toilet whilst in the hospital was horrendous as I had to drink constantly to protect my kidneys from the chemo. The MRI scans were difficult as they said they were not insured to assist me on and off the tables, so my partner did that.

    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • Reg
    Reg Member Posts: 99 Pioneering
    Hello @Cyc2018

    I am really sorry to hear about your dad and his cancer diagnosis. 

    I have CP and can echo what @Richard_Scope has said about treatment, scans and baclofen.

    I used baclofen to try and keep me still during an MRI scan and it really does help to keep legs etc calmer.

    It does seem a real battle to get help when you have CP as people see the CP rather than the whole picture. A couple of surgeons have told me that they do not like operating on CP patients as they do not know how muscles will react to the surgery so it can feel as if you are left because your surgery is more difficult than others.

    I wondered if specialist charities like the MS society or Parkinsons might be able to say what has worked for people with those conditions?

    I also wondered if you were anywhere near Christies or another centre of excellence for cancer where they may be more used to caring for cancer patients with other conditions. My father was treated there and they were brilliant with him despite him having amyloidosis - he had thought that the condition would rule him out for treatment but he was fortunate in finding a very determined oncologist

    I wish you and your family the very best. 
    Reg

    I am a Scope volunteer.

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