Diagnosed during Covid and waiting for referral

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  • #16190

    JoS
    Participant

    Hi

    I’m here because my Dad was diagnosed with Cholangiocarcinoma 2 weeks ago on 21st December. It was picked up by an MRI for his PSC (Primary Sclerosing Cholangitis) and was said to be 8cm. I have no idea how big they can be but from a previous MRI earlier in the year where there was no growth, it has grown to the current size in 5 months. We are expecting a referral to the oncology department. I wondered how long we should expect to wait for this and when we should start chasing it up? How urgent is treatment? Has anyone experience of starting treatment during Covid? Will I be allowed to be there to support him, I’m his next of kin and support bubble.

    Many thanks for any advice

    Jo

    #16192

    Michaela
    Moderator

    Dear JoS,

    Welcome to AMMF’s Forum. We are very sorry to learn that your father has so recently been diagnosed with cholangicarcinoma. Hopefully others will come in and share their experiences with you.

    It would be appropriate to chase this up now. With COVID, things are taking longer than they should, even for cancer screening/treatment and we know time is of the essence. The sooner you get the oncology appointment, the sooner you will have an idea of your options.

    For your further information, there is a wealth of information about all things to do with cholangiocarcinoma on AMMF’s website at https://ammf.org.uk/treatment-options/

    And you might like to consider joining the Facebook group, ‘Cholangiocarcinoma Support (UK & Europe)’.  This is a private group, for patients, carers and families, so you would need to request to join, but it’s a very active and helpful group where you can ask your questions.

    To join the group, just follow the link and then click the ‘Join Group’ button.

    http://www.facebook.com/groups/cholangiocarcinomasupportukandeurope/

    With kindest regards

    Michaela

     

    • This reply was modified 3 weeks ago by Michaela.

    Please note it is not appropriate for AMMF to give medical advice or recommendations, and all details provided are for information purposes only.

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