CT Scans how frequent?

Tagged: 

This topic contains 6 replies, has 4 voices, and was last updated by  Roz 4 months, 2 weeks ago.

Viewing 7 posts - 1 through 7 (of 7 total)
  • Author
    Posts
  • #13243

    Roz
    Participant

    I would like to know how frequently other people are offered CT scans after resectable intrahepatic cholangiocarcinoma stage1? My last CT scan was done last July 2017, which was 20 months after my surgery up til that point I was scanned 6 monthly. They then said they would not scan me for a year – this does concern me as although scan time is scary it can also be reassuring. Can anyone else share their experience/knowledge as I am concerned that this is being done as their scanning department is extremely overworked as I have had to push for even my 6 monthly scans in the past. Any input you can share will be helpful, thankyou, Roz

    #13253

    Julie_ammf
    Moderator

    Hi Roz

    Welcome to AMMF’s Forum.

    Thank you for sharing your story and I hope some of our supporters will share their experiences with you.

    Kind regards
    Julie

    #13258

    HelenT
    Participant

    Hi Roz

    This was always one of my challenges – I always had to fight to get scans after the first couple, and if I hadn’t fought for them my first recurrence at nearly 5 years post surgery would likely have been much worse.  As it was, chemo and further surgery gave me another 2.5 years, although I am now dealing with yet another, more complicated, recurrence.

    My suggestion to perhaps try quoting the ESMO CC Guidelines which recommend 3 monthly scans for 2 years post surgery, then 6monthly until 5 years then annually.  I would have loved to have had them for some of my conversations with doctors.  I think there is a link from thr AMMF website…

    Best of luck

    Helen

    #13260

    Roz
    Participant

    Hi Helen
    Thankyou so much for your response – it is brilliant to know where to start to find the guidelines for this and I can now quote this to them in my push for more frequent scans. I am so sorry to hear of your recurrence and I wish you well again – keep fighting you are clearly a very strong lady. Can I ask you where you are based?
    With best wishes
    Roz

    #13268

    HelenT
    Participant

    Hi Roz
    I am in Barnstaple in North Devon. Had my surgery in Plymouth as that is our tertiary centre for upper GI cancers.
    What about you?
    Helen x

    #13271

    Helen_ammf
    Moderator

    Dear Helen and Roz

    Many thanks, Helen – you are quite right, ESMO did set some follow-up guidelines in their paper published in September 2016, ‘Biliary cancer: ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up’, which AMMF reviewed for ESMO and which, if I remember correctly, you helped with, providing some valuable input from the patient’s point of view.

    Roz – This is the relevant section from those guidelines:
     

    Follow-up and long-term implications

    Follow-up after potentially curative treatment should consist of 3-monthly visits during the first 2 years after therapy including clinical examination, laboratory investigation (including LFTs and lactate dehydrogenase), tumour markers (carcinoembryonic antigen, CA19-9) and CT scan of the thorax, abdomen and pelvis [IV, A]. Regular visits can be extended to 6-monthly thereafter and prolonged to yearly visits after 5 years of follow-up.
     

    And a link to the full paper: 
    https://doi.org/10.1093/annonc/mdw324

    Best regards to you both

    Helen
     
     

    #13275

    Roz
    Participant

    Thankyou Helen and Helen T
    I have emailed this link to my upper GI nurses in Bristol they say their usual follow up scan procedure is 6 monthly first 2 years (my last scan was at 20 months – not 2 years!) then annually up to 5 years. This doesn’t fall within the ESMO guidelines and she is passing my question to her team and is going to get back to me. I will keep you posted.
    I am based in Warminster in Wiltshire and had my surgery at University hospital Bristol. We do have family in Barnstaple – it’s not that far from here. hope you’ve not been too troubled by the current snow.
    Roz

Viewing 7 posts - 1 through 7 (of 7 total)

You must be logged in to reply to this topic.