Follow up

I would like to ask what has been the follow up experience for people after their surgery, I did think there may be a yearly scan but my consultant said they don’t “overscan” patients. His comment to me was “if you start to lose weight or have symptoms we would scan you”  I think it would be a bit late by then…..I’m wondering if it depends on which area you live as health care does seem to vary around the country, I shall probably pay for a scan privately for my own peace of mind. 

Another question I would like to ask, has anyone had this operation who also has had their gallbladder removed. I had my gallbladder removed in 2019, then my surgery in 2020, things have settled from the surgery after four endoscopy’s but the problem now is the “bile” dumps I have because I have no gallbladder. Does anyone else have this problem ? When speaking to my gp I’m told to take more medication but that’s not working or dealing with the problem. 

Thanks for reading 

  • Hi Kitty

    Not sure if you ever got any answers to this on a different thread,  but thought I would just bump this one up so that someone who has had the surgery might see it and answer here. 

    Good Luck

    Lowe'

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  • My experience is the same. I didn’t have any scans post surgery. (BTW I’m celebrating 3,000 days post surgery today). Just annual visits to the specialist nurse and dietitian.  They relied on symptoms presenting themselves. 
    The surgeon said that there wasn’t much they could do if they did find anything on a scan. (From a surgical view - quite brutal!)
    Oncology my have a different view of course!

    Counting the days, making every day count.

    Brent

  • Hi, I’ve had lots of views but only two responses…….I’m sure I’m not the only person to have questions about follow up 

  • Hi Brent, thanks for at least replying to me, it seems strange that no one else has any questions or answers re follow up. I wish you many more days to come.

  • Hi, my dad was diagnosed with stage 4 OC in March 21. Started flot chemo in May 21. Then Ivor Lewis Aug 21. He had a CT scan in Jan which was all clear (I think it was just the top half that was scanned). That’s his only scan though & also been told they won’t scan unless symptoms.

    The oncology team call him every 3 months or so to check for symptoms.  I think he is due one more call July, then it goes to yearly calls. He does burp & hiccup - I think from overeating! Which the nurse is aware of but said it’s just part of his digestion & don’t see that as concerning symptoms. (I would feel so much more reassured if he could have a scan). 

    They’ve told him the main symptoms they would look out for are being sick & weight loss.  

    Can’t comment on the gallbladder question I am afraid. 

    Wishing you all the best. 

  • Thanks for replying, I would have thought with such a hard to detect cancer the follow up would be more adequate. I think at least a scan every year post op until five years. It seems follow up for other cancers is more frequent.

    Kind regards

  • Completely agree. Best Wishes 

  • Hi Kitty, it sounds like it’s a regional variation. I have had scans every 6 months since completing my neoadjuvant chemo/radio in April 2019. Granted I also had major surgery in Jan of 2020 so they might have continued 6 monthly as a follow up to that for a little longer. My onc says I can go to yearly after the next one, which I am looking forward to. For context I am in the southeast. Having said that, I also had Hodgkin’s lymphoma in my early twenties and had 6 monthly scans to 5 years after that too, but then I was being treated in the northeast so I honestly don’t know why your standard of care is not to scan you regularly. I cannot answer about the gall bladder as I still have mine. I hope you are doing well.