Husband has GIST, gone from ‘very early stage’ to ‘life limiting and incurable’ within 2 months

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Hi, i feel we’ve gone from 0-100 in a small space of time. Husband (aged 60) had emergency bowel resection at the end of Oct 2023, then a week before Xmas we were told they found GIST in the section they removed. Had to have a CT scan on Xmas Day, so there was no hiding that from our family. Cue waiting a stressful few weeks for results. Phoned twice to try and get results - Mid-Feb told ‘no signs of cancer’ in the CT or PET scan. Great relief, just told they might want to treat with targeted therapy drug as a ‘back up’. Mid March they finally confirmed this, it would be Imatinib daily for 3 years. Ok, not great, but relief that they were offering a ‘mopping up’ as they described. At that appointment I said my husband was still getting some pain in the stomach area, Dr said it might still be the wound recovery, but he’d get another CT scan just to ‘get a baseline’ prior to starting Imatinib. Finally started the drug mid April. Then called in for another appointment a week later to be told the latest scan showed spread to the liver and some surrounding stomach areas, this was now ‘incurable but treatable’ and ‘life limiting’. When asked, the consultant guessed 5-10 years. Obviously a huge shock, and frustration at the speed of growth while we were waiting to just see the consultant and start the drug. Current metastases not operable but we were told other areas often ‘pop up’ in this type of cancer, so other new areas ‘might’ be operable. 
apologies for the length of this, but it all feels crazy. Husband had another scan a week ago, this will see whether Imatinib is doing anything. We find out mid-July.

It’d be lovely just to feel part of a support group who ‘get it’. Thank you. 

  • Hi   and welcome to the Macmillan Community but so sorry to hear about your husband’s diagnosis.

    A cancer diagnosis like this in the family can be such a challenging and stressful time but getting support from others who are dealing with the ‘exact same' support challenges can help you a lot.

    This New to Community area is like our reception desk where we try to direct you to the best part of the Community for you to get support. The Community is actually divided into dedicated Support Groups (Discussion Rooms) and when it comes to the practical and emotional challenges of supporting your husband and indeed yourself you may benefit from joining and posting in our       

    Bowel (colon and rectum) cancer

    Carers only 

    Supporting someone with incurable cancer

    ……. support groups where you will connect with a wide range of members navigating the exact same support challenges.

    To connect with a group click on the “Bold Italic Links” I have created above …… then once the group page opens click in the [ Black - Click to Join - Banner ] that appears at the bottom of the page and this will then confirm that you have joined the group.

    When you are ready……. you can introduce yourself by putting up your very own post by clicking [ + Create new post] or [ + ] in the top right of the group page.

    You can copy and paste the text from this post into your new post.

    It is an emotional time supporting family so you might find this Macmillan information your feelings when someone has cancer helpful as well as this link getting help with your emotions.

    You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

    We also have our Ask an Expert section but do allow 3 working days for a reply.

    Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and support all the family.

    Please do get back to me if you need further help navigating the community.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Thank you for your reply and signposting to resources, I’ll have an explore Slight smile