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Rare cancer- How to deal with the unknown/ scanxiety

LJI
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I am newly diagnosed May 2025 with a rare sarcoma, I have been lucky in having an op to remove the tumour quickly , however the prognosis for this cancer is bleak if it has spread to lungs and I have lots of nodules and have a follow up scan in 3 weeks. I dont feel ill. I am still recovering from the major op and my mood ranges from having faint hope I will be OK for a while,  to thinking I need to be realistic and wind up my affairs now to make it easier for my family when I am gone (for those with this cancer when it has spread it seems there is no/limited treatment options and stats say an average of 9 months) Any advice on how people manage to stay focused on the here and now and not ponder on what is coming in the future?

  • Offline in reply to LJI

    I shall keep my fingers crossed for you.
    I thought I would ask because my retroperiteneal (sp?!) liposarcoma and other things were removed in London but afterwards I was transferred to a local hospital for checkups.

  • Offline in reply to Mary.
    1. Good to hear from you. Unfortunately I found out in January I now have lesions in my lung and spine, in a wierd way now the worst has happened I worry less. Whilst incurable, I am having 6 rounds of chemo in London and so far seems to be responding well. The lesions were also operable so the hope is the ops will be easier after chemo and if it doesn’t appear elsewhere I may remain well for a time. So I am on a very different journey now but doing my best to stick around long enough to at least see my son finish school etc

    i Hope you are well

  • Offline in reply to LJI

    A different journey indeed. However, you are worrying less and seem calmer. Incurable no longer seems to mean the awful thing that it once did. Keep your chin up, and well done.

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