New diagnosis, really anxious

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Hi. I was going to join this group when my results changed last week, but have been so scared to look at or read anything. 

After some back and forth from September when I suddenly took unwell, an initial mass was found on my liver, the initial diagnosis was high grade diffuse b-cell lymphoma and a biopsy was scheduled to confirm this. It was inconclusive.

Last week after attending a and e due to ongoing symptoms and pain movement a ct scan showed 'significant spread' to my stomach and duodenum.

A further biopsy confirmed liver cancer(I only have the initial results, there are more to come this week).

So far this is all I know, the rest of the results were being looked over at an MDT and we will meet the consultants this week to see what's next.

My heads in a blur, the past few days have dragged by so slowly and my thoughts jump about from one thing to the next.

I'm not googling anything but at the same time, no information at all and waiting around is making me anxious.

Struggling to sleep, and when I do, I just wake in a panic.

Thanks for listening 

  • Hi

    I'm sorry to read that you've just been given a diagnosis of liver cancer which has spread to your stomach and duodenum.

    It's not uncommon to feel like you're struggling when first diagnosed but hopefully you'll get plenty of answers at your meeting with the consultant this week along with a treatment plan.

    I'm not a member of this group but noticed that your post hadn't had any replies yet. I'm sure the other members of the group will be happy to answer any questions you have based on their experiences.

    Do come back and let us know how you get on at your meeting.

    x

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  • Thank you for your message. I think sometimes posting words we've written is a good way of taking the pressure off. It's always nice to get a reply even just to offer encouragement.

    I thought I would update, although things have changed again. At the meeting we found it isn't liver cancer either.

    It is leiomyosarcoma. Unfortunately it has spread further and faster than they'd hoped  and there is nothing they can do. Nothing I can do. Except make use of the time there is left.

    I didn't want to just leave it there without letting you know. 

    Thank you for your message 

    Take care x

  • I'm sorry to read that your diagnosis has changed yet again . It must be very unsettling for you.

    You might like to join the soft tissue sarcoma group where you'll find others who have had a leiomyosarcoma diagnosis. 

    Another group which I think you'd find very supportive is the living with incurable cancer group which is specifically for people with an incurable diagnosis to talk about anything including, as you've said, "making use of the time there is left".

    If this is something that you'd like to do just click on the links I've created and then join and post in the same way as you did here.

    Sending a virtual ((hug))

    Community Champion Badge

    What is a Community Champion?

     "Never regret a day in your life, good days give you happiness, bad days give you experience"