Unknown primary with colorectal type, but no primary tumour

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Hello, I have omental metastases which after biopsy were deemed to be of CRC origin; however the colonoscopy could find no primary tumour. I have been treated with palliative chemo, folfox plus pamitumubab, for nearly three years now. So far this has kept things stable, though no shrinkage of tumours.

I wonder if anyone else is in a similar position? I would be really interested to compare notes!   Best wishes.

  • Hi  

    I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

    While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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  • Hello , I have just had a similar diagnosis , HPV + cells in my lymph nodes which they think has come from a CR primary but none found . They have said 12 weeks of chemo scan and then another 12 weeks . How have you coped living with this and having chemo for such a long time? I’m so scared but feel they wouldn’t offer any treatment of the prognosis was hopeless thats what I’m trying to hold on to . 
    Xx