No primary tumour

Sashiko1b2042 1 month ago

4 replies
165 subscribers
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Hello, I wonder if anyone else here has had a similar experience? I have omental metastases which were biopsied and determined to be of colorectal origin; however the colonoscopy could find no primary tumour. I am therefore on palliative chemo folinic acid (with pamitumubab) which seems to be keeping things stable so far, more than 2.5 years in.

I'd be very interested to hear from anyone else in a similar position.......it seems to be fairly rare. Thank you.

jane2511 1 month ago

Hi Sashiko

I am sorry that you have not yet had a reply to your question, but sometimes it can just take a little longer for someone in a similar position to see it and respond. By me replying it will bump your post and hopefully it will bring it to someone's attention.

I am sorry to hear of your omental metastases and it does seem rare (although I know it can happen) where they can not find a primary tumour.

I am pleased that you chemotherapy is keeping things stable for you and I hope that any side effects that you are having are manageable.

If you want to talk things through with one of the nurses while you are waiting for someone to reply, please do give the Support Line a call. They are there from 8am-8pm daily.

Jane

Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

KimLondon 1 month ago

Hi Sashiko, I have not had this myself but I know my Oncologist works in this area as well as Upper GI/ Colorectal. I believe this is known as Cancer of Unknown Primary and abbreviated to CUP. I am sure a CUP specialist would be very interested in seeing you and may have some more ideas. It's very good news that the treatment has kept you stable and it sounds like therefore your team have identified a good treatment for you- those drugs are used on colorectal cancer so that does also suggest they were on the right path doesn't it. So yes depending where you are you want to find a CUP specialist- though I'm sure they could do remote appointments too. Do message if you want to. As I say really glad you have a good treatment. Best

Sashiko1b2042 1 month ago in reply to jane2511

Thank you, Jane, I have now had one reply..,....

Best wishes

Sashiko1b2042 1 month ago in reply to KimLondon

Hello, Kim, many thanks for that. Yes indeed, I am probably labelled CUP with a CRC profile. My team have given me the best and most appropriate treatment; incidentally the holiday limits for pamitumubab were lifted a little while ago after lobbying, so it's now possible to stop and start at will (as far as I understand).

I would still really like to hear from anyone else in a similar situation. CUP can be difficult to treat unless the organ of origin can be diagnosed, in which case usually palliative chemo is recommended. So I am relatively fortunate.

Thanks again for replying, Kim. Good luck with your own treatment.