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Vinny 1 month ago

3 replies
14 subscribers
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Hi, my sister is 35. Was told she had a shadow on her liver which we know now to be a NET. After more tests, scans & a biopsy on her liver, it appears the primary NET is in the small intestine (duodenum).

We have an appointment next week for a full prognosis.

Obviously this has shocked the whole family to the core. I just don't know what to expect, it's stage IV so we are all devastated.

Can anyone please give me some hope, some success stories as right now I am really struggling.

Kind Regards

FRESHENER 1 month ago

Hi Vinny

So sorry to hear about your sister and her diagnosis. I have lived with neuroendocrine cancer for quite a while, had surgery and lots of scans and treatments.

I would say to you the best place to get support and read/hear other patient stories and experience (besides MacMillan) is via Neuroendocrine Cancer UK, they have their own website, and also Facebook groups you can request to join. Sending best wishes.

WendyC 1 month ago

Hi Vinny,

Sorry to hear of your sisters diagnosis. If you haven’t already been referred to a Centre of Excellence for the NET please make sure you request it as not all hospitals are aware of the complexities of NETs.

Also join the official Neuroendocrine Cancer UK Facebook page, there are so many people on there going thru the same and some for over 20 years and still going strong.

Sending lots of positive thoughts x

Alboater 1 month ago

Hi vinny so sorry to hear of your sisters diagnoses, i have been diagnosed with neuroendocrine pancreas and liver, have an appointment booked to see oncologist but i was told this form may have a better prognosis and i am afraid of getting my hopes up just yet, hope your sister gets the help and treatment she needs.

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