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Net disease goblet cell carcinoid tumour

18 Apr 2019 06:42

I was diagnosed with goblet cell carcinoid tumour found in my appendix early February, after handing appendix removed late December, turns out margin line was positive with cells attached to my colon, it’s a 1 in 1 million rare cancer so reaching out to hear off anybody with the same

im having lots of side effects including indigestion, body aches and diarrhoea 

awaiting a date for major surgery in next few weeks to remove part of my colon, ovaries and stomach wall then heated chemo

anyone else who has a NET disease I’d love to hear from you

Net disease goblet cell carcinoid tumour

20 Apr 2019 10:21 in response to carosean1

Hi Carosean, 

I know you've already received a reply on a similar post you made about this the other day, but as it's a rare cancer I just wanted to make you aware of the rare cancer alliance and livingwithnets websites in case you wanted to try connecting with others on there.

There is a new discussion on the forum about NETS that you may want to join in on as well so I'm going to include a link to it here so you can have a look.

I hope this helps Carosean and I wish you all the best with your treatment when the time comes.

Kind regards, 

Steph, Cancer Chat Moderator

Net disease goblet cell carcinoid tumour

1 Jun 2019 07:26 in response to carosean1

Hi Carosean

I was diagnosed with the same cancer February this year following the removal of my appendix. I am having Open Cyto Reductive Surgery with HIPEC at The Christie in June. I don’t really know much about this cancer either. I would like to know the survival rates and whether I will ever be told I am cancer free. A friend of mine also haS NET disease and was told by her doctor they would never be able to confirm she was cancer free. 

What treatment are you having?

i look forward to hearing from you