A typical carcinoid net's syndrome etc

[Loramay]

After coughing up a lot of phlegm in hospital whilst been treated for a leg ulcer which wouldn't heal. Two very junior doctors still doing their rotation, who I can't thank enough, they took it as a sample and sent me for a chest x ray that showed up 15 plus broken ribs which I had no knowledge of. They sent me for a ct scan which showed up more broken ribs and a nodule in the bottom of my right lung. Early January I had a biopsy, 5 days later I was told was cancer and I was able to have a VATS PROCEDURE at Guy's hospital off I went to have the operation on my birthday and when I came round my consultant said Happy Birthday you are cancer free. Off I went feeling incredibly lucky

5 days later I went down with a vomiting and diarrhoea bug. By the end of the week I was admitted to my local hospital whilst in there I was told that it was Atypical carcinoid and I was very lucky as it was very rare nothing more. After 3 weeks I was discharged 2 days later readmitted by ambulance with blues and two and was told about net's syndrome and I had it but again nothing more and discharged after 8 weeks.

I still have to take anti sickness tablets to eat and imodem I have lost 4 stone and more since the VATS PROCEDURE as well. Does anyone on here know more than what is written on cancer research websites. I know that they can spread because they don't use the lymph system so can possibly travel to another lobe or pancreas, liver which was checked, gastric tract.

Has anyone had this in the lung which is rare and even rarer to be atypical and can help me please . Sorry it is so long.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Loramay

Welcome to the forum where we hope you will find support and encouragement. It sounds like you have quite a journey with this and sorry to hear that you still have symptoms.

The NET Foundation (Neuroendocrine Tumour) patient foundation website is excellent and provides a host of very useful information; netpatientfoundation.org/ab...

Their helpline number is 0800 434 6476

This link will take you directly to lung NET:

netpatientfoundation.org/?s...

It provides all the latest news and research on Neuroendocrine tumours, along with information booklets and support groups that may be in your local area.

This link will take you to clinical trials that are being conducted for lung NETS:

clinicaltrials.gov/ct2/resu...

and from Cancer Research UK

cancerresearchuk.org/about-...

Other websites that provide the most up to date information on Neuroendocrine tumours are Cancer Research UK: cancerresearchuk.org/about-...

Macmillan Support: macmillan.org.uk/informatio...

and NHS

nhsinform.scot/illnesses-an...

You may find this link from health unlocked on the discussion of Neuroendocrine Tumours:

healthunlocked.com/neuroend...

If you wish to discuss anything you can call our Freephone nurse led helpline number on 0800 358 7200

All the very best

The Roy Castle Support Team

[Loramay in reply to RoyCastleHelpline]

Sorry about the delay in getting back to you but another visit to hospital got in the way. Thanks for the information I'm hoping to find out more in the next few days