Carcinoid syndrome

HI, my mom was diagnosed today with a rare cancer called carcinoid syndrome.  Is there anyone else who has been diagnosed with this? I would like to chat to you about diagnosis, treatment, lifestyle changes you’ve had to make and any information you can impart to help us through this scary time in our lives.  Thanks. 

  • Depends which type of NET cancer it is. My uncle had one on his pancreas. I think he had flushing, inability to eat fats and itchy skin. Carcinoid cancer usually causes symptoms depending on where they are. They reckon my uncle had it for years before he began showing symptoms. Not sure if it's a universal treatment used, my uncle was given a drug that slowed it down further.  There's a FB page that deal only with NET cancers, and it's part of the official NET UK organisation. So lots of info on there too.

  • Thank you Prof Baw. We find out today where the mass is and what treatment they are going to advise.  The cancer has spread as it has caused her valve in the right side of the heart to fail causing earlier heart failure which is how we got the diagnosis of the cancer. I am assuming that they will treat the cancer first before addressing the heart issue?  Thank you for the FB suggestion I will take a look.  

  • Hi Lizzie how have things gone?  My Mum was diagnosed with Carcinoid Heart Disease last week.