Hi Denise,

My name is Andy and I have had my NET for Eleven years and it's difficult for me to explain about every NET .As you say you might not have one so I know it is easy to say but keep calm. Firstly, is you Doctor aware as this is the first priority to discuss. My advice at this point is to contact the below sure where they have a mass of information. Coincidentally,  I received their hand book this afternoon that is excellent What you need to do is contact an in line specialist site as a NET is rare or lesser known cancer and each one is different.  Go to NET PATIENT FOUNDATION. They are a great team that have helped me a lot and gave a wealth of information that will help you and you can call them for advice without any problem. The team us excellent and supportive.

If you are struggling even more come back to me but please visit the expert first

Very best wishes

Andy x 

Hi Dee, 

I agree completely with what Andy has said.

Do contact The Net foundation, we were told by the consultant that this is the site they recommend for Nets patients. 

My husband has pancreatic net with spread, diagnosed December 2015. He doesn't want to know anything, so I am the one who does the reading / research etc. just wanted you to know there is someone here who understands, if you want to chat. 

Best wishes 

xx

Hi Andy, 

Thanks for your message.   I was diagnosed with metastatic pancreatic neuroendocrine tumour which was resected by whipples in feb 2014.   Following the operation I had recurring sepsis and spend most of 2014 in and out of hospital.   I am having monthly lanreotide injections and under the care of the royal free in London.   

My last 2 scan results have been positive and the disease is described as stable however as you know upcoming scans do cause increased anxiety.    I have attempted to go along to some of the support groups however they are normally quite a distance away which makes having family and friends around to talk to as crucial which sadly I don't have.  

Thanks again Dee 

Hi there, 

thanks for your message that must be tough and Diane's as though your husband is in denial as are my family.   I'm the kind of person that wants to know everything about my illness and have been proactive in being referred to the royal free and getting the treatment I need.   I have read lots about nets and want to share with my family however they don't seem really that interested and generally fob me off by telling me not to worry snd minimising any of my worries.  

Thanks for being there.  

Dee 

Hi Dee 

I have NETs in my pancreas and like you my family are in denial I feel alone and that they think because they have never heard of it that it's nothing. 

I'm afraid all the time and always have to put a smile on my face as I'm not aloud to talk about it  to my mum or daughters. 

I have lost friends who I have known for years and the few I do have left only talk when they are down or need help. 

I have so many questions I want to ask but I'm so afraid to ask. I don't know how I should feel I do feel ill most of the time but I keep telling myself it's a bug not the cancer  

take care 

Shell 

Hello Dee,

I have a lot of information for you but cannot post it to you because of the limitataions on postings. I am on a new PRRT treatment etc So i am frustrated i cannot pass it on. Andy/dorro

NET PATIENT FOUNDATION -GREAT TEAM KNOW LOADS ABOUT NETS AND THEY HAVE AN ACE HANDBOOK FOR £7.99. THERY HAVE RECENTLY BEEN GIVEN CENTRE OF EXCELLENCE STATUS ON NETS, CEO CATHERINE BOUVIER. GREAT LADY. SORRY FOR THE CAPITALS BUT I AM KEEN TO GET THE INFORMATION TO YOU. YOU CAN EASILY FIND THEM ON THE SITE AND P[LEASE RING THEM THEY ARE A GREAT TEAM IN THE UK WITH MANY EXPERT CONNECTIONS, NEED ANYMORE LEAVE ME A MESSSAGE.ANDYDORRO. X