Hello andydorro1,

Thanks for posting and thanks for offering to help those here that may come with similar stories and in need of help, I'm sure your experience will be useful to many here.

With best wishes,

Renata, Cancer Chat Moderator

No problem.

If i can help?

Kind Regards

andydorro1

Hello there , 

ive recently been diagnosed with neuroendocrine cancer .. from 2nd January when I was asked to go for blood tests following a CT scan , to the 16th where they have taken away half my large bowel and a significant amount of my small bowel . My bowel apparently was blocked and they couldn’t get all of the cancer out as removing it all would have been incompatible with life . I’ve been left in limbo ... what happens next ? I’ve been told it will be chemo but it has all happened so fast ... what can I expect next ? ? 

Hi Andy, 

I would love you help as I am feeling very low and have been avoiding looking on the internet about it as it scares me its taken me over a year just to join this site. 

Dear Andy, 

i had a very close friend. His name was Mark and he was diagnosed at age 27 with stage 3 colon cancer. On top of this cancer he developed neuroendocrine cancer and he died in February 2017. He was 29 years old. Is it common for these two cancers to run together like this or no? All I know is it was very aggressive and once they discovered this second cancer he only lived about six months. Thank God you have survived so long with it. Blessings for many more years. 

— Kristin  

Hi there, 

I was requested by hospital to come for blood tests on 2nd Jan . On the 4th a consultant secretary rang me with an appoint ment to see  a surgeon. I was oeprated on on the 16th and had bth small and large bowel removed due to NET. Unfortunately they couldnt remove it all they also found multiple liver and perineal metastases . My results have come back high for carcinoid syndrome .Apparently chemo next  HELP... what can I expect ??

Ki

Dont be scared go on the recognised sites,

NET PATIENT FOUNDATION

CANCER RESEARCH 

NHS

McMilllan 

You tube search for Proffesor Caplin he is the best il the world and works in London on the NHS, London Royal Free,

You will get all the information you need.

On a practical basis i have been doing this for 15 yrs so if i can help. iam here. Good Hunting xx

High carcinoid syndrome can be dealt with it means your tumours are producing too many hormones. chemo is good but maybe hard but you are still on track but get your Doctor to refer you to a NET Doctor asap. These cancers are complex and nasty but in many cases you can get extra survival.

NET PATIENT FOUNDATION on line.

YOU TUBE- Searcg for Prof Caplin, He is excellent along with his team and he has a Greek friend who should also come up on your search.

Good Luck

Andy xx

I wanted to know  is there anyone out there that needs some information on Neuroendocrine Tumours.

My experience is vast as i have had the cancer for 15 years and can help people if required in this area. No disrespect to others but this is a complex rare cancer were you need to know step by step in order to help yourself and with quick interervention.

That is all i wish to say is that i am here if you need advice. This refers to especially to newly diagnosed or people with a longer term who just has a question for me. I have experience of PRRT treatment. Thank you all.

NET PATIENT FOUNDATION on line. Excellent site

Nasty complex horrible cancers. If you have a chance get your Doctor to refer you to a NET DOCTOR asap

Pro Caplin on you tube excellent.