Help! - Neuroendocrine carcinoma

Hi all

I have been reading your posts the on the site for the last couple of weeks since my Dad (63yrs) had an 'informal' diagnosis of pancreatic cancer with lesions on the liver. We have been to see the consultant today following CT scan, blood tests and biopsys of liver and pancreas. He has had very few symptoms to date, just small weight loss and a 'dull on and off' back ache so this was discovered almost by default as he had some investigations for prostate problems in December which led to further investigations. We went today fearing and expecting the worst having some knowledge of outcomes of pancreatic cancer prior to this through my job but then after reading the internet was scared witless as there seemed little hope to cling to.

He has now been diagnosed with neuroendocrine carcinoma ?? The consultant told us this was 'better news' as this is more treatable and we are likely talking in years rather than months in terms of prognosis. In front of us now is more blood test, scans, appointments with oncologists before we really understand what is happening. As most of us do, I have been trawling the internet, have found out that this type of tumor is very rare, seems to be only 2,500 people a year in the US so guessing thats a lost less here in the UK. All the 'good' sites like macmillan, this site, etc have very little info about this type of tumor so i wondered if anyone on here could help as I can see many of you have probably done more research than cancer research uk!!

Thank you for this site and those who post messages, whilst some of it has been very difficult to read over the last couple of weeks it helps to not feel you are the only ones suffering from this awful disease and my heart goes out to all those of you who have come to the end of the journey.

Any advice, suggestions, positive stories about this particular tumour my dad has would be very welcome, I'm guessing there wont be many of you out there.

Kind Regards and my thougths and best wishes are with you all who are reading this site as you wouldn't be here if you wasn't hurting ! x x Sarah

Hi Sarah and I'm sorry to hear about your Dad.

Penny has given you some wonderful practical pointers and I hope you find them helpful. If you decide to read more widely on the internet look for sites with HONCODE certification. The HONCode is trying to prevent misleading and inaccurate medical information on the web and their website can be found at www.hon.ch. They have a search facility where you can look for reputable websites about specific subjects and a checking facility to ensure that a website is certified.

Kind regards

Nicki