Hi , my partner also has a form of NET in the liver, lung and other areas. It’s small cells carcinoma. Don’t google it, it’s terrible. But what our doctor said is that most of the stuff you read online is outdated. Cancer research is very advanced and there are many more medicines available now than what you see on google. My biggest problem is trying to stay away from google actually.

Thank you for the info I’ve been going out of my mind with worry, my partner had a gastro net removed about 8 years ago but it would seem as though it wasn’t completely removed , we have to travel to a hospital in London for confirmation apparently that is the only place that the required scan is available I’m trying to stay positive as we’ve been told that they are small and hopefully slow growing but that is easier said than done as you’ve said googling it is not advisable but I can’t seem to help myself

I fully agree with you there, easier said than done, but we need to have faith in the doctors. Please also consider reaching out for mental health support- I’m finding it useful even with just one session. 

It’s very hard to have faith in anything at the moment, I hope your husband has effective treatment

Hi. I have multiple tumours in my liver. My primary is in the pancreas with mets in my liver. There are many treatment options for neuroendocrine cancers. Please ensure your partner is treated under a Centre of Excellence, lots of good information on the dedicated website NCUK. Information on Google can be overwhelming and not always accurate - my advice is stay away from trying to research at this stage. I am 5 years since initial diagnosis and still going strong! Wishing you a successful journey.

Thank you for your reply, I have looked at the Ncuk website and have seen the different treatments available we are hoping that they will be effective my partner is handling it much better than I am. We have to travel to a hospital in London for a special scan that is only available there is that something you had to do ? It’s been a week since we had a phone call stating they had found lesions on the liver and as my partner had a net removed from her stomach about 10 years ago they think that’s what they’ve found despite being told at the time it had been completely removed. It is good that you are still going strong I wish you many more years

Thank you for your best wishes. You will find that specialist scans and procedures may be carried out only at specific hospitals due to the complex nature of this disease and the equipment available. I am under a hospital in London and travel there for some treatments and PET (dototate) scans, but a lot seem to attend a different specialist hospital in London to the one I go to. I am sure it's very dependant on your current location (I'm in Basingstoke, Hampshire). Routine CT scans and MRIs take place locally.  It's good they have found the lesions, most likely they spread via the blood system at the time of the original net tumour but we're too small to show up on scans. Lots of options for your partner to consider hopefully leading to a positive outcome. Do make notes at appointments as there is a lot of information to digest. Nets are usually very slow growing tumours, this giving specialists time to get diagnosis and treatment correct. All us "Nettie's" are subject to different symptoms/ treatments - seems no two of us are the same!! What works for one may not be appropriate for another. Stay positive - it's the best medicine! Good luck with the scans.x

Thank you for your reply it’s been a very difficult time, we’re in Cornwall so not really sure on the treatment plan yet other than we will have to travel to London for a specialised scan we haven’t even seen the doctor yet we’ve only had the initial call saying that that had found lesions and they look like cancer, I’m finding it extremely difficult to say positive as I lost my dad to cancer in January and my father in law in march so my mind is spinning, it’s good to know that there are treatments available I’m just searching for something positive in all of this…..speaking to you has given a glimmer of hope……

That is really encouraging to hear, my husband also has a large tumour in his liver which affects a lot of things but indeed the choice of hospital matters.