Does anyone have experience of more than one neuroendocrine tumour (NET) in the liver?

Hi my partner has been diagnosed with more than one neuroendocrine tumour in her liver and if I’m honest im scared everything I read is bad she has had a net tumour before but that was many years ago in her stomach has anyone had any experience of net’s in the liver ?

Parents
  • 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

Reply
  • 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

Children
  • 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……