Hello everyone, I am New Zealand based but originally from the UK so thought I would post here as the more global we get with our information sharing the better. I was diagnosed around Christmas 2017 when a small bowel obstruction was removed with a lot of lymph material by an eagle eyed surgeon. Mets to Liver was confirmed by MRI at the same time, I was 57, a helicopter pilot, very avtive with a young family. It was all quite shocking. Tumours were well defined KI67 score was less than 2 and the tumours were very receptive of somatostatin so I have been on monthly shots since the beginning. Tumor load was low but started to progress recently so I have had 4 rounds of PRRT here. It is only recently approved but it is a fantastic system run by Dr Ben Lawrence in Auckland. I had a bit of reduction in tumor size but not as much as Id hoped but no further progression. I feel great, I definitely see that here in NZ we are learning as we go with NETS. I would like to see more aggressive liver therapies offered but may end up traveling for them. Im scared but take heart from all the long term survival stories so stay strong and feel free to reach out.
Hi Kiwibrummy and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
Thanks very much for taking the time to share your experiences with NETs and for offering to chat to anyone who wants to ask any questions, etc.
It would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
