Morning, I have recently been diagnosed with lung NET so it’s all a bit scary! There are a couple of FB sites that are really great support, you can probably link to them from the Home page. Or search on Facebook.NET Cancer blog. I joined a specific one for Lungs on Nikie recommendation . Have you looked at the downloadable PDF file from this site. It’s brilliant.
Good luck with the research, I’m sure someone else will be along to help
The information available is all very limited and my doctor has explained due to lack of research there’s a lot of questions he can’t answer . Thank you for your reply . What stage are you at in the process ?
Are you under the care of a NET specialist team as I think you will find a lot of information. Where do you live? You can always email the nurses at the netpatientfoundation are ask them to point you in the right direction.
I have just started Chemotherapy and under the “care of” Royal Free Hospital but have not seen them yet.
I would also suggest ronnyallen.com as a great resource on NETs
Hi Hb, sorry to hear about your diagnosis and lack of answers. Back in April they found 2 net tumours within my appendix. Do you know the size of it and whether there has been any spread? I can only talk from my experience.
This reply was modified 6 days, 3 hours ago by Rollipo.
Thank you for responding . I had an appendicitis where the appendix was found to contain a malignant 2.5cm Tumor at grade 4. Octrocide scan and ct scan being done next week and then hemicolectomy. I’m just hoping scans don’t reveal any thing else .