Dear Madfisher60. Thank you for messaging me. It is comforting to hear from someone with a similar condition though as I understand it mine didn't metastasize into another organ (eg: liver) so no PRRT required. But this wait and see is stressful as you wonder whether they should be doing something to stop future spread given it did metastasize x 3 micro tumours into my lymph nodes. I was cut wide open this time as a previous surgery left me with incisional hernia and adhesions so the recovery from the NETs surgery has been slow.  Most days I wake up feeling awful. I am on a healthy food and fitness regime but I can't say I feel great. Everyone else in the family who follows my regime look and feel wonderful in days/weeks but I struggle with bloating, cramping, constipation or loose bowels, tension headaches, stomach pins and needles, nausea & mood swings ( get upset easily). If I overdo the exercise I hurt for days where the incision is. The surgeon blames my age ( female therefore menopause) and everyone else says I've had open surgery so don't expect so much! It has been 7 months since the surgery and 12 months since I found out I had NETs. I look forward to the day I start feeling better!! As for the support forum, I reside outside a capital city so the closed online forum sounds good. Thank you for passing this info on and I'm glad you are doing well 8 years post diagnosis 🙂 ... View more