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 🙂
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Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.