I was diagnosed stage 4 bowel cancer in March and recently had surgery to remove secondaries in my liver. However these have turned out to be NET secondaries! It is well differentiated Grade 1. But they don’t know where the primary is. I have been told...
I had liver resection surgery in October to remove what were thought to be bowel cancer metastases. But it turns out they were neuroendocrine metastases! The primary tumour has been identified in my Small bowel. It is well defined and slow growing G1...
Hello, Yesterday I had PET scan and awaiting appointment for biochemical testing to measure hormone levels. This is after a mass on my adrenal gland was detected following an unrelated ultrasound. More info on my profile. Such an uncertain time waiting...
Hi, happy to share any info if it helps! I was diagnosed after 20 years of pain in 2018 with a primary pancreatic NET which had spread to lymph nodes and liver. Had two major surgeries, chemo, and more recently radiation therapy (PRRT) and been on Lanreotide...
Hi my dad was diagnosed last week with metastatic neuroendocrine tumors and with an unknown primary. It took 3 months of tests at different places to get to the diagnosis. He is now waiting for an appointment with a specialist at the QE hospital in Birmingham...
My partner has just been diagnosed with a Pancreatic Neuroendocrine Tumour (PancNet). While we're relieved that it's not the more aggressive exocrine type, the fact that it's rare and we're not near a specialist treatment centre is a worry. Still more...
Hi there I have just had a diagnosis from a biopsy on a lump in my neck. Am waiting for a CT scan for more information. David
I'm new here and have just been diagnosed this rare cancer of my Pancreas, the surprising thing is that my brother was diagnosed of it on his lung a few years ago and although not cured he is living with it thanks to medication, Is it Hereditary , does...
Hi. Just wondering if anyone has suffered with a rare endocrine cancer called Pheochromacytoma. I've now had it twice. The first time many years ago...a tumour on my adrenal gland and my second more recently with a tumour in my lung. To date I've only...
Hi, I was diagnosed with a tumour in my abdomen and had the tumour removed 3 weeks later, am now in recovery and waiting to get back to ‘normal’, still very tired and brain is not firing properly, but was feeling positive as was told cancer would not...
