Does anyone else have this,or know of someone who has? I am recently diagnosed and starting chemo next week. I am trying to find out where it might spread first,though I realise we are all different. I'm honestly wondering if the "cure" might be worse...
Hey there, I was wondering if anyone has been in a similar situation. My partner had a Whipple's surgery 6 months ago to remove a nonfunctional PNET. The op went well and he has recovered really well (he’s only 34). He was told that the NET was a...
Hi Just wondering if anyone has any experience with carcinoid syndrome. If you have flushing and diarrhea does it not ease until treatment or can it be up and down. Can you have a bout of diarrhea and flushing and then it settle a little or would it...
Hi Everyone I'm 26 and I've had a Neuroparaganglioma diagnosis since 2012. After having a failed surgery in 2013 and three different types of radiotherapy afterwards, most recently in 2022, which were very invasive to my life and education at times...
Hi had anyone got diagnosis of mets to caudate lobe liver? what is your experience with treatment I previously have mets to liver and pancrease that were surgically removed Consultant seems unconcerned as well diffentriated but I previously had...
Hi All, So last week I was diagnosed with Neuroendocrine cancer with liver mets. I have been under CUP (cancer unknown primary) specialist for the past 5 weeks. They are still trying to find my primary (octreotide scan expected to take place early Jan...
I have recently been diagnosed from polyps removed during an endoscopy that looked suspicious. I have been sent to our local hospital 2 days after diagnosis for blood tests, which were frozen and sent to a Lab. From what I have been told they will use...
I’ve just started lanreotide injections and want to dye my hair - has anyone had any bad re actions please?
My nightmare started in June 2023 with being diagnosed with womb cancer. I had a full hysterectomy. But during routine pre op checks I was found to have neuroendocrine tumour of the lung. It has come as a complete shock. Although to the outside world...
Hi. I had a NET in my stomach removed last month. They found another lump in my oesophagus so did biopsies and I had this removed yesterday as well as having my oesophagus dilated with a balloon to stop me choking. The results from my NET removal came...
