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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...
I was told in December 22 I had spinal compression, during the operation they took a biopsy and Feb 23 was told I had neuroendocrine small cell metastatic prostate it had spred to the whole of my spine, my ribs, my right shoulder and pelvic bone and also...
Hello all I am new to posting on this forum but have been reading many posts and digesting all the information and advice. So I am 51 years old and was diagnosed with a Carcinoid lung tumour in January this year. It was a massive shock to the system...
Hi everyone. My husband has recently been diagnosed with neuroendocrine tumour in his abdomen. We have the first specialist appointment tomorrow at the hospital to talk about treatment, next steps. Any advice as we are both very anxious (more me than...
Hello, everyone. I’m new here, I was searching for a forum to find some support for my son’s new diagnosis. It’s been a crazy road that has lead to an unexpected, scary, and somewhat confusing diagnosis of a Neuroendocrine tumor…in his middle ear. He...
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...
Hello, this is my first post and I'm not quite sure what to say. I've been having trouble getting the care I need post op, it almost feels like I'm not being taken seriously, so I wondered if others had experienced anything similar. im 33 F, diagnosed...
Hello all. just recently been told by consultant that shadow in my lung is suspected “well differentiated carcinoid” just at entrance to right lung. Discovered by chance as coughed up blood out of the blue and got CT scan. PET scan has shown no other...
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...
