Neuroendocrine Neoplasms (NENs) present complex challenges to diagnosis and treatment. Even in metastatic cases spreading to the liver there are some important differences compared to the more common types of gastrointestinal tumours and pancreatic adenocarcinomas, e.g. their sometimes indolent nature and their ability to oversecrete hormones causing distinct clinical syndromes. Also, the tumours are known […]
This story is about my friend Kirsty. She has metastatic Pheochromocytoma, a type of Neuroendocrine Tumour (NET) of the adrenal glands – (read more here) She has an amazing blog which is not just for Pheochromocytomas or just for Neuroendocrine Cancer patients and supporters. The challenges she has faced, and still facing, are very similar […]
2019 has been quite a year and my blog views are the highest they have ever been. They could have been even higher had I written more articles instead of resting on my laurels after reaching ONE MILLON total views in June of this year. Will try harder in 2020! Things are so hectic I […]
It’s well known that Neuroendocrine Cancer is difficult to detect and as a consequence, many people are not diagnosed until late stages. The difficulty in detection is not just focussed on the complexity of the disease but also the lack of understanding within the medical community who don’t always see sufficient evidence to refer the […]
When I was being told I had an advanced and incurable cancer, I did what most people seem to do in movies ….. I asked “how long do I have“. The Oncologist said ” … perhaps just months“. That must have been quite a shock because for a few moments after that, I heard nothing […]
Well known UK actress Olivia Williams has been diagnosed with a functioning pancreatic NET called a VIPoma. She played Bruce Willis’ wife in the blockbuster Sixth Sense in 1999. She is also known for her roles in TV dramas such as ITV’s The Halcyon and American science fiction thriller series Counterpart. And she was on […]
I’m contacted almost daily by the ‘undiagnosed’ who suspect they have Neuroendocrine Cancer, often because they appear to be displaying the symptoms of one of the associated syndromes and my large internet footprint leads them to me. These are some of my most difficult questions. I’m always very wary of initially agreeing with their assumptions […]
Double Neuroendocrine Cancer is a complex and difficult disease to diagnose, many people struggle with symptoms for some time before they are formally diagnosed. Some continue to struggle after diagnosis. There are many facets that can confound a physician – at diagnosis and beyond. Double Toil If it’s not enough just to have tumours growing […]
Haringey Council in London has signed up to raise awareness of Nets, this needs to be on a bigger platform to explain the difference and help to prevent confusion.
What’s needed is a high level debate on prime-time TV at about pNETs vs pancreatic cancer. If these famous actors and doctors like the Mayo oncologist who has it would come on board then awareness would be raised. Just need a contact in the BBC who knows someone with it to organise it. I live in Australia but I wrote to Boris and the UK Health Minister etc etc re: 2019 World NET Cancer Day but because of Brexit no one responding 🙂
Try again in 6 months! Not sure knowledge is the issue. The issue is doctor parlance which is then mimicked by the media without any context. Doctors are part of the problem.
So frustrating!
A good article, and can totally relate to the ‘I told you I was ill’, but once again they focus gets shifted to the organ type rather than the cancer type, so frustrating…
Oh God, not again! More harm than good can be done by the confusion and lack of rigour. It’s a bit like saying gastroenteritis and dysentery are the same disease. And yes, like macherie48, I think it would be a good idea to contact her. Onwards!
Contact her Ronny. I felt that ‘here we go again confusion’. Thanks for sharing.