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 […]
Another year, another flu shot. Since my cancer diagnosis, I’ve had one each year. To me it’s really important protection even though I know it’s not 100% effective, it’s better than nothing. As someone who lives with metastatic and incurable Neuroendocrine Cancer, I know that my immune system may be compromised and having got this […]
What is PEN-221? Tarveda Therapeutics is discovering and developing a new class of potent and selective precision oncology medicines for the treatment of patients with various solid tumor malignancies. Their strategy includes developing their own proprietary Pentarin miniature conjugates to enhance the effectiveness of promising anti-cancer payloads that have struggled without their selective targeting to […]
What is ONC201? A company called Oncoceutics is developing a novel class of safe and effective cancer therapies called imipridones. Imipridones have a unique three-ring core structure and selectively target G protein-coupled receptors (GPCRs), the largest class of membrane receptors and a common target of approved drugs that are underexploited in oncology. Despite being historically […]
Those who know about the 5 E’s of (so called) carcinoid syndrome will get the meaning of this story straight away. For those unaware of those 5 E’s, read about them here. I sometimes need motivating and it’s really easy to put off doing ‘hard things‘, instead opting for your comfort zone of staying at […]
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.