Translate
Ronny Allan
UPDATE 13TH NOVEMBER 2022 – WORLD NEUROENDOCRINE CANCER DAY MESSAGE FROM OLIVIA
For those that don’t know, Olivia has a part in the new series of “The Crown” commencing November 2022 on Netflix. She took the opportunity during an interview on US television to mention World Neuroendocrine Cancer Day (the name of one my my Facebook pages).
Watch that here. Fast forward to minute 4:20 and she emphasises the point that it was also the cancer Steve Jobs and Aretha had)
https://youtu.be/BskIspQVy0w?t=261
Please note this is not a recommendation to watch this fictional series or take out a Netflix subscription.
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 the set in California when her biopsy result came though confirming the pNET. The doctors, who I believe were from Cedars Sinai even said “It’s not pancreatic cancer, it might be a neuroendocrine tumour”. She finally got surgery in Kings College London. Read the Vogue article here. So glad she finally got it sorted after 4 years (great story inside).
Since writing this, well done to Neuroendocrine Cancer UK, who have managed to persuade Olivia to take part in their awareness and she did their “2point6 challenge” – well done guys! Click here to see Olivia’s video
Good to see her get on with her life and she secured a part as Camilla Parker Bowles in the hit series The Crown, not yet screened but due out later this year. Click the picture to see the news report.
However, this is a confusing and rather unhelpful awareness for Neuroendocrine Cancer. In her defence, she’s representing Pancreatic Cancer as one of their Ambassadors, so it would have been awkward to plug a “different cancer”. She was there to discuss Pancreatic Cancer UKs #TransformLivesPrescribe campaign, helping to get pancreatic enzyme replacement therapy (PERT) for Pancreatic Cancer patients, a very worthy cause.
But the ITV’s banner below is yet another misleading description of a famous person with Neuroendocrine Cancer.
Top 10 Posts & Pages in the last 48 hours (auto updates) (Click the titles to read them)
Thanks for reading.
Personal Facebook. Like this page please.
Blog Facebook. Like this page please.
Awareness Facebook Like this page please.
Sign up for my newsletters – Click Here
My Diagnosis and Treatment History
Check out my online presentations
Check out my WEGO Health Awards
Check out my Glossary of Terms – click here
Please Share this post for Neuroendocrine Cancer awareness and to help another patient
Neuroendocrine Cancer Clinical Trial – Lutetium-177Lu (Satoreotide)
What is Satoreotide? It’s an agonist treatment. i.e. a ‘next generation’ radiologand for Peptide receptor radionuclide therapy (PRRT) or more specifically the radiopharmaceutical that binds
A review of September 2023 on RonnyAllan.NET – Living with Neuroendocrine Cancer
On my website RonnyAllan.NET, September was an interesting month because I had pushed out some blogs before I went on a planned overseas holiday from
Never mind the Bollocks – here’s the cancer
I don’t tend to share some very personal stuff, but this is on the boundary of that rule and there are some important messages to
First and only FDA-cleared, fully automated chromogranin A assay
There has been controversy about the utility of Chromogranin A for many years now. Specialists have been critical about its use but to be fair
Neuroendocrine Cancer: Question, Clarify, Confirm
One of the many observations I make in my private Neuroendocrine Cancer Facebook group is the misunderstandings caused by the use of non-standard terminology combined
Clinical Trial – Lutathera NETTER-2 Important Update
UPDATE – Sep 25th, 2023 – Novartis radioligand therapy Lutathera® demonstrated statistically significant and clinically meaningful progression-free survival in first line advanced gastroenteropancreatic neuroendocrine tumors
Lanreotide: Ipsen injection devices vs generic injection devices
Whenever I get a chance to talk to a pharma involved in somatostatin analogue injection devices, I tell them one very important thing …… “To
Cancer doesn’t take holidays (but I do)
Glen Etive Scotland in 2018 After diagnosis in July 2010, with the exception of a planned holiday to Turkey prior to my ‘big surgery’, holidays
Update from Ronny Allan: No evidence of progressive disease at any site
Update August 2023. Latest CT surveillance scan reports “No evidence of progressive disease at any site”. Very pleased! With incurable but treatable cancers such as
Ive been diagnosed with a Nets Tumor on tail end of Pancreas very small,symptoms flushing and reoccurring rash etc, surgeon won’t Operate because of my age I’m 80years old but a young 80.they are keeping an eye on it, I want them to do the Op.before it gets any worse, and while I’m still well, Please what are your thoughts, I’m so frustrated.Margaret,Australia.
Difficult situation – surgeons always consider age and “do no harm”. Glucagonoma, a functional pNET is mostly found on the tail of the pancreas. There’s a connection with rashes. Have you had any hormone tests for the pancreas? Glucagon is one of them.
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.