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Ronny Allan
OPINION. Sometimes when I’m searching for cancer information, I’m presented with a ‘pick-list’ of types which mostly tend to be anatomy based. I do find it annoying when I cannot find my own cancer on the list …..some respectable organisations are just not as up to date as they should be! Neuroendocrine Cancer patients and advocates then have to shout quite loud for recognition and understanding.
One of the key facets of Neuroendocrine Neoplasms (NENs) is that they are not tied to a particular part of the human anatomy. Unlike (say) lung cancer, where the primary is in the lung, or breast cancer where the primary can be found in the breast, NENs arise from a cell type which can be present more or less anywhere in the body. Ignorance of this fact can at best lead to misinformation and confusion – at worst, misdiagnosis and unnecessary treatment for something else (including a different type of cancer in the same location – see below for an example). Take my own diagnosis phase. When I look at the radiology reports produced prior to diagnosis, there were mentions of ‘peri-aortic lymphadenopathy’, ‘mass in the small bowel mesentery’, ‘multiple liver lesions’, ‘retro-peritoneal fibrosis’, ‘extensive lymphadenopathy consistent with lymphoma or metastatic adenocarcinoma’. You can see from the mostly generalised wording, there was some scope for confusion given that 3 potential cancers were mentioned in one paragraph. However the biopsy confirmed NETs. That is what is now documented, that is what I tell people I have and that is what I’m treated for.
The point I’m making here is that certain cancers can appear almost anywhere in the body. Neuroendocrine Cancer is one of those. For example, a Neuroendocrine Tumour which originates in the intestines isn’t Bowel or Colon cancer. Similarly one which originates in the (say) Pancreas or Lung should not be confused with ‘core’ Pancreatic or Lung cancers. These are all histopathologically different cancers to NENs, they arise from different cells and the presentation, testing, treatment (curative or palliative) and prognosis can be very different. At worst, the wrong treatment will shorten the patients life. This is another key point as Neuroendocrine Cancers really need NET specialist medical teams (although there are certain types which I suspect on occasion may require external experts in conjunction with NET specialists).
Take the quite recent case in the news about Wilko Johnson, a well known R&B musician who was told he had Pancreatic Cancer and would die within 10 months. But a friend (a doctor) became curious as to why he wasn’t dead after 10 months and why he wasn’t even feeling ill! It was then discovered he had a NET, i.e. he had a Neuroendocrine rather than exocrine based cancer of the pancreas. So he went from dying to living (albeit living with the consequences of the cancer). Even after his sad death in 2022, the newspapers continue to report he has “Pancreatic Cancer”. Read his amazing story by clicking here.
And then there is the famous Nick Robinson BBC political reporter who is frequently reported to have “Lung Cancer” when in actual fact he has Neuroendocrine Cancer with a Lung primary. Read his story by clicking here.
Dave Thomas the founder of Wendy’s Hamburger Chain had a Neuroendocrine Tumour but many newspaper reports said he died of liver cancer. Whilst they got the detail of the cancer correct, the ‘headline’ location is technically wrong as the liver was a metastasis (a secondary location). Metastases are always given the name of the primary – this is basic cancer parlance. This robs us of vital awareness messages due to the ‘headline reading only population’.
They are not alone, the most famous Neuroendocrine Cancer patient is the late Steve Jobs (the founder of Apple). To this day, it is frequently reported he had “Pancreatic Cancer” when in fact he had a Neuroendocrine Cancer of pancreatic origin. I see this error repeated almost daily in my news alerts plus many other diagnosed patients. Read the Steve Jobs story by clicking here.
However, on 16th August 2018, some might say a person more famous than Jobs, died and it was disclosed she had been diagnosed some years earlier with a Neuroendocrine Tumor of pancreatic origin. Aretha Franklin was initially diagnosed in 2010, and wanted to keep her condition private. However, the media exploded with claims she died of Pancreatic Cancer, although several outlets did mention it was the ‘Neuroendocrine type’ and many left that bit out. Although this left a little door open for Neuroendocrine awareness, the community faces a very difficult task in regaining the high ground and it is looking like ‘Steve Jobs’ all over again as the news went viral. That said, it appears her death certificate does confirm Neuroendocrine Cancer. Read more by clicking here. I still see many newspaper reports about her citing Pancreatic Cancer.
On 13 Jan 2017, it was announced that Siri Co-Founder Dag Kittlaus has Pancreatic Cancer. Although the detail said Pancreatic Neuroendocrine Tumor, it is still a misleading statement and once again, the headline reading population receive only the Pancreatic Cancer message. Ditto with Maria Menounos – click here.
There are huge differences between Pancreatic Cancer and Neuroendocrine Cancer with a pancreatic primary – click here to read more.
The most well-known Neuroendocrine Cancer patients are so famous, thousands of articles were written about them when they died and continue to this day. These articles are ingrained in the bowels of the web and in books – many people will use them as research to reference in their own articles. This issue will continue for many years.
The same thing is now happening with UK celebrities Nick Robinson and Wilko Johnson to a certain extent (although Neuroendocrine is starting to creep into their vocabulary). I have in fact had an online chat with Wilko Johnson who said he would help with Neuroendocrine publicity (not yet seen though). Check out the conversation here:
In the UK, well known actress Olivia Williams was diagnosed with a functional Pancreatic NET (VIPoma) She played Bruce Willis’ wife in the blockbuster Sixth Sense in 1999, also known for her roles in TV dramas such as ITV’s The Halcyon and American science fiction thriller series Counterpart. But she’s now an Ambassador for Pancreatic Cancer UK. Read her story here. However, I’m thankful to Neuroendocrine Cancer UK for bringing her into our arena and she has been supporting Neuroendocrine Cancer awareness.
I’ve also lost count of the number of times I’ve read regional and national patient stories where the headlines mentioned various parts of the anatomy only to find it was a Neuroendocrine Tumour in the detail. Frustratingly, many of these articles are also fundraising for the wrong type of cancer in addition to the misdirected awareness messages. Let me add that this is not an attempt to bash Aretha Franklin, Steve Jobs, Nick Robinson, Wilko Johnson, Dag Kittlaus, Olivia Williams, Maria Menounos or any patient, or any patient advocate organisation who have been recipients of cash raised for a different cancer. I believe patients mostly only say what their doctors say to them in terms of cancer type. For the record, I support many cancer types on my social media channels but I clearly have a bias towards my own cancer type. Consequently I want to see the correct cancer aligned to the correct person. It follows that I want to see the correct research funding go to the correct cancer type. Thankfully we are now seeing this in the Aretha Franklin story
The power of social media will help to dilute the incorrect publishing of celebrities with the wrong cancer types, a particularly disadvantage for Neuroendocrine Cancer. The more stories and articles like this one, the more we can do to counter the onslaught of incorrect articles which are denying our cancer the publicity we deserve. The share button is below.
Disclaimer
I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.
Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional.
Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.
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I think Ruth Bader Ginsburg may also have Neuroendocrine CA – pancreas 1999, colon 2009, lung 2018. Makes you wonder. “Scans show no other cancer”. Curious.
need evidence, there is none yet!
Add Mimi Fariña to this.
Useful to know Tamara. The 5 celebrities here all have issues in the media with the type of cancer used in articles. I don’t think this applies to Mimi as its clear what she what she was diagnosed with. The article isnt really about a list of celebrities diagnosed with NETs, rather, those where the media report something different and I want to set the record straight. Thanks
Does anyone have Zollinger Ellison with primary to liver?
unlikely to get a response on this site Leslie but I can see you’ve joined the group
Ronny, you mention the distinction of NETS in cells as opposed to other cancers such as breast, colon, etc. May I ask, do you know the difference between the endocrine system and neuroendocrine system? I ask as I am in a “Living with Cancer” support group. When I tried to explain that this is a cancer of the neuroendocrine system a woman (who worked as a radiology technician) said that it is a cancer of the glands, that is endocrine. I did respond, “not quite” but could’t speak well to it. Thank you! I really enjoy your blogs.
the neuroendocrine system is an interface between the endocrine and the CNS. Not true to say glands only, Neuroendocrine cells are everywhere. Check out my article “Neuroendocrine – what’s that” https://ronnyallan.com/2015/05/01/neuroendocrine-whats-that/
And this one https://ronnyallan.com/2014/10/16/horrible-hormones/amp/?__twitter_impression=true
Hi Ronny, do you know of any UK NETs specialists with lung-net interest or speciality? Many thanks.
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Great question because I dont know! As far as I’m aware, its better to think ‘centre/MDT’ rather than individual because the NET specialists at each centre will know the best guidance for each type of NET and be engaging the correct specialists to discuss Lung NET patients at MDT reviews (or that is how it should work). Surgeons for example need to come from the ‘Lung’ department, I don’t believe any centre has sufficient Lung patients to justify dedicated lung NET staff (I’m guessing). I happen to know someone who works with Royal Free (he’s a radiologist specialising in lung – see details here https://ronnyallan.com/2016/01/28/innovation-at-royal-free-lung-biopsy-and-radio-frequency-ablation-service/ ). He says he deals with dozens of Lung NET patients treated at Royal Free. I’ll make some enquiries though.
Thanks for such a detailed reply Ronny. Will keep checking for further info. Hard to be ‘rare’ within a rare cancer group already!
Apart from the physical frustrations of this disease ie – in my case IBS and asthma, the mental frustration of lack of public knowlege – which you chronicle admirably in this piece – is the general lack of public knowledge.
Having said that, it is, slowly growing and I was amazed to see an article in the Telegraph last week ….http://www.telegraph.co.uk/health-fitness/body/little-known-cancer-30000-people-living/?WT.mc_id=tmg_share_fb
we need more of this in he mass media.
Thanku Ronnie hope you’re enjoying your holiday.
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Thanks Deanna, I published that document on my Facebook page yesterday, it’s already reached 20000 people!
What is really needed is a relational database to chart presentation progression genotype, phenotype, treatment response etc. etc. for all patients past, present and future. We hoped my husband could outrun this disease, but the more information we got the more we realized that this could not happen because his tumors expressed very little that could be targeted. Everyone was surprised by the course of his disease but the basic mathematics was easy to understand. How to maximize life was much more poorly understood and the importance of relationship and caring can not be underestimated. So often I hear of patients flying from Dr. to Dr. to Dr. Trying to find someone who understands their disease when no center seams to have a comprehensive understanding of many of these patients.
Early comprehensive pathology and imaging needs to be standardized. Experts need to engage with experts and treatment plans need to be tailored to the changing needs of each patient and support systems need to be developed and educated. Who is studying cachexia? How do we eliminate silo’s of understanding? Nobody wants to talk about end of life issues. Healers want to heal and are discouraged and disengaged when they can’t. Caretakers are exhausted by the process. A road map might help.
You’re spot on. More research is required, finding a cure is great but a highly prevalent almost chronic condition would benefit in so many ways. Check out my blog “in the war on cancer, dont forget to win the battle for quality of life”
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I am on an emerging side of this discussion. My father died of SDHB Deficient paraganglioma tumors in 1974 when he was Head of Publications at Walt Disney Studios . . . A St. Joseph Hospital medical record in 1960 read “Extra-Adrenal paraganglioma” a neuroendocrine tumor that he was told benign in 1960 but spread throughout his body, to his spine paralyzing him and to his brain in the end. His only sister then also died of “paraganglioma” . .. I was diagnosised with a GIST tumor in my stomach and told benign but got DNA testing to see if it was possibly related to dad’s cancer and found it was because of the Kreb’s Cycle SDHB gene was mutated. I made sure I found a GIST expert and was asked to take a $100,000 a year medication for life to treat the tumor. I refused because the research said this TKI chemo type of treatment had no success on SDHB GIST tumors. I’m on no treatment but have had four surgeries for “mets” in my liver, peritoneal, paracolic gutter and armpit?!! . . . At the moment I’ve six growing tumors in my liver and peritoneal but I do not have stomach cancer, liver cancer nor peritoneal cancer. AND a research paper just two months ago thinks, Voila! that SDHB Deficient GIST tumors are neuroendocrine . . . I’ve been advocating this for 9 years because of my father’s history. The only “flaw” is that there are still few treatments for NETs. I also am a patient advocate for SDH deficient cancers since we are so small a group and also misdiagnosed and given the wrong medications. A fellow cancer patient and I created our own website to educate patients on the difference and help fund a lab that was willing to try for a mouse model. In the five months we’ve been working on this a mouse model might have been born (it will take some time to see if it lives and if he can grow SDHB Deficient tumors) . . . http://www.SDHcancer.org I also wanted to explain to the world how some cancers can be inherited and wrote a book that was published called, “A Disney Childhood” . . . Roy Disney Jr. died of “stomach cancer” . . . I wonder if it could have been NET but usually stomach is one of the first locations. One of my surgeons I learned after the procedure is a great pancreatic NET surgeon. He’ll go into a patient with symptoms even if they can’t see the tumor on the CT / MRI and look for a pancreatic NET . . . He says he usually finds one! And if he doesn’t the patient can go home the next day . . . Not a big risk of a procedure. Dr. Pommier at OHSU . . . There are some excellent videos I’ve watched of him presenting his NET cancer theory.
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Great story. Pommier is well known in the NET world. He is first class
Did David Bowie have NET cancer? Or is that just a hunch based on the length of time he had cancer?
I’d love to get access to his medical documents! (and some others too)
Thank you for the wonderful work you do and your dedication in spreading the word – I have learned a lot from your blogs
Steve Jobs, Audrey Hepburn, Andy Kaufman, Patrick Swazey, Adam Yauch of the Beastie Boys and many others all died of Neuroendocrine. but it always lists the last place the cancer was when thy died. That is why there is no one in the general public know the cancer. Steve Jobs had liver Cancer till they transplanted someone elses liver in him (Nice to live rich above the law) So now it spread to his pancreas. They list his dead as pancreatic cancer.
Ten years ago -They first listed mine as lung cancer as it grew attached to the lobes of my lung and my heart. Now that it is in my liver will they put liver cancer on my death certificate?
I believe Audrey Hepburn had a Pseudomyxoma Peritonei (PMP), her son is patron for the PMP Foundation. I don’t know anything about Andy Kaufman or Adam Youch – do you have any evidence I could use in a blog? Patrick Swazey is well documented as Pancreatic Cancer and I’m always suspicious about these cases (David Bowie, Alan Rickman, John Hurt) and occasionally search for any mention of Neuroendocrine. Thanks for commenting Christopher.
Hello Ronny. Glad for any information you can share. Diagnosed with NET, primary in ileum with liver lesions, also small tumor in left breast and one lymph node. Have had 3 differing opinions, but have finally started on monthly Octreotide injections.
Very wary about the slash and cut procedures and am hoping to shrink or keep tumors from progressing with Octreotide for now. Any thoughts?
Thanks, Emma
I do have a view on that Emma, will email you soon!
My husband got his call yesterday from the surgeon following investigation MIBG and CT this week Mon-Weds. Four weeks after they told him it had been identified, they have confirmed exactly where it is: small bowel with “some uptake in the lymph nodes and liver.” The bowel resection is set to be done in February at the latest, then the liver issues will be looked into separately by a liver specialist. We still have to write a list of questions to ask, being new on this path I feel like I know so little, but I certainly will be reading plenty before meeting with the surgeon so I can write a list and ask the questions I need to. I shall be revisiting your posts and making notes!
This is positive (you always have to think positive going forwards!). They now know where it is and can plan the treatment properly. Nothing is normal with NETs but his tumours appear to be in the normal locations for a mid-gut NET and this is very similar to my own diagnosis. There is a useful list of questions here: http://www.netpatientfoundation.org/wp-content/uploads/NPF-GUIDE-TO-NETS.pdf Clearly it needs to be tailored for your situation. If you need help, just shout!
Thanks for that link, I will take a look 🙂
I too was diagnosed with midgut tumor, lymph nodes and 28 tumors on liver. They told me I had 5yrs on 3/2/06! I had tumor in sm. Intestines & lymph nodes removed. Then, I had radio frequency ablation to remove 25 of the 28 tumors on liver. I immediately started Octreotide injections monthly. I’m living a good life! New medications and treatments are coming down the line. Just know, if you believe you can beat it, YOU WILL! I think my best advise is to get out what he can and remove ALL STRESS! I grow my own food and can it. But I stay active. I’m here if your husband wants to talk. He can reach me on Facebook under Heather Marcinko, Foster, RI.
Sending prays and good vibes! ❤️❤️❤️
Hang in there… He will be just fine! It’s been 10yrs for me and still going strong! 😘😘😘😇😇😇🙏🏻🙏🏻🙏🏻
thank you for those kind words, it is this sort of feedback which will inspire and motivate me to keep doing what I’m doing! I might drop by Sunset Beach when I visit California on holiday next year!
This is a fantastic albeit troubling piece on carcinoid. The cases that are misdiagnosed are estimated to be 90,000 particularly Irritable Bowel Syndrome & Crohn’s Disease which can be midgut carcinoid. The octreoscan can detect the presence of some rapid cell growth areas but is administered (ideally) along with a urinalysis to confirm presence of serotonin metabolytes. CAT CT PET scans along with full clinical interview screening for flushing, hormonal flux symptoms, carcinoic syndrome symptoms or precursors are all critical components to assessment, treatment planning, & execution of plan/follow up care/treatment. Finding qualified NET/Carcinoid specialists will become easier with people like Ronny who champion this cause. My Aunt died in 2013 from carcinoid. Her liver was covered with 50 tumors. Carcinoid began in her small intestine (primary manifestitation site). Surgery left her with short gut syndrome which resembles wasting syndrome. She was given nano radiation treatment but her cancer was too advanced. Radiation was twenty percent effective. She taught every day. The fall of 2012 would be her last class of students. I hope to embody her teaching spirit to spread faster than carcinoid using rare surfboards. Ronny has been a beacon for our outreach here in Orange County, CA. Thanks Ronny for drafting this piece. It speaks to the need for awareness about Neuroendocrine/carcinoid cancers. Cheers! -Dr. Ray