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Ronny Allan
An awareness post from Ronny Allan
Neuroendocrine Cancer – normally slow but always sneaky – an awareness post from Ronny Allan
There are a lot of scary diseases in this world but some of them are particularly sneaky. One such sneaky disease is the lesser-known type of cancer that infiltrated my body – Neuroendocrine Cancer. Not only is it scary and sneaky, but it’s also cunning, devious, misleading, and double-crossing. It likes nothing better than to play tricks on you. It is the great pretender.
It will grow in your body without you knowing. It finds places to hide, mainly the small intestine, appendix, lungs, stomach, pancreas, rectum, and a host of other places. It can be fiendishly small to avoid being seen. Once it’s established in the primary location (….or locations), it will try to break out via your blood and lymphatic systems. It wants to establish other bases in your mesentery, your liver, your lymph nodes, your bones, and any other place it can get to.
It can often be uncannily quiet, not showing any symptoms. However, sometimes it wants to have fun by over-secreting certain hormones to add or introduce symptoms that mimic many other conditions such as IBS, asthma, abdominal upset, diarrhea, flushing. These are just more tricks up its sleeve, and they are very often a hormonal syndrome produced by cancer or caused by tumours pressing against important vessels or organs.
You will go to your doctor, perhaps many times, to report what looks like routine/regular symptoms. Unfortunately, it’s also really good at tricking most of your doctors. After several visits and despite your concerns, your doctors could become so frustrated that nothing serious is obvious, they might even start to think it’s all in your head. This is exactly what Neuroendocrine Cancer wants, it’s just getting started.
One particular type of NET has a wicked trick up its sleeve. This one will over-secrete a hormone called Serotonin which can often cause fibrosis in your abdominal area, potentially causing obstructions and damage to major organs and blood vessels. It’s not finished though; it will also try to introduce fibrosis to the right side of your heart causing more life-threatening issues. In addition to common symptoms of flushing, this type and others will also make you feel weak, fatigued, in pain, agitated, anxious, dizzy, nauseous, jaundiced, acid reflux, skin irritation, anaemic, lose weight and give you heart palpitations.
It’s a real Witch’s Brew of symptoms and living with it is often not easy but its main trick is to prevent you from being correctly diagnosed and it’s pretty good at it.
The great mimic
Another great hider and pretender are the catecholamine secreting group of NETs called Pheochromocytomas and Paragangliomas – this type of tumour can hide and cause symptoms for years and for some people, it may not be found until an autopsy (see Gen Eisenhower story). You can see from the main symptoms of this type of NET, hiding and pretending are pretty simple. Symptoms include (but are not limited to) headaches, heavy sweating, a rapid heartbeat (tachycardia), high blood pressure, a pale face, feeling or being sick, feeling anxious or panicky, shakiness (tremor). See The Pheo Para Alliance
However, it has a ‘finale’ trick. Neuroendocrine Cancer actually wants to kill you, and if it’s left to plow its relentless path throughout your body, that’s exactly what it will do, slowly but surely.
It’s not just slow and scary, it can also be deadly. Spread the word and help save a life.
If you are suspicious that you have Neuroendocrine Cancer but not yet been formally diagnosed, you may appreciate this article.
Thankfully, due to increased awareness, better imaging techniques, and more education within the healthcare profession, things are improving but there is still so much more to do. The next 10 years will be better improvements when more will be caught early – there is already a trend showing – read more on one of my latest posts “Catch them early, not late“.
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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 never thought that Daddy could get infected with this kind of a ‘spooky’ disease. It was discovered accidentally. Obviously, until then I wasn’t even aware that there was something in this world called ‘Neuroendocrine Tumour’. I was freaking out and there was no way to calm down. I had googled and the more I read the more I cried.. I read of Steve Jobs and Irfan Khan and my heart sank deeper until I tumbled upon your page on FB.
The incredible information and updates you have provided gave me faith and hope !
Daddy was diagnosed at Stage 3B. Post whipple surgery he had clear margins but 11 out of 20 lymph nodes came positive. He is on monthly Octreotide shots. Its been just 3 months since this surgery and my life has changed completely. I cannot lose him so soon. He is 62 and I believe he will live for many many years fighting this out. Thankyou for making me believe this and encouraging myself , him and my family.
Hello Ronny, We are French and we leave in French Polynesia. My husband has neuroendocrine tumor syndrom. Currently diagnostics in December 2017 and started sandostatine analog treatment as of January 2019. Peritoneal sight progression of the deasease. Luthateratherapy will start in February 2020. My question : are you under this therapy in New Zealand ? For him, it’s nearest than France. Thanks for your answer.
Martine Vercauteren
not in NZ, I’m in UK. But in New Zealand please only see Dr Ben Lawrence. Are you on Facebook?
Hi Martine I live in NZ and have NET primary in my small intestine that has matastised to my Liver. I am on 3 weekly Octreotide injections but radiology treatments have been cancelled in NZ due to Covid19. Melbourne Australia also had these treatments but is locked down until further notice.
Are you aware of this?
https://www.rnz.co.nz/news/national/426402/treatment-for-neuroendocrine-cancer-now-available-in-auckland
I had a seizure in January 2018 – my scan showed that I had a tumor in my front brain area – they knew immediately it was cancer. But where was the source – they told me cancer never starts in the brain. It took them a few days and all types of tests, and finally I was diagnosed with Stage 4 Neuroendocrine cancer with a carcinoid tumor. I have had 2 surgeries – during one, found that 8 out of 10 lymph nodes tested positive for cancer – my mammogram tested positive for cancer (neuroendocrine) I have a nodule on my lymph node also.
Ronny, I always appreciate your articles. This one is so clear and to the point. I am interested in the illustration. Is that a photo of an actual NET?
no, it’s just something I found to set the scene for the post
have a check of this. Please note 50% of people in their 50s have at least one nodule in their thyroid, 95% are benign, Goes up to 60% in the 60s and 70% in the 70s. Did they say which type of thyroid cancer?
https://ronnyallan.net/2018/09/07/diagnosising-the-undiagnosed/
I’m newly diagnosed still trying to find primary did all scans up to a octrescan ( found out I have thyroid cancer) but can’t find the net, my oncologist really believes its small intestine and we’re trying to get a petscan but insurance isn’t too thrilled for that so we’ll see, but if not for you I wouldn’t knew 10% of what I do about this cancer so Thank you Ronny I’m so glad I found you and your blog and Facebook pages.
[…] with other cancers or even other sub-types of my own cancer. However,in many ways it’s a deceiving and silent disease and very often people are not diagnosed until a late stage where the disease becomes […]
Your articles are always great reading. My husband has Neuroendocrine tumours had it for fifteen years now. I always look at your posts which makes me feel better about this funny but not so funny disease.
Mine was diagnosed as abdominal migraines in the 90’s. In 2000 I was having a kidney stone and the ER did an ultrasound. They discovered the tumor at that time that was on the tail of the pancreas the size of a tennis ball. It had grown into my spleen and spread to the liver. It was diagnosed as Vipoma which is now called Pnets. Surgery was followed and I did well for five years then increase symptoms. Many surgeries and treatments later I’m still here!
Hi Harry – you can still use the term VIPoma. it’s one of a number of ‘types’ of pNET – there are not many VIPomas although I now seem to know 3 of you! Good luck
Randy. Good for you. Educating. What I’ve been doing since I was dx’d with gastric type 1 neuroendocrine cancer as carcinoids. 20 years and the have been tough. Get the word out there people that Dave Thomas died from NETs. Steve Jobs and Aretha Franklin did NOT die from pancreatic cancer! Thanks
Truth and well written. Pretty much explains it all without sounding morbid.You hit the nail on the head. I have NETS websites (treatment and organisations that I read down to three now and you are included. So much info out there and can be overwhelming but I really like reading your site/blogs (from Australia). David
thanks David – I might use bits of your comment if you don’t mind!
Of course – that is fine Ronny! Keep up the good work and interesting articles.
This was so me, constant problems and doctors visit, we were both sick of each other, but I just knew things weren’t right and kept pushing.
Me too. I hear you. Took me 2 years to be diagnosed correctly which is probably a short time considering all the other stories I ended up insisting on scans and wouldn’t take ‘no’ or ‘blood is fine, no need for another test” for an answer. Have to keep pushing and even now its a push to see a multidisciplinary expert team but getting there. I really know and believe that we, the patient, are the only ones that know our body better than any professional. Glad you pushed! Best, David
Well said.I wish there was a way that it could be diagnosed
It is getting better, just taking a long time to show through. The latest and biggest batch of statistics confirms more people than ever are being diagnosed at an earlier stage.
Insulinoma here. And even more rare, strictly reactive insulinoma. Usually benign. But my primary is actually found in a secondary location. Portacaval lymph nodes. Means possible Mets. Meaning malignancy. Meaning it could be deadly. 8 scans missed it. Finally a 9th saw it. A gallium 68 dotatate pet scan. But being located on an enlarged portal vein makes it very risky even to biopsy. And since I am managing my crazy hyperinsulinemia quite well, they aren’t in any rush to fix me.
good luck with your treatment.
Thank you for such a great article
A spot-on analysis of this horrible, secretive disease.
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Last Weds, in Omaha, my husband received his first dose of Lutathera, LU 177, the radioactive isotope for treatment of PNET. It will not be available commercially until 2018,but he received a “ compassionate dose” from Italy. First time given in Nebraska!
We feel blessed that his newly diagnosed tumor met all the criteria for treatment with this amazing drug.
Expect him out on Halloween with an eerie green glow !
I’m praying for a friendship of mine who fights this cancer. I am fighting multiple myeloma. Another lesser known cancer. Praying they find a cure for NET soon.
It is also tricky in the fact that if found your surgeon will call it benign . . . And you go back to your life yelling “I don’t have cancer” . .. only years later to be found in more locations . . . My dad’s first tumor was found the year I was born . .. His doctor at the time thought it might have been because he’d had a burst appendix (and maybe that is true) . .. But it was a Chemodectoma, a tumor on his aortic . . . Called “benign” so when 10 years later he had mets in his bones, in his ribs, in his hips, in his spine . .. It was not treatable. He died when I was 16 years old. I have his gene mutation SDHB but I haven’t gotten NETs . .. yet . . Mine have disguised themselves as GIST tumors and I was also told “benign” . .. BUT I KNEW to not believe them. I could grow a NET any day .. . Or my body could stick it GISTs (I’ve six current mets) . . . My bottom line is I lost a dad to misdiagnosis . .. I saved myself from the same fate .. . Patients need to read their own PATH reports and doctor’s and surgeon’s notes and ask the researchers question after question. I was again told today by a researcher of SDHB that surgery is my best choice . . . My own oncologist thinks his “chemo” will work . .. And the “phase trial doctors” think their chemo will work . . . Frankly I’ll name my own poison after my next surgery.
Yup, this is why I do what I do, people deserve the truth and that means educating themselves about this cancer
Thank you, Ronny, for your research, your time and your humor.
Is it true if you been having these episodes with flushing high blood pressure high heart rate and diarrhea with elevated CGa and random angry spells when your blood pressure goes into attack but have been having this for at least 10 years I should give up on this idea? I did have my gall bladder out and I had a hysterectomy that had fibroids and was a mess but they didn’t know to look for this. Is it a possibility or give it up?
I don’t usually tell someone to give up. I don’t really understand your question? Are you undiagnosed but think you have NETs?
*Ronny
message received, deleted it OK!