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Ronny Allan
One of the key milestones in my awareness campaigns occurred when I featured as a guest blogger for one of the biggest cancer ‘support’ organisations in the world – Macmillan.
The aim of the blog ‘Sorry I’m not in service’ was actually to highlight the consequences of cancer and its treatment (a Macmillan Campaign message), and to a certain extent to highlight the conflict that can often exist between work and cancer. However, it was also a fantastic opportunity for me to grab the interest of the general population with the word ‘Neuroendocrine’. The response was amazing and on twitter it was one of Macmillan’s most retweeted posts over that period. The Macmillan Facebook post was also very popular and still rising with around 500 likes and around 40 shares so far.
There are some great comments on the post and the one which stuck out most is now the title of this blog article. I’ve always thought the ‘anatomy’ factor was a strong awareness message for Neuroendocrine Cancer and I outlined this in an article I wrote last year entitled ‘The Human Anatomy of Neuroendocrine Cancer’. There are not many cancers that have the anatomical reach of Neuroendocrine Cancer – the ‘suckers’ can indeed get everywhere!
Although there are common areas for Neuroendocrine Cancer to pop up, there are also many rare locations. I was, therefore, both astonished and delighted when the Macmillan Facebook post brought together two people from UK diagnosed with a NET of the nasal cavity, an extremely rare location for any cancer.
Why is the potential distribution of NETs so wide? Neuroendocrine Cancer is nearly always formed in the diffuse neuroendocrine system, which is made up of neuroendocrine cells found in the respiratory and digestive tracts. The respiratory tract includes the bronchial tubes and lungs. The digestive tract starts at the mouth and ends at the rectum. Neuroendocrine cells are also found in the endocrine glands, such as the adrenal glands, pancreas, thyroid, parathyroid, and pituitary. These cells are also found in the ovaries and the testes. However, these ‘little suckers’ have a propensity to spread (metastasize) and can end up in even more obscure sites throughout the body. When you carry out a bit of light research in reputable areas plus taking into account their metastatic tendencies, you end up with a list like this:
Small intestine (small bowel)
Lung (including the pulmonary pleura)
Pancreas
Appendix
Stomach
Large intestine (large bowel or colon)
Rectum
Adrenal Glands
Liver
Gallbladder
Bile Ducts
Kidneys
Spleen
Ovaries
Uterus
Testicles
Prostate
Seminal Vesicle
Parathyroid
Thyroid
Tongue
Cheek
Larynx
Thorax
Bronchus
Oesophagus
Thymus
Pituitary
Pineal
Brain
Breast
Epicardial
Eye – including Retro-orbital (situated or occurring behind the orbit) and the choroid (vascular structure supplying the outer)
Mesentery (keeps the small intestine in place against the abdominal wall)
Abdominal wall
Peritoneum (lining of the abdominal cavity)
Retroperitoneum (behind the Peritoneum)
Nasal Cavity
Skin (Merkel cell)
Bones in general
Sacrum – the large, triangular bone at the base of the spine
Lymph Nodes – mainly in the area of the Mesentery, Peritoneum, Retroperitoneum, Chest Wall; but also in distant locations such as axillary (armpit) and supraclavicular (collar-bone area)
Bladder wall
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Did I miss any? Feel free to add!
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Also Cervix I was diagnosed with Large cell neuroendocrine carcinoma of the cervix, there is also a small cell variant.
All the locations raise my interest, having had pancreatic and adrenal nets found so far, a little tumour in my abdomen wall has been found, it’s being removed next week, the biopsy result could be interesting. Having a gallium pet scan next month too, praying no more are found.
Good luck with the scan and biopsy!
Humorous bone but I have it liver, lungs, ribs, lymph nodes, super clavical a few other places, No primary location determined. Inoperable started sandostatin LAR 30mg monthly shots. I find out next week is it working to slow down growth etc. I thought PRRT was promising from studies I read. Hoping it gets approved in the USA. Ronny thank you so much for sharing your research .
‘Supra’ clavicular – is that lymph nodes supraclavicularfossa (SCF nodes) or the bone? I have left SCF nodes lighting up. You should have PRRT soon which will be approved for inoperable for progressive NETs, pending insurance approval. Can I ask which scan was done to suggest bone mets?
Mine spread to a saliva gland and thyroid x
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Can you state partoid, sublingual or submandibular? Many other tiny salivary glands are in your lips, inside your cheeks, and throughout your mouth and throat.
Mine is also in salivary gland, lungs, liver and lymph nodes.
Hello Ronny! I am so glad you posted this! My husband was diagnosed with GI Net over the last month after a “polyp” was removed during a routine colonoscopy at age 53. He developed GI bleed one week later. I took him the the ER where I work as a nurse, the doctors in the ER looked up his pathology revealing the cancer. I used several of my connections to get him into the oncologist and a surgeon asap but also did a ton of self education for which I am thankful for. Results from his PET scan revealed a tumor behind his eye. I am still worried that this is mets even though the oncologist said “carcinoid doesn’t go there” We were referred to a ophthalmologist and getting an MRI to “make sure there is nothing behind it” (aka cancer) that the oncologist wanted. I was frustrated because I have read several articles on mets to the orbit. This has also made me realize that I want him to go to a specialist in NET caner. I am so frustrated because I thought I was taking him to the best oncologist in the area.
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Yes, I have read at least one comment from a patient with eye involvement, perhaps 2. Can’t remember if they confirmed a NET (better term to use than carcinoid). I’ll try a search but difficult to find sometimes.
Hi, since posting last in January 2016, things have moved on. We asked for a referral to the Royal Free and are now being seen by ~Professor Caplin’s team. 2016 was a year of a second lot of chemotherapy after the lung tumour grew by 20%..We pushed hard for PRRT, even though it is off the Cancer Drug Fund list – removed in November 2015 after over 15 years of use in this country because there was no “evidence” it did any good. 3 shots out of four have been given during 2017 (the drug company is funding it, although I found out via a freedom of information request that 18 patients had been referred to the patient fund for this treatment, but only two were successful. This is nothing short of scandalous) At the moment everything is stable – nothing shrinking, which is a bit worrying, but nothing growing either, which is a relief. Meanwhile we carry on. Joe continues to work – because he wants to and he can as he works from home and he has flexible bosses. And I do too, because that is what makes things normal. We have no desire to spend ludicrous amounts of money going to exotic locations and value the ordinariness of our lives – although that sometimes makes it hard for others to understand just how life changing the diagnosis and the disease itself is – Joe suffers chronic tiredness, especially after treatments. Keep up the good work of informing us of our options. If we don’t know the names of these drugs we don’t know what to badger the consultants for, when this drug stops working!
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Best wishes to Joe for a solution
How long can neuroendocrine patients stay on Everolimus? Can you travel abroad including long haul flight whilst taking this medication?
as far as I know Karen, you can stay on it for some time and I don’t recollect ever seeing anything about travelling abroad. It’s an oral drug so I son’t see why not. Best check with your doctor
I can find very little information on Everolimus, do you believe this is a last ditch attempt at life and if you don’t get along with it then that’s it at the moment. Mine is liver mets 6 months ago had sirt which is shrinking the 2 tumours we aimed at, but 3 more have appeared since the last scan. Had lots of surgery including radicle liver surgery and remainder of the body is stable. How can you make the liver healthier? I have had this disease for 13 years, but in the last 9 have not really had treatment free time, thought sirt would have delivered it!
I am not a member of Facebook and can’t see how well/long people are living with Everolimus on netpatients. What I have been able to read emplies it is used to stop new growth and can shrink tumours, but once you stop the effects seem to stop too. Have you any more interesting information on it?
yes I know what you mean, I don’t think I can actually remember someone by name who’s on the drug. I know there is a facebook group just for the drug but like many it will have turned into a zebra picture sharing site like many of them do (therefore diluting the support they were initially set up for). This link provides actual clinical trial data so will be pretty accurate in terms of side effects. You need to read the aim of the approval which for the US FDA is “for the treatment of adult patients with progressive, well-differentiated non-functional, neuroendocrine tumors (NET) of gastrointestinal (GI) or lung origin with unresectable, locally advanced or metastatic disease”. So for many it could be a first line treatment (i.e. unresectable) given at an early stage. For others it could be given downstream (i.e. progressive). So I don’t necessarily accept that it is a ‘last ditch’ (…..that would be cytotoxic chemo). Yes, you could look at some form of embolization to tackle liver tumors, surgery if possible is always a good option (they took 66% of my liver which kinda grows back (this was ‘debulking surgery’ so not everything came out but it helped). Everywhere I look, it says everolimus is a long term treatment taken for as long as it works. Are you on a somatostatin analogue?
My husband was initially diagnosed with lung cancer that had spread to his liver, spine and lymph nodes. Consequently he was given 8 weeks to live. A subsequent biopsy of his lung tumour revealed it was a NET and he went from 8 weeks life expectancy to 8 years in 8 seconds! Two years on and monthly Lanreotide injections hold the disease in exactly the same position that it was in when it was first discovered. However, a proposed operation on his spine (to try and reduce pain caused by damage to the vertebrae caused by the cancer) was cancelled at the last minute by the anaesthetist who said the tumour on his lung, which measures 7.5 X 8 cm and is inoperable, is pushing into his oesophagus and therefore it was too dangerous. This was very upsetting, as it seems most people’s chances of survival are extended when the cancer is removed surgically. Has anyone else had any similar experience?
Jane, I’m so sorry to hear of your news. Each case can be very different and without knowing all the ins and outs, it’s difficult to comment. NETS are normally slow growing but it’s also true to say that cyto reductive or debulking surgery can potentially offer better outlook but even so, that needs to be weighed up with other factors. This is it a forum site so will not get many people answering. I can understand why you find your situation upsetting. Were you been treated at a NET specialist centre?
Dear Ronny, keep up the great work. You are helping so many of us understand, accept and live. Greater awareness,as always, can lead to earlier diagnosis. I don’t understand how we get NETs ( as compared to example a heavy smoker getting lung cancer) but the sooner someone gets diagnosed , the better quality and longer life one can have. Thank you for making a difference in the world. Hugs to you and yours
Thank you for a great comment
I was diagnosed with carcinoid primary of the gallbladder. Disease free for 13 years and counting!
this is a link to an abstract – although this one was a primary tumour http://www.researchgate.net/publication/51501956_Primary_Atypical_Carcinoid_of_the_Parietal_Pleura_Expressing_KIT
Have you heard of a group called “Loveable Lungoids” ? You are more likey to find someone similar there I suspect. I’ll keep my ear to the ground though.
Hi Ronny, I had a typical in my right lung removed by thoracotomy, but later found to have metastatic disease (positive margins) in 2 of 4 lymph nodes and the parietal pleura (chest wall). I’ve yet to find anyone with the same. My onc is happy to just watch & wait. If you know of anyone in a similar situation I’d love to know!
has anyone heard of any kind of link between insulinoma (pancreas NET) and breast cancer? I had both, during a PET CT to detect the insulinoma (3), invasive lobular mammary carcinoma was found. The docs I’ve seen thus far say there is no correlation yet I’m not so sure…insulinoma is so rare! Maybe it just hasn’t been documented? BTW, I’m so happy to have discovered your blog! Feel quite alone here in beautiful yet remote southern Germany! Thanks.
I’ll have a wee look round Lisa. Nice part of the world! Are you also on my Facebook page?
initial research indicates no direct link but I did note that insulin problems increases the risk of breast cancer (no types mentioned). Are you on Facebook?
Thanks. Interesting, as I certainly had high insulin for years…and yes, I am on Facebook
https://facebook.com/NETCancerBlog is a Facebook page I use to front my blog but I post much more on here (plus easier to contact)
My paraganglomia was discovered in the right atrium of my heart. It’s removal destroyed my tricuspid valve. It’s amazing where these things can pop up!
My hubby was diagnosed with a neuroendocrine carcinoid in his skull wrapped around his carotid artery. It grew out into his ear canal and that is how it was discovered. I haven’t heard of that location in anyone else. Have you?
Wow Cara, I knew someone would add that! Was it a paraganglioma?
Hi Cara – I’m interested in what his official diagnosis was – i..e Carcinoid of the ????? or something else. It’s possible the ear was classed as local spread rather than the actual tumour location. I did read this article http://www.ncbi.nlm.nih.gov/pubmed/3578133 and http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4230142/
There seems to be a strog connection between carcinoid, ears and paraganglioma (a rare NET)
About 3 years ago I hada carcnoid rectum tumor.It was removed
My dr.just found a mass wrapped around my carotid in my brain left side.Waiting for tests to come back.Im really shocked and scared.
Cathy, so sorry to hear you are having new problems. I totally understand why you might be scared and also the shock of another tumour after your experience with a carcinoid 3 years ago. I hope the tests provide the best news possible. From my research, I can see cartoid tumours are extremely slow growing (slower than carcinoid). Hopefully the tests will confirm whether this is carcinoid, non-carcinoid; or that it might be described as concomitant to carcinoid (associated with or following). Let me know how you get on? Good luck and keep in touch. Ronny
Cara this is what Im facing now.Except not in my ear but ear hurts.Still going through tests.I thought I had trigeminal nueralgia….never in a million years did I think this.