I once met some fellow cancer advocates and the conversation turned to what inspired us to ‘do what we do’. When it came to my turn as the only Neuroendocrine Cancer patient, I was already prepared to regurgitate my usual ‘spiel’. As sometimes happens, a listener queried me with the words “Neuroendocrine – what’s that?“. Another focused on ‘Neuro‘ enquiring whether my nervous system or my brain had somehow become cancerous. Deja vu – here we go again! Two days later, I was speaking to one of my online friends who was having similar problems explaining this cancer to family and friends. Again ‘Neuro‘ was proving difficult with the assumption that it’s somehow related to the brain. Technically not far from the truth but context is really important given that most people look at cancer in anatomical terms. As we know this can often lead to incorrect headlines for famous cancer patients.
This is actually a question I get a lot including in my private group. You are free to use this if you’re not quite sure what to explain to family about your #NeuroendocrineCancer, friends and co-workers but don’t want to provide too much detail. I mean people know about ‘cancer’ it’s the ‘neuroendocrine’ which they don’t get.
I know your pain as trying to explain Neuroendocrine is like explaining how to split an atom right! I’m still learning after 15 years.
The main problem is the boundaries and terminology – it’s endless so let’s turn that around. Give them this short response and then deal with any questions they have! Over time you will be better prepared for harder questions.
Here goes:
The neuroendocrine system is made up of a network of cells that are distributed throughout the body. The word neuroendocrine refers to 2 qualities of these cells: they have a similar structure to nerve cells (neuro) and produce hormones just like endocrine cells. Neuroendocrine cells release hormones into the bloodstream in response to chemical signals from other cells or messages from the nervous system. Basically, hormones travel in the bloodstream and makes things happen in another part of the body.
– The main thing to remember to tell them is that unlike Pancreatic, Bowel, Colorectal, Lung, Breast and Prostate Cancer, yours is a cell based cancer and that means it can appear literally anywhere in the body – although the most common locations (primary types) are small intestine, pancreas, rectal, lung, stomach and appendix (there are many other less common places).
– The other key thing to tell them is that most can grow slow and some can grow fast – plus anything in-between – then tell them your grade as soon as you know it. The lower the grade, the less aggressive it should be.
– Another key point is that some can be what is called ‘functional’, so they cause strange symptoms leading to additional comorbidities – this may need additional treatment. This is only really relevant to less than half the patient population but is more common in particular primary types (most commonly small intestine, pancreas, lung).
After that, things are pretty much the same as many other cancers. You get scans and tests, treatment and meetings with doctors. You eventually get some prognostics which can vary from person to person. I’ll leave that for you to decide if you want to add it to your own explanation. But I can give you another 50 things about Neuroendocrine disease …..but that is not what you asked for!
If you wanted more, then read my blog by searching what sort of things interest you. “Neuroendocrine” – what’s that? I didn’t have a clue …… until I was diagnosed with it!
Your next step ……
A lot of people comment on my social media telling me they don’t think there is enough awareness about Neuroendocrine Cancer. But then they don’t share the post on which they made the comment. Just saying …..
RonnyAllan.NET is there to share!
One thing though, if you want to truly understand NET (Neuroendocrine Neoplasms to be precise) then learn about the Heterogeneity of this cancer type – if you do not understand heterogeneity then you will not understand Neuroendocrine Neoplasms. Click on the picture to read more
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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Ronny
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Hi Ronny, thank you for writing these informative pieces. I had my stomach completely removed in 2003 because three small tumors were diagnosed as Carcinoid, and I was told my cancer was gone forever. Then I realized my hematologist routinely checks for chromagranin A. I’ve dealt with the “common” symptoms of Carcinoid syndrome believing they were 1. Dumping syndrome from the gastrectomy 2. Hot flashes because of my age or 3. Low blood sugar these past 15 years. Although I’ve become a member of the NETs Facebook page, I wanted to believe I was done with it and officially a survivor. Yesterday I had a liver biopsy where the doctor said I had up to 10 of these tumors. He told me to be positive about it, that the worst case scenario is that they can now insert something in each tumor to stop them from growing. He said this would be considered not liver cancer but a metastasis from what I had in my stomach. Not sure if this is a good analogy for everyone, but I feel as scared and awkward as I did having my 4th child, 10 years after my 3rd, never having gone thru child birth as all previous were cesarean section and now I was in labor. It’s like skipping a grade a grade in school. I should know things but I don’t. And so much has gone on with the research and knowledge of NETs since 2003.
Should I specifically find a NETs specialist to help me navigate this? Do you have any advice on managing a career while managing your health?
a bit complicated. Are you on facebook groups? I have a private group here where many people ask questions and discuss in a friendly and supportive manner. https://www.facebook.com/groups/157067628225670/
This is great, Ronny. Thanks so much for responding to my question!
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Friend had surgery after pet scan was hot. They removed his spleen walnut size mass and 3 inches of pancreas. Said tissue pancreas cancerous. Told him he had invasive neuroendocrine cancer. Didn’t say the took out lymph nodes. Said the will get with Anderson and Barnes to decide what to do. His next appt . Isn’t until Jan 15 to find out what they decide to do. When they use the word invasive what are they saying. Should he go to different hospital for help. Small town hospital 40 thousand population. He’s asking me what to do. Wish they would have explained more to him. I’m a lung cancer survivor of 18 year . Thank for your help. What a journey you have been on.
I have no idea, perhaps it’s something simple like it was invading the surrounding tissue, i.e. a synonym for ‘cancerous’. Did your friend get a Ki-67 score or ‘Grade’ ? Any sign of metastasis? (normally given as a ‘Stage’). There are many wonderful doctors out there but generally speaking it’s always better to see a Neuroendocrine Specialist. The fact that they have worked out that it is Neuroendocrine is a good sign though. You can find the links to all the specialists in USA within this article – the questions may also be useful for your friend as I believe they cover the whole spectrum of what someone needs to know about the disease (including the doctors who treat it!) https://ronnyallan.com/2017/04/25/diagnosed-with-neuroendocrine-cancer-10-questions-to-ask-your-doctor/
My partner has a tumour in the pancreas. Initially he had cancer markers in the blood but those have gone now. He has had several procedures carried out over the past few months but so far the doctors do not appear to have come up with a diagnosis. Do you think it is possible this is a carcinoid tumour?
Eveyln, of course anything is just about possible with cancer. I suspect you meant to say a Neuroendocrine Tumour. Carcinoid is one type of Neuroendocrine Tumour and whilst it is possible to get a carcinoid tumour in the pancreas, it is an unusual place for a primary.
Which cancer markers are you referring to? Does he have any particular symptoms? Presumably you know there is a tumour because they scanned it?
Thank you for your response to my post. I accept that I should have referred to neuroendocrine tumour rather than carcinoid. I tend to use the two terms interchangeably! My partner has been unwell for several months. Initially he was nauseous, jaundiced and his skin was extremely itchy. The consultant thought his symptoms were probably due to gallstones. However, no stones were found in the scans they carried out. He has now had several internal scans by endoscope. A stent has been fitted in the bile duct and a tumour has been discovered in the pancreas. He was back in hospital earlier this week when biopsies were taken from the pancreas, the liver and the lymph nodes. I wondered about the possibility of the tumour in the pancreas being a neuroendocrine tumour when the consultant told us that there had been cancer markers in earlier blood tests but those markers were no longer there. The reason I wondered about this was because my sister died last year after she was diagnosed with a carcinoid tumour in the small intestine. The doctors had not taken her symptoms seriously because their initial tests had ruled out bowel cancer and it was only when her condition seriously deteriorated that they carried out further tests. Sadly she only lived for two weeks after they finally diagnosed her condition. I hesitate to question the doctors about my partner’s condition as I have no medical training myself and my concerns are based solely on what happened to my sister. However, if my concerns are reasonable then I would raise them with the doctors.
I think you’re right to be cautious as any type of pancreatic cancer is difficult to diagnose. If they have done a biopsy, the biopsy result should confirm the type of tumour and how aggressive or indolent is is? You mentioned the liver and lymph nodes too – are you saying they have also found tumours in those areas?
This is the second time they have taken biopsies of the pancreas and lymph nodes. It is the first time they have taken biopsies of the liver. We hope to get the results next week. So I don’t know if they have found tumours in any area other than the pancreas. I think they are exploring because so far they have not been able to determine the cause of his symptoms.
OK. I hope everything turns out well. It does sound like they are being thorough. Can I ask which country you are in and which hospital?
We live in England. My partner is attending St James’ Hospital in Leeds. I will let you know the outcome of the recent tests. Thanks for your help.
Good luck. Incidentally Dr Alan Anthoney is the head Neuroendocrine guy there but you may be seeing someone in Upper GI as they are not sure of the problem.
Thanks. It’s always good to have a named person in case you need it. As you thought, he is being seen in Upper GI at the moment. From our ‘conversation’ I will ask about the possibility of it being an neuroendocrine tumour if the recent investigations don’t reveal anything conclusive.
Another great blog, a a good explanation to get people started. It also made me giggle a bit, as it’s a bit like trying to explain my job too, it’s just not straightforward!!
[…] Neuroendocrine – what’s that? May 1, 2015 […]
[…] was my first port of call for information and support, closely followed by the blogs of the lovely Ronny Allen and his Facebook page , who is also on this journey and has been very informative and supportive […]
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[…] Neuroendocrine – what’s that? May 1, 2015 […]
Hey, that was a great post. It’s so complicated. When I first found out that I had Neuroendocrine cancer I started eating tons of garlic because it is supposed to be beneficial to those with brain cancer. I’m not sure if it helps US but I thought that it made sense. I will tell you one thing, it is NOT beneficial to your love life! <> Any how, thanks for the info. I will re-blog this. 🙂
I hate garlic Ed (the smell gets my back up every time). Tough choice. Thanks
Yeah, you know…I was swallowing them like pills. I would cut them up and down them with water. I’m not doing that right now.
Currently, I am just staying focused on eating healthy, mostly vegetables and trying to eat from the list I put together. Brassica Family, Allium Family, Mushrooms, Spinach, Berries…..small amounts of meat.
I would like to get back to juicing but, hospital visits, scans, mouth sores from chemo and all that are keeping me too busy.
One thing I’ve done is incorporate an “anti-cancer smoothie” into my family’s diet. It’s 1 pack of frozen organic strawberries, almond milk, a banana and a blender. Whiz it up and you’re done. 🙂
Interesting insight to your diet it shows how different we all are. I cannot look at the brassica family without getting severe wind and very painful bowel cramps. I do take a garlic pill everyday and it reduced the amount of sinus infections I was suffering from. Been in them 20 years now and truly believe that they help prevent infection. I have come off them for brief periods and the sinus problems returned with a vengence. I have assorted berry smoothies milk shakes every day as well.
I was actually juicing raw broccoli, broccoli sprouts and oranges together…..kind of like Chinese food. I was doing it mostly to cleanse my liver but they are a good cancer fighter too as I understand it. http://www.carcinoid-cancer.com/broccoli-sprouts-pack-big-anticancer-punch/
I went through this video made by a doctor and made a list of every vegetable that he named as a cancer fight for every cancer. So, if garlic was named for breast, colon and brain cancer then I put it in my list. It’s my master list….keeps things from getting boring. Here it is if you are interested. http://www.carcinoid-cancer.com/master-list-cancer-fighting-veggies/ Do you have a blog? 🙂
Excellent again but still hard to explain to people. 😀
Reblogged this on Patrícia e Susana.
Excellent, excellent, excellent! I can’t say any more. I am sending this to my family.
Reblogged this on lovehopeandcourage and commented:
Another great post by NET Cancer patient Ronny Allan -Neuroendocrine- what’s that?
Cheers Jackie much appreciated 😊
For any one out there who hasn’t been referred already there are NET centres all over the country. I go to Freeman hospital Newcastle and people come from a 100 mile radius to attend. They have specalist clinic With Dr Perros and a specalist Nurse Sister Angie Williamson with her own clinic. You can ring and ask to speak to her when you have a problem. I understand these clinics are now all over the country and you can find your nearest centre on the Net Foundation Web site under the Research page. It seems a lot of doctors do not know they are out there. They are all associated with multidisciplinary teams. I strongly advise evrryone out there to demand referral to their nearest clinic as they have all the latest knowledge and treatment at their fingertips. I know there are centers at Royal London and Birmingham any other areas you need to look up on the list. Good luck everyone I thought everyone knew about this
Thanks Christine😁
great again thanks Ronny
Very good information. Simply stated and easy to remember. Thanks.
excellent explanation, probably one of the best and easiest one to share with family members.