Awareness Post – Neuroendocrine Cancer in children and adolescents


September is Childhood Cancer Awareness Month!  The newspapers and social media will no doubt be featuring many children’s cancer articles.

I personally cannot begin to imagine what it must be like to be a parent who has a child with cancer. I would just hope my child would be placed into the care and safe custody of experienced medical teams and would be able to get access to the best treatments available. 

In 2020. this case came up in my google alerts and was related to a family who live not far from me in the south of England.  An 8-year-old with Paraganglioma had lost an eye due to the location of the tumour.  It is absolutely heartbreaking to read but it’s amazing how resilient children can be.  The Facebook followers were of course very supportive, and I wish I could make contact with her family to see how she is faring.   The link to my Facebook page can be found by clicking here – please show your support! 

As a group of Cancers, I personally don’t believe Neuroendocrine based Cancer is as rare as we are led to believe, particularly when you include poorly differentiated types such as small cell lung cancer. According to the World Health Organisation (WHO), each year an estimated 400,000 children and adolescents from 0-19 years old develop cancer. Whether that is rare within individual countries, a particular geographical area, or related to a type of cancer, will depend on epidemiological data.  The WHO also confirms that cancer is a leading cause of death for children and adolescents as defined above.  The most common types of childhood cancers include leukemias, brain cancers, lymphomas, and solid tumours, such as neuroblastoma and Wilms tumours.  The first two cancers listed account for more than half of childhood cancers. 

When you look at the average age of a Neuroendocrine Cancer patient, you can be excused for thinking that it’s a disease confined to those of a ‘certain age’. However, there is a pediatric component of the disease with one US study suggesting around 3 per million in NET, which is rare.  I very much suspect it is higher than that as it isn’t clear if neuroblastomas are included (some studies include Neuroblastomas). I did note a study from the Netherlands indicated a rate of 5.4 per million. Additionally, different studies may be using different age groups (in one study, the highest end of the range was 30, in others 19). Plus, the latest Neuroendocrine Neoplasms WHO classification of tumours may encompass a wider grouping since the figures above were published.  Additionally, as the term “NET” is used it may not, therefore, include any poorly differentiated types and data is scarce to confirm.  Clearly, the Neuroendocrine scientific community need to provide the frameworks and criteria for common reporting to get the true epidemiological data. 

The most common primary sites of NET associated with childhood and adolescents would appear to be lung and appendix NETs, the latter appears to be quite commonly found after presenting at the ER with appendicitis pain.  In fact, I do note in my patient group that appendiceal NET patients in general are mostly younger than the average.  The other area where we see children and adolescents is in the familial grouping of Multiple Endocrine Neoplasia (MEN1 and 2a/2b) including Pheochromocytoma/Paraganglioma, Von Hippel–Lindau (VHL) disease, neurofibromatosis (NF) 1 and Carney complex. 

Finally, a plea.  I’d like to include a childhood section on my well-thumbed “Where to find a Neuroendocrine Cancer specialist” blog post, so please pass me your recommendations.  Many thanks in advance. 

Please help spread awareness by sharing this blog.

Thanks for reading


Further reading

I did find some studies to bring to your attention.  I also added a video featuring Dr Sue O’Dorisio (now retired) who is known to be a leading expert in the Pediatric NET world.  I watched it and found it useful.  See the special feature link below.

You may also benefit from reading some articles I used to compile this blog post (but I hope to continue to search and locate more up to date sources):

  1.  I mentioned a study from the Netherlands above – you can read that here:

    Diets IJ, Nagtegaal ID, Loeffen J, de Blaauw I, Waanders E, Hoogerbrugge N, Jongmans MC. Childhood neuroendocrine tumours: a descriptive study revealing clues for genetic predisposition. Br J Cancer. 2017 Jan 17;116(2):163-168. doi: 10.1038/bjc.2016.408. Epub 2016 Dec 13. PMID: 27959889; PMCID: PMC5243994.  Click here to read.

  2. I mentioned Dr Sue O’Dorisio above.  One of her co-authoried articles is linked here. Another is behind a payment wall, but I hope to be able to find it freely available and update this blog later.  Howell, Della L. MD*; O’Dorisio, M. Sue MD, PhD†. Management of Neuroendocrine Tumors in Children, Adolescents, and Young Adults. Journal of Pediatric Hematology / Oncology: May 2012 – Volume 34 – Issue – p S64-S68 doi: 10.1097/MPH.0b013e31824e3885.   Click here to read.
  3. Since Dr O’Dorisio retired, a new pediatric focus is being established at Markey Cancer Center under Dr Aman Chauhan.  Click here to read one of his co-authored studies.


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 as they are not members of the private group or followers of my sites in any official capacity.  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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Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided in the clinical trials document. It’s very important to check the trial inclusion and exclusion criteria before making any contact. 

Inclusion of any trial within this blog should not be taken as a recommendation by Ronny Allan. 


Thanks for reading.


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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

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Read More »   September is Childhood Cancer Awareness Month!  The newspapers and social media will no doubt be featuring many child cancer articles and I notice the UK’s top soap Coronation Street is already featuring such a story. I personally cannot begin to imagine what it must be like to be a parent who has a child with cancer. I would just hope my child would be placed into the care and safe custody of experienced medical teams and would be able to get access to the best treatments available.  I don’t know that much about Childhood cancers but the Cancer Research UK site has a nice summary on this page.  You will note that over half of childhood cancers are either Acute Leukaemias or Brain Cancer. I do know a lot about Neuroendocrine Cancer and although you can develop it at any age, it does tend to be associated with those in later life with many statistics quoting ages in the region of 40 – 60 years at time of diagnosis.  So childhood Neuroendocrine Cancer is uncommon. I recently had my survivor story (in the form of my blog) published by Carcinoid Cancer Foundation.  I was hoping to inspire people through my own story but ended up being inspired myself after discovering a survivor story from an eight year old who had a Neuroendocrine Tumour (NET) of the Appendix.  As a group of Cancers, I personally don’t believe Neuroendocrine based cancer is that rare but according to the survivor story, only 1 in every 7 million children will be diagnosed with a NET ……  now that is rare!  Check out the story here. Children really are resilient and hopefully the medical team have caught this NET early enough for little Emily to lead a normal life going forward! The article not only put a smile on my face but gave me the inspiration to generate this blog. Please help spread awareness by sharing this blog. Thanks for reading Ronny Disclaimer My Diagnosis and Treatment History Follow me on twitter here: Want to receive my blogs by email?  Click on the ‘Follow’ button.

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