September is Childhood Cancer Awareness Month! The newspapers and social media have been featuring many childhood cancer articles. It’s known that NENs do occur in childhood, particularly those associated with familial/hereditary syndromes including (but not limited to), Multiple Endocrine Neoplasia (MEN), hereditary Pheochromoctyoma/Paraganglioma (PPGL), familial medullary thyroid carcinoma (FMTC); Von-Hippel Lindau (VHL) syndrome. But I also see young people diagnosed with sporadic (not hereditary) appendiceal Neuroendocrine Tumours (NET), most often incidentially found following appendicitis investigations. There are very rare instances of sporadic findings in regular NENs of varying primary types (including Neuroendocrine Carcinomas (NEC)).
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 I do know that over half of childhood cancers are either Acute Leukaemias or Brain Cancer, both of which are frequently in the news. It always breaks my heart when I read stories of children with 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 in NET but it’s always sad to see young people succumb.
As a father and a grandfather, I find it heartbreaking hearing about children with cancer. One story that has stuck with me is about a (then) 8-year-old child who was actually local to me, and I found it by chance in my local newspaper, it also came up in my google alerts. An 8-year-old with Paraganglioma, a quite uncommon type of Neuroendocrine Tumour, had lost an eye due to the location of the tumour. It was absolutely heartbreaking to read but it’s amazing how resilient children can be given the treatment she had to endure. It was even more heartbreaking to also read that Elizabeth’s mother Charlotte, had been diagnosed with Breast Cancer in 2019, as if both didn’t have enough to contend with.
I was so sad to hear that both Elizabeth and her mother Charlotte, both passed away. I don’t want Elizabeth’s death to be forgotten and I dedicate this post to her, but also to her mother.
The feature post below is about Elizabeth Rooney from UK who had a Paraganglioma from age 3 and sadly passed away from the disease age 11, tragically a short time after her mother died from Breast Cancer. So sad.
I originally posted her story on my Facebook page on 3rd May 2020 as she was featured in my local newspapers. I followed here story after that.
Elizabeth Rooney has had a succession of slow growing paragangliomas, the first of which was noticed when she was three years old. Having had two surgeries to remove the tumour behind her eye, the tumour came back a third time meaning that surgeons had to take drastic measures to ensure it wouldn’t return and spread further.
And see the feature story below including the video.
Incidence and Prevalence
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.
Childhood and Adolescent general cancer stats. 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.
Neuroendocrine Tumours. 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.
Although I’m going to focus on hereditary NETs, because that is where most children seem to appear in young adults and children’s NET stories, I also wanted to mention Appendiceal NETs which are more common than hereditary NETs. I definitely see a younger patient population in this category and that is because many Appendiceal NETs are incidentally diagnosed at a much younger age than most other NETs, sometimes this happens to much younger people than you would expect. Most of these cases will be sporadic (not hereditary). I covered this in my “Spotlight on Appendiceal NETs” which you can read by clicking here.
There can be linkages to hereditary NET syndromes. Having a family history of multiple endocrine neoplasia type 1 (MEN1) syndrome can be a risk factor for appendiceal NET. For most, a family history of MEN1 will most likely already be known in young appendiceal NETs but testing should perhaps be considered in these cases in my opinion.
Cases of Children with germline mutations inherited due to a NET hereditary syndrome. You can read about MEN by clicking here.
Pheochromocytoma and Paraganglioma (Pheo/Para)
Although many cases of Pheo/Para are also related to MEN2 (MEN2A or MEN2B), I wanted to cover this as a separate heading. You can read more about Pheo/Para by clicking here. Up to 40% of Pheo/Para cases are said to be hereditary.
Back in 2020, I discovered a survivor story from a then eight-year-old called Elizabeth Rooney who had a Paraganglioma, a type of Neuroendocrine Tumour (NET). I published this on my Facebook page – you can visit that by clicking here. You will find that she had Paraganglioma since age 3.
I was also sad to discover her mother Charlotte also succumbed to breast cancer, she underwent chemotherapy, a mastectomy and radiotherapy in 2019. Just a year after Charlotte had finished her treatment, Elizabeth, then eight, had to have her right eye removed after several operations over many years failed to rid her of her Paraganglioma.
In the same story, Elizabeth Rooney now a 10-year-old, won a Cancer Research UK children and young people’s star award and was one of 15 children to appear in a film about the virtual awards ceremony, after battling cancer four times. As part of the ceremony video, which also featured famous faces including Pixie Lott and Joe Tasker, she shared the story of her journey with the disease. She received proton beam therapy on her 10th birthday.
Sadly, Charlotte’s breast cancer worsened, and she died following a recurrence in her bones. Around the same time, Elizabeth’s disease worsened following hip pain, which turned out to be her cancer returning, news that was delayed by a few days to allow Charlotte’s funeral to be held. Elizabeth was given chemotherapy, she initially responded to that, but the disease was too widespread and heartbreakingly, she also passed within 6 months of her mother.
I found several pictures of Elizabeth and her mother Charlotte – see below.
Read the newspaper stories here:
Brave Elizabeth from Gosport wins award after facing cancer four times | The News (portsmouth.co.uk)
Poole Race for Life team run in memory of mum and daughter bournemouthecho.co.uk
Elizabeth Rooney: Girl documented illness for Stand up for Cancer
Please help spread awareness of childhood cancers and Neuroendocrine Cancer in general by sharing this blog. You will also be generating awareness of Breast Cancer.
Thanks for 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):
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.
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.
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