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Ronny Allan
September is Childhood Cancer Awareness Month! The newspapers and social media will no doubt be featuring many childhood cancer articles. You may not see one about NET though.
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.
It’s been 3 years since I published the post about Elizabeth and was so sad to hear that both Elizabeth and her mother Charlotte, had since passed away (I’m grateful to one of my Facebook followers for finding more information (thank you Jackie). I don’t want Elizabeth’s death to be forgotten and I dedicate this post to her, and 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. I originally posted her story on my Facebook page on 3rd May 2020. Click here to read that original Facebook post.
You can read the feature story below.
What are the risks for children in Neuroendocrine Tumours (NET)?
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 where 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. I covered this in my “Spotlight on Appendiceal NETs” which you can read by clicking here. Having a family history of multiple endocrine neoplasia type 1 (MEN1) syndrome can be a risk factor for appendiceal NET. However, for most, a family history of MEN1 will already be known in young appendiceal NETs.
Most cases of children’s cancer in NET are related to Multiple Endocrine Neoplasia (MEN) Syndromes
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 MEN, particularly 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.
Feature Story
Back in 2020, I discovered a newspaper story about a then eight-year-old called Elizabeth Rooney who was said to have a Paraganglioma, a type of Neuroendocrine Tumour (NET). I published this on my Facebook page – you can visit that by clicking here. You will see 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, 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.
Sadly, Elizabeth’s mother sadly died following a recurrent of Breast Cancer 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.
This is one of the most heartbreaking cancer stories I have ever read. But I wanted to document it here for you as my tribute to Elizabeth and 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
A plea
Please help spread awareness of childhood cancers and Neuroendocrine Cancer in general by sharing this blog. You will also be generating to awareness of Breast Cancer.
Thanks for reading
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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.
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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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This touches my heart as we lost our oldest child to leukemia at the age of 5. She passed away on September 5, 1983. She fought the disease valiantly and with tremendous grace and when I was diagnosed with NETS almost exactly 30 years later, I vowed to follow her example. Thank you for remembering all children with cancer this month.
So sorry to hear about your oldest child 😢
Since I have net and both my children have Stomach Problems like i did befor i was diagnosed they are checked every two years at my onkologist. I am Not taking Any chance s
probably wise Claudia – please let me know how that goes if you don’t mind?
Doing a good job amte