I’ve written a few times about Pheochromocytomas and Paragangliomas, allegedly rare types of Neuroendocrine Tumour (NET). I’ve also written about various hidden diagnoses of NET cases where they are eventually found in living patients having been ‘hidden’ within other diseases, i.e. misclassified in cancer registries or even not classified as cancer at all. If you read any medical site (including hospitals which treat Pheochromocytoma) you will note statements along the lines of “mostly benign” – so it’s possible the incidence rate is vastly understated on this factor alone.
The other interesting data I found is that many are not discovered until autopsy. Perhaps some people were asymptomatic or maybe they just stoically put up with their symptoms. Perhaps their symptoms were put down to routine illness such as hypertension, maybe imaging was not available/performed, and if it was perhaps nothing was seen. In one example, in a study conducted in Australia and New Zealand, one pheochromocytoma per 2301 autopsies was found. Now, 0.05% doesn’t sound like a big incidence figure but if you look at the population of Australia and New Zealand combined, circa 32 million, using these figures, almost 14,000 people will have a pheochromocytoma potentially hidden from statistics when found after death. If you extrapolate that to the USA, multiply that figure by 10. I accept these figures are crudely calculated but nonetheless a not insignificant output. And when you consider that not every death results in an autopsy, this may be another factor where the incidence of Pheochromocytoma is somewhat understated (…. at the very least in Australia/New Zealand).
The most famous person to be ‘retrospectively’ diagnosed with a Pheochromocytoma is none other than General Dwight D Eisenhower, former President of the USA. I highlight him selfishly because of my love for military history. I’ve read many books about WW2 and his name figures highly in them for good reason, he was the Supreme Commander of Allied forces in Europe and leader of the D-Day invasion. In those books, I did note he had a long-standing blood pressure history (hypertension is one of the cardinal symptoms of a functioning pheochromocytoma) and was also prone to irritability with those around him. His birthday is on 14th October which I have chosen as the day to publish this blog post. An article summarising his health and also confirming a 1.5cm pheochromocytoma at autopsy can be read by Clicking here. There’s also a useful summary of his health which can be read by Clicking here.
Read more about the Invisible NET Patient Population
More information on Pheochromocytoma and Paraganglioma
To learn more about Pheochromocytoma and Paraganglioma, click here for a quick summary.
However, if you wanted in-depth information and access to specialists then I direct you to a wonderful organisation called The Pheo Para Alliance. They also publish information regarding their Pheo/Para Centers of Excellence program.
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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