08 Nov 2025
By Ronny Allan
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The Dethroning of Neuroendocrine Neoplasms as an Orphan Disease: US Incidence, Prevalence, and Survival in the 21st Century

The Dethroning of Neuroendocrine Neoplasms as an Orphan Disease: US Incidence, Prevalence, and Survival in the 21st Century

Awareness, Patient Advocacy, , ,
  USA - Prevalence of Neuroendocrine Neoplasms (NENs) breaches the Orphan Disease threshold for the first time (officially) The latest US SEER figures confirm that staggering increase in the prevalence of NENs. In that cross-sectional study which evaluated 145,477 NEN cases in the US, age-adjusted incidence rates increased 5.2-fold between 1975 and 2021, with an annual percentage change of 3% between 2000 and 2020, and the 20-year limited duration prevalence projected in the US population on January 1, 2021, was 243 896. Survival for all NENs improved, including for patients with distant-stage gastrointestinal and pancreatic NENs. And even this figure is…
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07 Nov 2025
By Ronny Allan
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Reframing Neuroendocrine Neoplasms Beyond “Rare”

Reframing Neuroendocrine Neoplasms Beyond “Rare”

Awareness, Patient Advocacy, , , ,
Neuroendocrine neoplasms (NENs) have outgrown the “rare disease” label. e.g. Across the U.S., UK, and Australia, they now rank among the most commonly diagnosed cancers — yet they remain under-recognised in mainstream healthcare circles, often misdiagnosed in primary and secondary care, but continue to be medically complex requiring specialist input which often arrives late. The Global Reality - examples These figures reflect improved diagnostics, rising awareness, and longer survival (thus the prevalence figures) — but they also expose a critical gap: prevalence has increased, but understanding has not appeared to keep up.  Some of  you might add that more specialist…
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27 Nov 2024
By Ronny Allan
20 Comments
The Invisible NET Patient Population 

The Invisible NET Patient Population 

Awareness, , , , , , , , , , ,
First published August 2017 but updated several times UPDATED TO INCUDE PUBLISHED US FIGURES IN 2025 OPINION I found some of the quotes from the recent NET SEER Database study (Dasari et al) very interesting.  The National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) Program is a comprehensive source of population-based information initiated in 1973 that is updated annually. Although the study is US-based, it represents the largest study of Neuroendocrine Neoplasms (NENs) ever recorded and is therefore a good guide to what might be found beyond USA. Almost 7 times the rate recorded in the 1970s. If you…
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25 Feb 2024
By Ronny Allan
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Staging of Neuroendocrine Neoplasms (NENs)

Staging of Neuroendocrine Neoplasms (NENs)

Patient Advocacy, ,
Stage of cancer What is stage?  The extent of a cancer in the body. Staging is usually based on the size of the tumour, whether lymph nodes contain cancer, and whether the cancer has spread from the original site to other parts of the body. What are the stage numbers?  Most types of cancers have 4 stages, numbered from 1 to 4 indicating a rising spread as the number is bigger. Some cancers have a stage 0 but I don't believe this applies to Neuroendocrine Neoplasms (NENs).  Often doctors write the stage down in Roman numerals, so you may see…
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16 Oct 2023
By Ronny Allan
2 Comments
The Big C – a subject nobody wants to talk about

The Big C – a subject nobody wants to talk about

Patient Advocacy, ,
   When I launched my blog with the sole aim of fundraising for a walk along Hadrian's Wall, the first couple of posts I published were all about why Chris and I were doing this 84-mile walk. I had to talk about cancer.  That was difficult enough but after that, it suddenly got really difficult.  What would I tell people .....  I then had a brainwave ..... let's do an A to Z and I started with a short list (some letters had shorter lists than others (Q, J, Z etc).  (p.s. This was not the A to Z Glossary…
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02 Feb 2023
By Ronny Allan
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RonnyAllan.NET – Summary of January 2023 – Ronny Allan – Living with Neuroendocrine Cancer

RonnyAllan.NET – Summary of January 2023 – Ronny Allan – Living with Neuroendocrine Cancer

Newsletters, Patient Advocacy, , , , , , ,
SummaryGreat start to 2023 and I thank those who continue to support my social media and this blog.  I'm keen to hear any suggestions of the sort of thing you would like me to research and publish.The top 10 most-read posts in January are listed below:Paul Hunter Tribute – Snooker champion and Neuroendocrine Cancer patientThe Masters Snooker competition was held in January 2023 and there was a tremendous spike in views at the time of the final. The Masters Trophy was named the Paul Hunter trophy, and this incidentally generates a vast amount of awareness for Neuroendocrine Cancer as most…
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22 Jan 2023
By Ronny Allan
2 Comments
Neuroendocrine tumors are uncommon but definitely not rare

Neuroendocrine tumors are uncommon but definitely not rare

Awareness, Patient Advocacy, , ,
USA finally commits  UK and Australian figures recently confirmed that Neuroendocrine Cancer is the 10th and 7th most common cancer type.  It was great to see this post from the American Society of Clinical Oncology, albeit the USA is joining later than many other countries confirming the worst-kept secret ever - NETs are not rare.  That said, several NET specialists in the USA have been more vocal about this (one example is below), much more so than the cancer organisations (including the ones who represent us) who disappointingly market the rare theme along with the antiquated use of words such…
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10 Oct 2022
By Ronny Allan
0 Comments
Evidence of disease but stable

Evidence of disease but stable

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment, , , ,
Musings from a metastatic NET patient of 15 years plus In every surveillance session I've had since diagnosis, there was always something to report.  Much of it was old stuff that had been there since diagnosis which they are tracking (incidental findings).  However, there is also stuff that they know is almost certainly NET but not doing much and not threatening me.  That sentence alone probably translates to "stable".  After a surveillance event in 2021, I was awarded the accolade of "reassuringly stable", a status which I was happy to accept! Words are very important to cancer patients, some people…
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02 Sep 2021
By Ronny Allan
6 Comments
In the early days, I thought I was going to die

In the early days, I thought I was going to die

Inspiration, Patient Advocacy, Survivorship, , , , , , ,
Opinion.  It can be extremely hard to face a diagnosis of cancer and with that, an uncertain future. After treatment, there's worry about the cancer growing or coming back after a period of stability.   BUT there is also the thought of dying of cancer.  I think as you get older, you tend to begin to accept death is inevitable, or at least that is how I feel today, aged 65.  I was diagnosed at the age of 54 which I guess in cancer terms, is still relatively young. I also suspect this fear must be multiplied in a much younger…
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04 Jan 2021
By Ronny Allan
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The Invisibility of Appendiceal and Colorectal NETs – do the math

The Invisibility of Appendiceal and Colorectal NETs – do the math

Patient Advocacy, , , , , , , , ,
Do the math not the myth In addition to my mountain of evidence against the so-called rarity of Neuroendocrine Neoplasms, a new study from US indicates that many NETs are hidden among colorectal cancer cases in cancer registries. The study reported extraordinary figures of NET cases found when analysing the data.  For years, doctors have been warning about the increasing incidence of colorectal cancer amongst younger people. For that reason, the American Cancer Society recommended people to start screening at a younger age (45 years instead of 50 years) in 2018. This would affect 22 million Americans who now are…
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