Immunotherapy and Neuroendocrine Neoplasms

Immunotherapy and Neuroendocrine Neoplasms

Updated 24th September 2025. Introduction There's a lot of Immunotherapy stuff out there!  The picture regarding its use in Neuroendocrine Neoplasms is not clear and there is no general roadmap printed.  I first heard of Immunotherapy for NETs following attendance at ENETS 2017 in Barcelona. The presentation that sticks out was one given by Dr Matthew Kulke, a well-known NET Specialist in Boston. My reaction to the presentation was one of 'expectation management' and caution i.e. it's too soon to know if we will get any success and when we will get it. He also hinted that it's more likely…
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The right awareness can lead to speedier diagnoses and save lives

The right awareness can lead to speedier diagnoses and save lives

ORIGINAL POST 20th May 2014.  Refreshed 25th March 2026 I was checking my statistics this morning and found the most viewed post to date was published on the day Stephen Sutton passed away.  I didn't really want to jump onto the Stephen Sutton bandwagon but when I found on the day of his passing that it had taken 6 months to diagnose his bowel cancer, I knew this would be relevant to Neuroendocrine Cancer awareness, particularly important as it's one of the primary aims of my blog.  I'm thinking the top viewing score to date is not because it mentioned…
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A spotlight on Rectal Neuroendocrine Neoplasms

A spotlight on Rectal Neuroendocrine Neoplasms

What are Rectal NENs Rectal Neuroendocrine Neoplasms (NENs) (rNENs) account for approximately 1-2% of all primary cancers in the rectum.  The other main cancer types found in the rectum are regular adenocarcinomas (the vast majority) and some other rare types including Gastrointestinal stromal tumors (GIST) and Lymphoma. The vast majority of rNENs will be well differentiated, i.e. rectal Neuroendocrine Tumours (rNETs) and are mostly indolent tumours treated effectively with surgical procedures if less than 1cm in size. Above that size there are different scenarios. Most will be found incidentally upon presentation of classic rectal symptoms or via colonoscopy screenings and…
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The Invisibility of Appendiceal and Colorectal NETs – do the math

The Invisibility of Appendiceal and Colorectal NETs – do the math

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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Categories, tissues and primary sites – the lost awareness of Neuroendocrine Cancer

Categories, tissues and primary sites – the lost awareness of Neuroendocrine Cancer

BackgroundWhen you look at how cancer is classified and broken down, you can see why Neuroendocrine Neoplasm (the overarching term for Neuroendocrine Tumour and Neuroendocrine Carcinoma) often appears unlisted in certain websites and in certain clinical publications and press releases.  Moreover, it robs awareness and funding for Neuroendocrine Cancer organisations, particularly when celebrities are involved in incorrect labelling. Below, I wanted to cover why that sometimes happens but also why that is undeservedly detrimental to Neuroendocrine Cancer awareness.Cancer CategoriesFrom a histological standpoint, there are hundreds of different cancers, which are grouped into six major categories:CarcinomaSarcomaMyelomaLeukemiaLymphomaMixed TypesYou may be like me and…
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Intra-Operative RadioTheraphy (IORT) for Neuroendocrine Cancer – new landmark treatment launch

New treatments seem to be appearing every month and that is good news for patients.  I have a personal connection to this one though.  In 2014, Chris and I walked along Hadrian's Wall, a 2,000-year-old World Heritage structure in Northern England.  This was part therapy for me but also part fund-raising to help pay for this new treatment which launches today in Southampton General Hospital (UK) which was recently awarded the coveted title of European NET Centre of Excellence (along with Bournemouth and Portsmouth Hospitals).  It is the first ever deployment of this type of treatment in UK and Chris and I were…
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