pNET Archives

15 Jul 2025

5 Comments

Medical Stories – Neuroendocrine Tumors (NETs): Anthony’s Story

InspirationpNET, Type 3c diabetes, Whipple procedure

Great patient story from Anthony and Amy featuring well-known US NET specialist Dr Pamela Kunz. Some of you will have heard me or read one of my posts, emphasising the importance of patient stories. This story encompasses all the strongest areas for awareness but also explains a classic NET journey for others to hear about. It's wonderful to hear the voice of caregiver Amy as these things tend to impact on close family too. I hear that strength come through in her voice and I'm sure Anthony appreciates that. Anthony is a strong too, this guy plays soccer, tennis, he runs…

22 Jan 2025

By Ronny Allan

7 Comments

Surgery for Neuroendocrine Neoplasms – to cut or not to cut?

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentAdvanced neuroendocrine cancer, Benign tumour, Carcinoid syndrome, Carcinoid tumour, Curative surgery, Cytoreductive, Debulking surgery, Desmoplasia, Do no harm, Incurable cancer, Metastatic Neuroendocrine Cancer, Multidisciplinary team (MDT), Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Pancreatic NET (PanNET), Pancreatic pseudocyst, pNET, Prognosis, Quality of LIfe (QoL), Small intestine NET (SI NET), Surgery, Tumor board

Surgery can sometimes be a tough call (......to cut or not to cut?) I see a lot of patients asking very specific surgical questions in my group (and also direct messages to me). Some ask outright "should I get surgery" and that is a very difficult question for anyone to ask, and should be something directed at their own doctors. If they lack trust in their doctors, they should seek a second opinion. All I can do, along with others in my private patient group, is to let these people know about our own experiences. 'To cut or not to…

08 Nov 2024

By Ronny Allan

0 Comments

Pancreatic cysts – something or nothing?

Patient Advocacy, The NET Effect SeriesPancreatic cancer, Pancreatic cyst, Pancreatic NET (PanNET), Pancreatic pseudocyst, pNET

What are cysts? Cysts are sacs or capsules that form in the skin or inside the body. They may contain fluid or semisolid material. Although cysts can appear anywhere in the body, most frequently they live in the skin, ovaries, breasts or kidneys. Most cysts are not cancerous. What are pancreatic cysts? Pancreatic cystic lesions are being found more frequently on cross-sectional imaging studies (e.g. conventional imaging such as CT/MRI/Ultrasound). Although many of these cysts are discovered incidentally in asymptomatic patients, many have a malignant potential. Coupled with the lack of a single diagnostic test for accurate risk stratification and…

24 Oct 2024

By Ronny Allan

5 Comments

Pancreatic Cancer vs Pancreatic Neuroendocrine Neoplasms

AwarenessAdenocarcinoma, Aretha Franklin, Endocrine function (pancreas), Exocrine cells, Hormones, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Pancreatic adenocarcinoma, Pancreatic cancer, pNET

DisclaimerThis information is for education and reassurance only.It is not a substitute for personalised medical advice, diagnosis, or treatment. Tumours arising in the pancreas can come from different cell types and behave in very different ways. Decisions about investigations, surgery, systemic therapy, surveillance, or symptom management must be made by your own specialist team, who understand your full medical history, imaging, pathology, and individual circumstances. Every patient’s situation is unique.The terms “pancreatic cancer” and “pancreatic neuroendocrine neoplasm (NEN)” describe biologically distinct diseases with different behaviours, treatments, and outcomes. The information in this article is designed to support understanding, not to…

03 May 2023

By Ronny Allan

3 Comments

Repeat after me: Maria Menounos has Neuroendocrine Cancer

AwarenessNeuroendocrine tumour (NET), Pancreatic cancer, pNET

Like many people from outside USA, I don't really know anything about Maria Menounos. For those in the same boat, let me confirm she is a very well-known personality in USA. A journalist, television presenter and actress. She has hosted Extra and E! News; she was a TV correspondent for Today, Access Hollywood, and co-hosted the Eurovision Song Contest 2006 in Athens, Greece. She also co-created and is currently CEO of online podcast series network AfterBuzz TV. She is currently signed to WWE where she has served as an ambassador since 2013. She hosts the podcast 'Conversations with Maria Menounos'.…

18 Jul 2019

By Ronny Allan

5 Comments

Pancreatic Neuroendocrine Tumours – to cut or not to cut

TreatmentAdvanced neuroendocrine cancer, ATRX, DAXX, Liquid biopsy, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Pancreatic adenocarcinoma, Pancreatic cancer, Pancreatic NET (PanNET), pNET, Quality of LIfe (QoL), Surgery

Background I've written before about pancreatic NETs (pNETs), much of which has been on the awareness side of my advocacy work, particularly emphasising the differences with core Pancreatic Cancer (adenocarcinoma).Pancreatic NETs are quite difficult to diagnose and treat, some of that difficulty is due to the location of the pancreas and accessibility for surgeons and radiographers. It's not helped by the fact that most pNETs are non-functional, making diagnosis more difficult as there is little clinical suspicion to scan, but also results in more late diagnoses.Although biopsies are possible, mainly via endoscopic ultrasound or laparoscopy, they can still be difficult to…

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