Just back from a nice relaxing holiday in Tenerife. I don’t know about you but when overseas I find myself looking for ‘hotspots’ everywhere I go……. I don’t mean trendy entertainment venues, I’m talking about the modern phenomenon known as a WiFi signal! I also mean free and open connections. Even recent price reductions within Europe did not tempt me to use ‘data’ overseas and I didn’t even want to take advantage of the £2 per day upgrade of my mobile phone account which would give me access to my minutes/MBs overseas on a temporary basis. I just look for free WiFi and I also make a point of turning off ‘data’ on my phone before leaving the country to avoid expensive mistakes. No Scottish jokes please, I’m just frugal 🙂
My hotspot finding in Tenerife was relatively successful – it isn’t rocket science. However, that’s the second time in the last month I’ve been involved in ‘finding hotspots’. The first was explained in my blog posts: Results. and: Nuclear scans. As a reminder, the Octreotide Scan is currently the gold standard for ‘finding hotspots‘ in NET patients, although newer techniques and binding agents are coming on line which have greater efficiency (e.g. Ga-68 DOTATATE PET/CT). A hotspot was identified in 2010 (amongst others) in the area of my neck – specifically in the left Supraclavicular Fossa (SCF) lymph nodes (collar bone area). There was also some take-up in my left axillary nodes (armpit). The armpit nodes were palpable and therefore resected in Feb 2012 as a follow on from major surgery in 2010 and 2011. During the same procedure, the surgeon also opened me up in the area of the left SCF nodes and removed 5 of them. However, all of these 5 nodes tested negative and given the findings (and the nature) of the Octreotide scan, this was unusual (to me). Read about these hotspots click here.
I met with my Consultant before going on holiday and he explained my test results were all good but that there was still a ‘hotspot’ showing up on the Octreotide scan in my neck. The scanning machine is newer technology than the one used in my previous Octreotide scans. It also has a built-in CT (SPECT) scanner and therefore the ability to overlay multiple types of scans. In fact the radiologist is reporting the neck hotspot location as the thyroid rather than the left SCF lymph nodes indicated in the two previous scans in 2010 and 2011. All very confusing at the time but it has since been confirmed as two separate problems, they thyroid is just a nodule and not NET
Whatever is going on in my neck area has been there for at least 4 years but as my biochemistry results are good, I guess it’s not life threatening. Nonetheless, 3 separate Octreotide scans have lit up an area in my neck indicating there is a risk which needs to be managed. My Consultant has been investigating whilst I was on holiday, so will provide updates in future blogs.
Ronny
2026. Things have moved on since I wrote t his in 2014!
- SYHX2008: A New Self‑Injectable subcutaneous Long‑acting Octreotide on the Horizon for NETs
Disclaimer: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… Read more: SYHX2008: A New Self‑Injectable subcutaneous Long‑acting Octreotide on the Horizon for NETs - Small tumours – big impact
In oncology, a “small” tumour generally refers to a mass that is 2cm or less in diameter. Tumours under 1 cm are often described as “very small”. These small growths typically fall into the earliest clinical staging categories (such as T1) where they are highly localized and have not spread beyond nearby structures. Tumor Size… Read more: Small tumours – big impact - The Invisibility of Neuroendocrine Tumours (NET) – an awareness post by Ronny Allan
“Invisible cancer” typically refers to malignancies that evade early detection or disguise themselves as other common, non-life-threatening ailments. This term is very frequently associated with Neuroendocrine Tumours which are very often difficult to spot on standard imaging and blood tests. When I was diagnosed, I didn’t even feel ill. It was therefore a bit of… Read more: The Invisibility of Neuroendocrine Tumours (NET) – an awareness post by Ronny Allan - Clinical Study from the Australasian Gastro-Intestinal Trials Group (AGITG) STOPNET
Disclaimer: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… Read more: Clinical Study from the Australasian Gastro-Intestinal Trials Group (AGITG) STOPNET - Spotlight on Ovarian Neuroendocrine Neoplasms
Disclaimer: The information in this Spotlight is provided for general information and education only. It is not intended to replace the advice of a qualified healthcare professional, nor to be used for diagnosis or treatment of any medical condition. Always discuss your individual situation, symptoms, test results, and treatment options with your own doctor… Read more: Spotlight on Ovarian Neuroendocrine Neoplasms - Ronny Allan’s Newsletter covering May 2026
Just back from holiday thus why the late publication! Summary of May 2026 on RonnyAllan.NET I think the main story of May is similar to March and April which was a strong blog performance. Other key targets met were the two main primary NET types (small intestine and pancreas) and one not so common(thymus) have finally been… Read more: Ronny Allan’s Newsletter covering May 2026 - Fat‑Soluble Vitamins in Neuroendocrine Tumours (NETs): Why Deficiency Happens and Who Is Most at Risk
This blog provides general educational information only. It does not offer medical advice, diagnosis, or treatment. Patients should always consult their clinical team for personalised guidance. Introduction: What Are Fat‑Soluble Vitamins? Fat‑soluble vitamins — A, D, E and K — are nutrients that can only be absorbed when dietary fat is digested properly. They… Read more: Fat‑Soluble Vitamins in Neuroendocrine Tumours (NETs): Why Deficiency Happens and Who Is Most at Risk - Neuroendocrine Tumours (NETs) – A Spotlight on Vitamin B9 (Folate)
Before you read thisThis information is designed to help you understand how vitamins work in the body and how certain NET-related factors might affect them. It is not a substitute for personalised medical advice. Every NET patient is different — tumour type, treatments, surgery, symptoms, and nutritional needs can vary widely. If you have concerns… Read more: Neuroendocrine Tumours (NETs) – A Spotlight on Vitamin B9 (Folate) - Neuroendocrine Tumours – A Spotlight on Vitamin E (Tocopherols & Tocotrienols)
🟧A general‑population overview with NET‑specific considerations where relevant. Disclaimer: This Spotlight provides general educational information about Vitamin E. It is not a substitute for medical advice. Individual needs vary, particularly for those with conditions affecting digestion or absorption. Always consult your medical team before making changes to supplements or nutrition. What is Vitamin E? Vitamin… Read more: Neuroendocrine Tumours – A Spotlight on Vitamin E (Tocopherols & Tocotrienols) - Neuroendocrine Tumours – A Spotlight on Vitamin A (Retinol)
Disclaimer: This Spotlight provides general educational information about Vitamin A. It is not a substitute for medical advice. Individual needs vary, particularly for those with conditions affecting digestion, absorption, or liver function. Always consult your medical team before making changes to supplements or nutrition. 🟧A general‑population overview with NET‑specific considerations where relevant. What is Vitamin… Read more: Neuroendocrine Tumours – A Spotlight on Vitamin A (Retinol) - 200 Lanreotide Injections: A Milestone in Long‑Term Neuroendocrine Tumour (NET) Management
Disclaimer: Educational and advocacy content only. Not a substitute for medical advice. Two hundred injections. It’s a milestone that carries weight — not because of the number itself, but because of what it represents: continuity, stability, and the lived reality of managing Neuroendocrine Cancer over the long term. Lanreotide has been part of my life… Read more: 200 Lanreotide Injections: A Milestone in Long‑Term Neuroendocrine Tumour (NET) Management - Neuroendocrine Tumours (NETs) – A Spotlight on Vitamin K (Phylloquinone / Menaquinones)
Before you read thisThis information is designed to help you understand how vitamins work in the body and how certain NET-related factors might affect them. It is not a substitute for personalised medical advice. Every NET patient is different — tumour type, treatments, surgery, symptoms, and nutritional needs can vary widely. If you have concerns… Read more: Neuroendocrine Tumours (NETs) – A Spotlight on Vitamin K (Phylloquinone / Menaquinones) - A spotlight on Colon Neuroendocrine Neoplasms
Disclaimer: This Spotlight is for general information only and should not be used as a substitute for personalised medical advice. Neuroendocrine neoplasms (NENs) are diverse, and individual cases vary. Always discuss your specific situation, test results, and treatment options with your own specialist team. Content reflects current evidence and classifications at the time of writing… Read more: A spotlight on Colon Neuroendocrine Neoplasms
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Hi Ronny, I read all your messages etc and have a good laugh at some of your comments . I’m not very good at facebook etc but be assured I’m thinking of you and Chris. Keep the correspondence coming you are a much braver person than me but don’t tell anyone LOL If I can ever do anything for you or Chris I’m here. Best wishes
Jim Sykes
Date: Sat, 12 Jul 2014 14:18:46 +0000 To: sykesjst@hotmail.com