
Neuroendocrine Cancer: I hadn’t heard of it until I was diagnosed with it
My diagnosis came with many strange words including, “carcinoid” and “neuroendocrine” ……… can you spell that please, I said to the doctor. I had a

Buy me a cup of tea or two? Change the number below to increment. i.e insert 2 = £8, 3 = £12, etc
Overheads to run this site, e.g. software packages, domain registration fees, software tools, misc items. Donate £4 or more so I have the fuel to keep on providing great content!
£4.00
Every day is a learning day in NET!
When I was diagnosed in 2010, my Oncologist sent me for a specialist scan that would help confirm my staging definition and to document anything that might not have shown up on CT. This was described as an Octreotide Scan (somatostatin receptor scintigraphy) (now mostly replaced by Somatostatin Receptor PET (SSTR PET) e.g. Ga68/Cu64).
Lo and behold, the 3 day Octreotide scan lit up some odd places which seemed to be unconnected to my small intestine primary. I was already stage IV due to the presence of liver metastases and this was an added complication to deal with. The new findings were identified as left axillary (armpit) and left supraclavicular nodes (described initially as supraclavicular fossa nodes or SCF for short). My main surgeon, a very experienced NET specialist described these as “an unusual disposition of tumours”.
I initially had a primary surgery and a second operation carrying out a liver resection. The suspicious uptake was monitored during this period. Fast forward 18 months from the octreotide scan findings (end Feb 2012) and my left axillary nodes were resectioned following a small spike in Chromogranin A. The findings concluded that 5 out of 9 nodes resectioned were positive for NET but 5 out of 5 from the SCF nodes were negative. Since then, I’ve always been suspicious of some of the early findings.
I was therefore very interested to see two studies which explored the prevalence of metastases outside of the liver and abdominal lymph nodes in cases of small intestine and pancreatic NETs (i.e. locations other than the most prevalent metastatic sites found in these two NET primary types). I will cite both studies below which have been written by specialists from one of the world’s top NET centres of excellence in Uppsala Sweden, specialists from Greece also contributed to the 2nd study involving left sided supraclavicular fossa lymph nodes (Virchow nodes). The first study was based on 2090 patients in Sweden who were examined by 68Ga-DOTATOC-PET/CT at two tertiary referral centres, a total of 1177 patients with a history of Si- or Pan-NET. The study provides the data including percentages, so it does not automatically apply to all Si- or Pan-NET patients (the reason that some people get them and others don’t will probably remain a mystery for some time). The second study focused on SI NETs using records of 230 patients (and I thought it was just me for a long time!).
I once wrote an article about the most likely places primary sites would potentially reach if they metastasised. This is mostly related to how the blood and lymph fluid flows around the body and is a general observation across all cancers, not just NET. e.g. this happens in part because the blood supply flows from many places directly to the liver through a large blood vessel called the portal vein (simple explanation, it’s probably more complicated than that).
The study only covers pancreatic and small intestine NET which are the two NET primary types with the highest risk of distant metastases. I’m not saying that those with other primary types will never have distant metastases, I’m just saying pancreatic and small intestine NETs have a propensity to metastasise more than other primary NET types.
I’ll give you the abstract here which is probably OK for most but the link to the whole document is cited below for the more inquisitive.
Abstract (tabulated for easier reading)
Metastases outside the liver and abdominal/retroperitoneal lymph nodes are nowadays detected frequently in patients with neuroendocrine tumours (NETs), owing to the high sensitivity of positron emission tomography (PET) with Gallium-68-DOTA-somatostatin analogues (68Ga-SSA) and concomitant diagnostic computed tomography (CT). Our aim was to determine the prevalence of extra-abdominal metastases on 68Ga-DOTATOC-PET/CT in a cohort of patients with small intestinal (Si-NET) and pancreatic NET (Pan-NET), as well as that of pancreatic metastasis in patients with Si-NET. Among 2090 patients examined by 68Ga-DOTATOC-PET/CT at two tertiary referral centres, a total of 1177 patients with a history of Si- or Pan-NET, were identified. The most recent 68Ga-DOTATOC-PET/CT report for each patient was reviewed, and the location and number of metastases of interest were recorded.
Lesions outside the liver and abdominal nodes were found in 26% of patients (n=310/1177), of whom
– 21.5% (255/1177) were diagnosed with Si-NET
– 4.5% (55/1177) Pan-NET.
-Bone metastases were found in 18.4% (215/1177),
-metastases to Virchow’s lymph node in 7.1% (83/1177),
– and to lung/pleura in 4.8% (56/1177).
In the subset of 255 Si-NET patients:
5.4% (41/255) manifested lesions in the pancreas,
1.5% in the breast(18/255),
1.3% in the heart (15/255)
1% in the orbital (12/255) – it is not clear if this includes the orbital contents (the eye).
In Si-NET patients, the Ki-67 proliferation index was higher in those with ≥2 metastatic sites of interest, than with 1 metastatic site, (p<0.001).
Overall, extra-abdominal or pancreatic metastases were more often found in patients with Si-NET (34%) than in those with Pan-NET (13%) (p<0.001).
Bone metastases were 2.6 times more frequent in patients with Si-NET compared to Pan-NET patients (p<0.001).
Lesions to the breast and orbita were encountered in almost only Si-NET patients.
In conclusion, lesions outside the liver and abdominal nodes were detected in as many as 26% of the patients, with different prevalence and metastatic patterns in patients with Si-NET compared to Pan-NET. The impact of such metastases on overall survival and clinical decision-making needs further evaluation.
Citation
Wedin M, Janson ET, Wallin G, Sundin A, Daskalakis K. Prevalence of metastases outside the liver and abdominal lymph nodes on 68Ga-DOTATOC-PET/CT in patients with small intestinal and pancreatic neuroendocrine tumours. J Neuroendocrinol. 2024;e13391. doi:10.1111/jne.13391
Virchow’s node metastasis (VM) refers to the involvement of the left supraclavicular lymph nodes at the junction of the thoracic duct and the left subclavian vein. Generally, VM is considered by clinicians to be a strong indicator of metastatic abdominal malignancy, and its dismal prognostic significance has previously been described in patients with metastatic gastric and ovarian cancer.
To date, comprehensive descriptions of patients with small intestinal neuroendocrine tumors (SI-NETs) and rare metastatic manifestations, including that of VM, are sparse. In the present study from two tertiary referral centers, the prevalence of the VM secondary to SI-NET primaries was found to be 3.9%. VM was more often encountered in patients with higher-grade tumors and established disseminated disease to distant para-aortic lymph nodes. However, the presence of VM did not yield any negative prognostic impact in patient outcomes when compared to age- and sex-matched patients of similar grade with distant metastases confined in the abdomen
Abstract
Small intestinal neuroendocrine tumors (SI-NETs) may rarely metastasize to the left supraclavicular lymph nodes, also known as Virchow’s node metastasis (VM). Data on prevalence, prognostic significance, and clinical course of disease for SI-NET patients with VM is limited.
In this retrospective analysis of 230 SI-NET patients treated at two tertiary referral centers, we found nine patients with VM (prevalence 3.9%). Among those, there were 5 females and median age at SI-NET and VM diagnosis was 61 and 65 years, respectively. Two patients had G1 tumors and five G2, while two tumors were of unspecified grade (median Ki67: 7%, range 2–15%). Four patients presented with synchronous VM, whereas five developed metachronous VM after a median of twenty-four months (range: 4.8–117.6 months).
Hepatic metastases were present in seven patients, extrahepatic metastases (EM) in eight (six para-aortic distant lymph node metastases, one lung and one pancreatic metastasis), whereas peritoneal carcinomatosis (PC) in two patients. We used a control group of 18 age- and sex-matched SI-NET patients from the same cohort with stage IV disease but no extra-abdominal metastases.
There was no difference in best-recorded response to first line treatment according to RECIST 1.1 as well as progression-free survival (PFS) between patients with VM and those in the control group (Chi-square test p = 0.516; PFS 71.7 vs. 106.9 months [95% CI 38.1–175.8]; log-rank p = 0.855). In addition, median overall survival (OS) of SI-NET patients with VM did not differ from those in the control group (138.6 [95% CI 17.2–260] vs. 109.9 [95% CI 91.7–128] months; log-rank p = 0.533).
In conclusion, VM, although relatively rare in patients with SI-NETs, is more often encountered in patients with G2 tumors and established distant para-aortic lymph node metastases. The presence of VM in SI-NET patients does not seem to impact patients’ survival outcomes and treatment responses, when compared to age- and sex-matched SI-NET patients with stage IV disease confined in the abdomen.
Citation
Wedin M, Tsoli M, Wallin G, Janson ET, Koumarianou A, Kaltsas G, Daskalakis K. Heterogeneity of Small Intestinal Neuroendocrine Tumors Metastasis: Biologic Patterns of a Series with Virchow’s Node Involvement. Cancers (Basel). 2022 Feb 12;14(4):913. doi: 10.3390/cancers14040913. PMID: 35205660; PMCID: PMC8869999.
These is one of the most fascinating studies I have read, mainly because it addresses some of my suspicions since 2010. This study might explain why my a location within my left SCF nodes lights up on SSTR PET. I carried out some research on left supraclavicular nodes. You will note the mention in the above reference to “Virchow’s lymph node” (sometimes referred to as “Troisier sign”) which has been identified as a seeding location for cancers arising from myriad locations including stomach, intestines, urogenital system, esophagus, common bile duct, liver, as well as the pancreas, and lungs. The study above confirms that metastasis in Virchow’s lymph node refers to metastatic involvement of a lymph node in the left supraclavicular fossa (SCF), generally considered a strong indication of abdominal malignancy. Also confirming that the prevalence of Virchow’s lymph node metastasis was 3%–4% in Si-NET and Pan-NET patients, but the good news is that it was not associated with worse prognosis. It also links to another odd location in the para-aortic lymph nodes, something else which is odd about my diagnosis.
My surgeon was right, I do have an odd disposition of tumours.
From one of my learning sites (click here) …… “The supraclavicular lymph nodes are a paired group of lymph nodes located on each side in the hollow superior to the clavicle, close to the sternoclavicular joint. It is the final common pathway of the lymphatic system as it joins the central venous system. They oversee the transport of lymph from the thoracic cavity and abdomen.
Specific to the right supraclavicular lymph node is the drainage of the mid-section of the chest, oesophagus and lungs.
One of the left supraclavicular lymph nodes, known as the Virchow node, drains the thoracic duct, abdomen, and thorax. It is adjacent to the junction where incoming lymph is introduced back into the venous circulation through the left subclavian vein.“
Note: The thoracic duct is the largest lymphatic vessel in the human body. Around 75% of the lymph from the entire body (aside from the right upper limb, right breast, right lung and right side of the head and neck) passes through the thoracic duct. (interesting as most of my issues above the diaphragm have been left sided).
Strangely, my SCF node area still lights up on SSTR PET but nothing is showing as pathologically enlarged on conventional imaging (CT). I had written it off as physiologic uptake but perhaps there is some explanation to be accepted despite no change in prognosis as above.
I also noted the study above covered bone, lung, orbital (eye), breast and cardiac. So perhaps my right rib number 11 (identified in 2018 SSTR PET) and my left axillary nodes (at diagnosis – see above) are potentially related to my SI NET primary.
I was happy to make these potential connections to my 2010 diagnostic mystery! From ‘odd’ to a potential connection with my Small Intestine NET!
Every day is a school day in NET.
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. Some content may be generated by AI which can sometimes be misinterpreted. Please check any references attached.
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.
Thanks for reading.
Blog Facebook. Like this page please.
Personal Facebook. Like this page please.
Awareness Facebook Like this page please.
Follow me on X (formerly twitter)
Check out my online presentations
Check out my WEGO Health Awards


My diagnosis came with many strange words including, “carcinoid” and “neuroendocrine” ……… can you spell that please, I said to the doctor. I had a

Ronny Allan’s ‘PoNETry’ © series can be shared with poetry credit to: RonnyAllan.NET Thanks for reading Ronny I also have one about Lanreotide (or “butt

When I was diagnosed, I didn’t even feel ill. It was therefore a bit of a shock being told I had metastatic cancer, advanced enough to

I was assessing performance of the awareness period in November 2025 on Facebook and was astonished to find the size of my reach on that

Here is the monthly summary of November 2025 on RonnyAllan.NET – Every share helps someone understand or even work towards a diagnosis, discovery of the

Discover more from Ronny Allan – Living with Neuroendocrine Cancer Subscribe to get the latest posts sent to your email. Type your email… Subscribe

Bone metastases in Neuroendocrine Tumours (NET) Many of you will know that I am a stage IV small intestine NET and I have one bone

What is Radioligand Therapy? When you browse the internet, you may see the term “Radioligand Therapy (RLT)” and wondered what it was. There’s a simple

D Day I was 54 years and 9 months old at diagnosis on 26th July 2010. For the first few months, I had no idea

Buy me a cup of tea or two? Change the number below to increment. i.e insert 2 = £8, 3 = £12, etc
Overheads to run this site, e.g. software packages, domain registration fees, software tools, misc items. Donate £4 or more so I have the fuel to keep on providing great content!
£4.00
Subscribe to get the latest posts sent to your email.
Subscribe now to keep reading and get access to the full archive.