Updated 27th February 2026
My experience with lymph node surgery – 27th February 2012
As a metastatic Small Intestine NET case, I had the usual bulky chains of lymph node metastases in or around the mesentery that frequently appear with an abdominal primary. Most of these were removed during my primary resection. I still have some suspicious lymph nodes in the peri-aortic region, potentially responsible for my retroperitoneal fibrosis, another strange issue I live with.
However, I also had some ‘distant nodes’ above the diaphragm. My surgeon described my ‘distant’ lymph node issues as an ‘unusual disposition‘ of tumours. These were initially discovered on my diagnostic Octreoscan (this was before Ga68 PET!). But they were ignored from diagnosis in summery of 2010 until after I had primary and liver surgery (surgeries 1 and 2).
In early 2012, 15 months after removal of primary and 10 months after liver resection, one of the left sided axillary lymph nodes became palpable (signs of growth) and this coincided with a small spike in Chromogranin A. A total of 9 lymph nodes were removed very shortly after this surveillance, 5 of which tested positive for NETs (Ki-67 <5%). As part of the same operation, 5 left sided supraclavicular fossa (SCF) nodes were removed but tested negative. As a result of that left axillary surgery, I had some lymphatic fluid build-up in my armpit which became swollen and painful. I had it drained by fine needle aspiration (FNA) around 3 times before it settled down. I now live with some very mild lymphedema in my left hand which looks slightly puffier than my right. I also have to avoid the left arm for blood draws. That said, the issue is much less noticeable today. By the way, the surgeon carrying out this work wasn’t a NET surgeon per se but he was known for working alongside my Oncologist who was part of the NET MDT. He was in fact well known for breast cancer surgery and these distant lymph node areas are common in breast cancer. So, he was perfect for the job. Sometimes you just need an anatomical specialist working under the direction of the NET MDT.
On follow up scans (including a further Octreotide scan), the armpit was clear, but the clavicle area still lit up. However, there is no pathological enlargement or pain – so this is just monitored.
Fast forward to 2018, I had my first Ga68 PET and it was interesting to see the SCF nodes light up on Ga68 PET which also showed additional glow in the left sub-pectoral nodes. This was subsequently checked on ultrasound, and nothing is pathologically enlarged, so assumed to be physiological uptake. I reinstated my search for other small intestine NETs with the same ‘odd disposition’ and started to find more (thanks to my group). My blog work uncovered a link to these distant lymph node issues which I had thought were more related to people with Paragangliomas, Lung NETs and tumours of the breast. I also discovered that sometimes when lymph nodes light up on nuclear scans, this is physiologic uptake and not really an issue, despite the worry it can bring. You can read about this discovery below.
“An unusual disposition of tumours” is a quote by my surgeon. I’ve written several blogs about this general subject and I can see from my patient group, I’m not alone”
It appears there are potential linkages to something called Virchow’s Node. The Virchow’s node is a single node within the left SCF. Read about that in the link.
I also have inflammation at the right side of the sternoclavicular joint (MRI checked) which does not light up but recently sometimes feels painful in that area (2014 MRI said no issues). There is something lighting up (SSTR) in a difficult to reach place near my aorta which is being carefully watched as there is a potential connection to my retroperitoneal fibrosis which is close to my left ureter. I already had risky surgery to strip much of this away. You can read about my SSTR scan history here.
But it was the studies leading to this follow-on blog which I named “an odd disposition of tumours” quoting my surgeon’s words.
Read that blog by clicking here or on the picture below. It was good to finally find some research indicating a potential link between small intestine NETs and left sided supraclavicular fossa lymph nodes which has been lighting up since 2010 but was found to be biopsy negative in 2012. If you have a small intestine NET, according to the study of there is a 4% chance of your left SCF nodes lighting up! There are no prognostic changes involved. It was a great feeling to read this study and finally get some answers after 10 years.
A reminder – how cancer spreads
In addition to the primary growing into other areas, cancer can form metastases through the bloodstream and the lymphatic system. This is a system of thin tubes (vessels) and lymph nodes that run throughout the body in the same way blood vessels do. The lymph system is an important part of our immune system as it plays a role in fighting bacteria and other infections; and destroying old or abnormal cells, such as cancer cells. The lymphatic system also contains organs, some of which feature regularly in NETs. If cancer cells go into the small lymph vessels close to the primary tumour they can be carried into nearby lymph glands where they stick around. In the lymph glands they may be destroyed (that is actually one of the jobs of the lymph glands) but some may survive and grow to form tumours in one or more lymph nodes.
Life as a metastatic Neuroendocrine Cancer patient is interesting and thorough staging and grading at diagnosis plus efficient surveillance is absolutely critical.
In addition to linked posts in blue above, you may enjoy my posts:
Nodes, Lesions, Nodules and False Alarms
Disclaimer
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.
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.
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