A fairly common disposition of metastatic Neuroendocrine Tumours (NETs) is a primary with associated local/regional secondary’s (e.g. lymph nodes, mesentery and others) with liver metastases. Technically speaking, the liver is distant. However, many metastatic patients have additional and odd appearances in even more distant places, including (but not limited to) the extremities and the head & neck. In certain NETs, these might be an additional primary (e.g. in the case of Multiple Endocrine Neoplasia (MEN); or they could even be a totally different cancer. The worry with NETs is that the ‘little suckers‘ can sometimes make these surprise appearances given that neuroendocrine cells are everywhere!
Cancer doesn’t just spread through the blood steam, it can also spread through 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.
I also had the usual bulky chains of lymph node metastases in or around the mesentery that frequently appear with an abdominal primary (in my case the small intestine). These were all removed as part of my primary resection. However, I knew since shortly after diagnosis in 2010 that I had ‘hotspots’ in my left ‘axillary’ lymph nodes (armpit) and my left ‘supraclavicular fossa’ (SCF) lymph nodes (clavicle). These were found on Octreoscan but at the time, they were not pathologically enlarged – just ‘lighting up’.
In early 2012, 15 months after removal of primary and 10 months after liver resection, one of the axillary lymph nodes became palpable (signs of growth) and this coincided with a small spike in Chromogranin A. A total of 9 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 SCF left clavicle nodes were removed but tested negative. On a subsequent Octreoscan, the armpit was clear but the clavicle area still lit up. However, there is no pathological enlargement or pain – so this is just monitored.
I have a 3mm lung ‘nodule’, discovered in 2011. Apparently, lung nodules are a pretty common incidental finding with 1 per 500 X-rays and 1 per 100 CT scans finding them. This is monitored.
I have a 19mm thyroid lesion which was pointed out to me in 2013. This has been biopsied with inconclusive results. Although the thyroid is an endocrine gland, it looks like a non-NET problem so far. I attend an annual Endocrine MDT where this is monitored with close coordination with the NET MDT. Thyroid nodules are in fact very common and statistically, 50-70% of all 50-70 year olds will have at least one ‘nodule’ present (i.e. if you are in your 50s, there is a 50% chance you will have one nodule and so on). The vast majority will never bother a person while they live. That said, my thyroid blood tests are abnormal and on 20th March 2018, following an Endocrine appointment, I was put on a trial dose of 50mcg of Levothyroxine to counter the thyroid panel results indicating hypothyroidism. Levothyroxine is a thyroid hormone replacement.
Early in 2017, during my Endocrine MDT, a surveillance ultrasound spotted a slightly enlarged lymph node on the right side (measuring 9mm x 9mm) described as a ‘level 4’ node (a location indicator meaning the ‘lower jugular group’). The report was passed to the NET MDT for their consideration with the surgical rep on the Endocrine MDT recommending a conservative approach – the NET MDT agreed. I suspect that’s right, it’s still below the worry threshold, nothing is palpable (no lumps) and I don’t have any specific symptoms. There could have been a number of reasons for the enlargement and it might even be back to normal size on my next scan. Hopefully just a non-issue. All my issues have been left-sided to date, so this was interesting. That said, I did have an MRI last year to investigate pain and a swelling at the site of my right ‘sternoclavicular’ joint – subsequently declared a non-issue.
Life as a metastatic Neuroendocrine Cancer patient is interesting and efficient surveillance is absolutely critical.
You may enjoy my post “Living with Neuroendocrine Cancer – 6 tips for conquering fear”
Thanks for reading