Neuroendocrine Cancer: Nodes, Nodules, Lesions

www-cancer-gov_publishedcontent_images_cancertopics_factsheet_sites-types_metastaticA 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.

The Lymphatic System

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.

thyroidI 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


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16 thoughts on “Neuroendocrine Cancer: Nodes, Nodules, Lesions”

  1. Thank you. His local GI doc has consulted briefly with Dr. Sue O’Dorisio but we have not been out to see her. Maybe it’s time. She has us monitoring blood work every 3 months but did not feel a specialty scan was necessary at this point. From what I’m reading, a mesenteric lymph node over 6mm is considered enlarged. Multiple journal articles also mentioned that anywhere from 40-70% of NETs will spread to the mesentery, specifically via the lymph nodes. We see his GI today so maybe she’ll know more. I was hoping that a lymph node with NET cells would have a very distinct look to it that clearly they didn’t see in our sons. Thank you for your input and thank you for all you do with the blog… I’ve learned SO much from you!

    1. Dr Sue O’Dorisio is top notch, very experienced with younger patients. I read something about lymph node size but cannot remember where! 6mm seems small to me though. I’d be interested to hear what happens next?

  2. Hi Ronny, Do you happen to have any information on how a doctor would look at an MRI and determine that a swollen mesenteric lymph node is nothing to be concerned about vs. something that needs to be explored further? Our son’s MRI revealed mesenteric adenitis- with multiple lymph nodes being swollen, one measuring 1.5cm. Three doctors- his GI, his hematologist, and a NET specialist all told us they were nothing to worry about. I would love to know if you are familiar with the characteristics of such a finding that would assure a doctor that it is no big deal… or the characteristics of a swollen mesenteric lymph node that would be of concern. (FYI- our son has had a years worth of elevated CgA- roughly double the upper limit, an elevated serotonin, chronic diarrhea/loose stools, abdominal pain (mild to severe), and flushing of his ears). Thanks for any insight you might have into the imaging of these lymph nodes!

    1. Never heard this before but that’s not to say it’s not accurate. Elevated CgA and serotonin combined with diarrhea and abdominal pain would worry me because of what I know. Flushing is a cardinal sign. 5HIAA would be a useful test. MRI is a good scan but it is said to be of most use for liver scans. A CT should show up something, an Octreotide or Ga68 scan should show up better if somatostatin receptors are good (technical but just take my word at this stage). Check our my blog post on scans Who is your NET specialist?

  3. Ronny, Thank you again for breaking it down and taking some of the mystery out of the lack of information out there. Here in the USA, we are encouraged by the efficacy of Lutathera, and hope that FDA will soon approve–as this is our viable plan B.
    My wife has NET, had surgery in April 2015. Some of the Octreotide treatments have had little success. Recently, Capesidibine has proven to be effective–with recent scans showing REDUCTION of some lesions in liver. Very encouraging. As you know, it is a journey but with recent article on Lutathera in NE Journal of Medicine, PRRT effectiveness is giving us hope for a longer path.
    Keep up the good work mate!
    Paul Q

  4. Hi, we usually hold a fundraising event or two in spring, usually for bowel cancer. I have now been diagnosed with NET and wonder if you know of any relevant research centre, or similar in the UK that we might donate to

  5. They definitely don’t want to mess with my lymphs😉 Although surgeon last week thinks one of mine could be the prime suspect for my current issues🙄
    Fingers crossed that the new node behaves Ronny

  6. I go 6 months for NETs and they discuss me beforehand if there is anything going on. I mainly meet with my Onco and Specialist NET Nurse as I’m fairly stable. When I attend my Endo MDT, there’s a whole bunch of people in there!

  7. Hi Ronny,
    You seem to have a close relationship with your MDT. I would guess most of us only really know the surgeon or oncologist. How does that work and do you get to attend an annual meeting?
    All the best and thanks so much for your informative posts.

  8. Reading all this is scary.I had surgery Dec 17,2016.The surgeon removed part of my small intestine(carcinoid tumor was in the ileum,very small),he took the right colon plus 14 lymph nodes with 5 being malignant.He told my family he got it all,but it’s scary to think it could just pop up again anywhere.I will have scans Jan 30,17 and again April1,17.The oncologist said if no cancer shows up Jan 30 I wont have to do anything but keep doing scans,but I will be on a monthly shot if any do show up.I just keep praying and doing the best I can.

    1. sounds like you have a good team, surveillance is important in NETs. Most things are minor. If you had no visible liver metastasis, that’s normally a better sign. Did you have an octreoscan or a Ga68 Scan? The point about this blog is that some nodules can be nothing to worry about. I may even have had that lung nodule and the thyroid lesion before my NETs.

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