In 2013, just when I thought everything seemed to be under control, I was told I had a ‘lesion’ on the left upper lobe of my thyroid and that they had been monitoring it for a while. Of course at the time, you immediately assume NET. It was a bit of a shock as I had already been subjected to some radical surgery and wondered if this was just part of the relentless march of metastatic NET disease. However, that would be a simple explanation.
The thyroid gland does get mentioned frequently in NET patient discussions but many of the conversations I monitored didn’t seem to fit my scenario – cue relentless study! Despite the length of this blog post, it’s intentionally brief, it’s a huge and complex subject!
I’ll finish off below with an update on where I am with my thyroid issue.
Please note this post does not cover the parathyroid which is technically a different endocrine organ.
Do I Have “Thyroid Cancer”?
I’ve had a number of biopsies on the thyroid lesion, several fine needle aspirations (FNA) and one ‘core’. The FNAs were generally inconclusive, and the core confirmed fibrous tissue only. However, the general diagnosis is inconclusive, and I have been labelled “THY3F”. Curiously, this decodes to “an abnormality is present, but it could either be a benign (non-cancerous) growth or a malignant cancerous growth of the follicular cells. So, it’s possible I have 2 x cancer, that said, many of these types are classified as benign – see the 2022 Classification of Thyroid Neoplasms below.
I already had known issues above the diaphragm
There can be other issues with Thyroids including cancer and clearly, this was my concern when the word ‘lesion’ was mentioned. At this point, it’s worth mentioning something from my cancer history which I initially assumed was related but it would appear to be an incidental finding (coincidence). When I say, “above the diaphragm”, I mean the thoracic cavity, head and neck.
I also have a hotspot in my left supraclavicular fossa (SCF) lymph nodes (near the clavicle), geographically close to the thyroid (and my lesion is left-sided). 5 nodes were removed from this area in Feb 2012 for an exploratory biopsy which subsequently tested negative and CT and Ultrasound both show nothing vascular or pathologically enlarged. BUT …. there is still a hotspot showing on a subsequent Octreoscan and 2x Ga68 PET since the nodes were removed in 2012. Curiously, the Ga68 PET also lit up the left sub-pectoral lymph node area, I suspect this is another potential physiologic uptake/reactive node. For the record, I also had positively tested nodes removed from my left axillary (armpit) during the same procedure (my distant disease has always been left-sided to date). I also had an incidental lung nodule which they now just monitor.
The surgeon who operated on my left axillary and SCF nodes also specialises in Thyroids and so it was an easy decision to ask to be referred to him. He explained that whilst he could just take the left lobe or the whole thyroid, it would mean lifelong treatment to add to my current burden and perhaps for something which will never trouble me. As nothing is palpable and I have no symptoms, I agreed to a ‘watch and wait’ approach. I had regular tests for a couple of years and once he was happy with stability he referred me back to the NET MDT for monitoring. He also tracked my thyroid blood panel and I ended up with a low dose thyroxine supplement for mild hypothyroidism (see below).
A quick primer on Thyroid Neoplasm classification
This has changed dramatically from the previous classification system for thyroid.
Thyroid overdiagnosis and overtreatment
You can find many medical papers confirming that the incidence of thyroid tumour diagnosis has increased dramatically in many countries in the developed world over the past three decades. Papillary thyroid cancer, which has been responsible for virtually the entire increase, is rarely lethal. The 20-year survival rate is greater than 90% and approaches 100% for the smallest cancers. The increasing incidence is most likely due to overdiagnosis i.e. the detection of subclinical tumours never destined to cause harm. Overdiagnosis is a problem because it exposes people to the potential side effects of treatment, but without an equal expectation of benefit, because the cancer is unlikely to advance.
This type of problem exists in all cancer diagnoses because incidental findings such as the one above is only known due to checking for something else. At least they can be monitored after diagnosis of a condition such as NET.
For those interested, this recent Polish study covers the issue nicely.
Where is the thyroid and what does it do?
Before I found out about my thyroid problem, I had absolutely no idea what its function was. I can tell you now, it’s a small organ but it has a massive job!
It lies in the front of your neck in a position just below your ‘Adam’s apple’. It is made up of two lobes – the right lobe and the left lobe, each about the size of a plum cut in half – and these two lobes are joined by a small bridge of thyroid tissue called the isthmus. It is sometimes described as a butterfly shape. The two lobes lie on either side of your windpipe. The fact that it comes up a lot in NET patient discussions is hardly surprising as it’s an endocrine organ responsible for making two hormones that are secreted into the blood: Thyroxine (T4) and Triiodothyronine (T3). These hormones are necessary for all the cells in your body to work normally.
Thyroid Nodules
It’s easy to worry about irregularities showing up on scans if you have NETs. Take the thyroid, for example, the Ga68 PET has a habit of ‘lighting up’ thyroids – this is a worry because it’s an endocrine organ; and there is a type of thyroid tumour related to Neuroendocrine Neoplasms – Medullary Thyroid Carcinoma (MTC) including a familial variant – and not forgetting the parathyroid which is common in familial cases of MEN, and NETs have a habit of metastasizing to strange places. Sure, you should get it checked out when this happens, but while you will only hear about the outliers on social media, statistically, the vast majority of thyroid nodules are benign. We know about ours because we get so many scans, but many people will probably never know and will probably never be bothered by them either. When you look at the figures below, it becomes clear that many NET patients are going to have a thyroid nodule or lesion regardless of their diagnosis.
The following is a list of facts regarding thyroid nodules:
- Thyroid nodules are three times more common in women than in men
- 30% of 30-year-old women will have a thyroid nodule.
- One in 40 young men has a thyroid nodule.
- More than 95% of all thyroid nodules are benign (non-cancerous growths).
- Some thyroid nodules are actually cysts, which are filled with fluid rather than thyroid tissue.
- Purely cystic thyroid nodules (thyroid cysts) are almost always benign.
- Most women will develop a thyroid nodule by the time they are 50 years old.
- The incidence of thyroid nodules increases with age.
- 50% of 50-year-old women will have at least one thyroid nodule.
- 60% of 60-year-old women will have at least one thyroid nodule.
- 70% of 70-year-old women will have at least one thyroid nodule.
Click to read about Thyroid Nodules from experts
What else can go wrong with a thyroid?
Apart from cancer, the main issues appear to be an underactive thyroid or an overactive thyroid – known respectively as Hypothyroidism (not enough thyroxine is produced for the body’s needs) and Hyperthyroidism (too much thyroxine is produced for the body’s needs). Of course, these issues can be caused or made worse by cancer. It’s worth pointing out hypothyroidism is hugely more common than NET so it follows that many people with NET will be diagnosed with hypothyroidism regardless of the NET. Hyperthyroidism is much less common than hypothyroidism but still more common than NET. They are not always linked!
Hypothyroidism
If too little of the thyroid hormones are produced, the cells and organs of your body slow down. If you become hypothyroid, your heart rate, for example, may be slower than normal and your intestines work sluggishly, so you become constipated. Key symptoms: tiredness, feeling cold, weight gain, poor concentration, depression. Some of these symptoms look familiar? Read more on Mayo Clinic.
Hashimoto’s – Hashimoto’s disease is an autoimmune disorder affecting the thyroid gland which produces hormones that help regulate many functions in the body. It’s an autoimmune disorder which means it is an illness caused by the immune system attacking healthy tissues. In Hashimoto’s disease, immune-system cells lead to the death of the thyroid’s hormone-producing cells. The disease usually results in a decline in hormone production (hypothyroidism). Although anyone can develop Hashimoto’s disease, it’s most common among middle-aged women. The primary treatment is thyroid hormone replacement. Hashimoto’s disease is also known as Hashimoto’s thyroiditis, chronic lymphocytic thyroiditis and chronic autoimmune thyroiditis. See Mayo Clinic for symptoms.
It’s also worth noting that somatostatin analogues might cause a “slight decrease in Thyroid function” (it actually states words to this effect in the Lanreotide and Octreotide patient leaflets). Thus, why I advise you not to be underactive with your Thyroid surveillance – read more click here.
Hyperthyroidism
If too much of the thyroid hormones are secreted, the body cells work faster than normal, and you have Hyperthyroidism.
If you become hyperthyroid because of too much secretion of the hormones from the thyroid gland, the increased activity of your body cells or body organs may lead, for example, to a quickening of your heart rate or increased activity of your intestine so that you have frequent bowel motions or even diarrhoea. Key symptoms – weight loss, heat intolerance, anxiety, and, sometimes, sore and gritty eyes. Hmm, again, some of those sound familiar? Read more on Mayo Clinic. Graves’ disease is an immune system disorder that results in the overproduction of thyroid hormones (hyperthyroidism). Although a number of disorders may result in hyperthyroidism, Graves’ disease is a common cause. Read more about Graves on Mayo Clinic.
Thyroid disease can cause issues that some NET patients might try to pin on NETs. Best to get tested to avoid going down the wrong path. Read more on Mayo Clinic.
Testing
Routine ‘Thyroid blood tests’ from your doctor will confirm whether or not you have a thyroid disorder. I now test for TSH (thyroid-stimulating hormone), T3 and T4 every 12 months. My levels are back to normal ranges since being prescribed thyroid hormone replacement therapy.
Remember:
Hypo is ‘underactive’,
Hyper is ‘overactive’.
Fear of spread
It’s easy to be concerned about irregularities showing up on scans if you have NETs. However, a somatostatin receptor PET scan (SSTR PET) (e.g. Ga68 or Cu64) has a habit of ‘lighting up’ thyroids, and this can be worrisome, not least because it’s an endocrine organ.
Sure, you should get it checked out, but while you will only hear about the outliers on social media, the vast majority of primary thyroid cases are benign. If you constantly fear cancer spread with every single issue you undergo as a human being, you probably need some help. You may therefore find my ‘fear’ articles a useful read plus there are two videos presented by professionals who help cancer patients cope with these issues:
Article 1: Warrior or Worrier?
Article 2: 8 tips for conquering fear
Article 3: Don’t cross the bridge until you arrive at it
Parathyroids
Also, worth mentioning something called the ‘Parathyroid’ which are technically a different organ with a different job. These glands can also be related to NETs (see my blog on Multiple Endocrine Neoplasia (MEN)). It’s another subject in its own right but I just wanted to emphasise that this is a totally different organ with a totally different function (it regulates Calcium). They are located adjacent to the Thyroid, thus the term ‘para’.
Thyroid – The NET Effect
Other than an extremely rare metastasis from a NET primary, only one type of primary Thyroid Neoplasm has a strong and fairly common relationship with NET – Medullary Thyroid Cancer (MTC). I suspect there is a case study somewhere about a primary Thyroid NET other than MTC. Case studies are normally about stuff which is ultra rare with no statistics available.
MTC develops in the C cells (which can produce a hormone called Calcitonin) and is sometimes the result of a genetic syndrome called multiple endocrine neoplasia type 2 (MEN2). This tumour has very little, if any, similarity to normal thyroid tissue. MTC can often be controlled if it is diagnosed and treated before it spreads to other parts of the body. MTC accounts for about 3% of all thyroid cancers. About 25% of all MTC is familial (i.e. 75% are sporadic). This means that family members of the patient will have a possibility of a similar diagnosis. The RET proto-oncogene test can confirm if family members also have familial MTC (FMTC). Those diagnosed with FMTC should also be tested for MEN2A and 2B. Read more on Neuroendocrine Neoplasms (NEN) – genetic related syndromes (ronnyallan.net)
The only other connection I can find is that somatostatin analogues could mess with thyroid levels for some and this may lead to hypothyroidism. This is clearly stated on the drug insert leaflets.
My latest thyroid update as of 2023
After monitoring for the first two years, my specialist was not happy with TSH/T4 blood results (elevated for the second time and also on a retest). On 20 March 2018, following an Endocrine appointment, I was put on a trial dose of 50mcg of Levothyroxine to counter the thyroid panel results indicating mild hypothyroidism. Levothyroxine is a thyroid hormone replacement. My subsequent two x thyroid panel results are back in the middle of the range, so all is good. Am detecting a slight increase in available energy.
The results of my first Ga68 PET scan in June 2018 indicated some “uptake” but the report inferred it was physiological uptake (false positive). In fact, at my 2019 appointment, the thyroid lesion is slightly smaller on the latest ultrasound. I’m personally fairly certain this is not connected to NETs and my Endocrine MDT has now referred me back to be under surveillance by the NET MDT for this issue.
My second Ga68 PET in 2021 did not even mention the thyroid. My regular CT scans continue to monitor the thyroid and it’s currently ‘stable’. My very small low dose thyroxine tablet shows no side effects and my only beef is that I have to wait 30 minutes before I can eat or drink after taking it, an extremely small and minor irritant!
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. 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.
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Ronny
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Not only was my NETs undiagnosed for 20 years so we’re the tumors on my thyroid. After years of medication and biopsies showing benign results I had surgery 2 months after mid-gut NETs was accidentally found. The reason for thyroid surgery even though the most recent 2 month old biopsy showed benign was a nodule on my thyroid so large you could see it in a chest x-ray and swallowing was difficult. Turns out it was papillary on one side and follicular tumors on the other lobe. It’s mass had pushed my trachea into a backwards “C”, making it hard to swallow. Unless the needle goes into the affected site, it will show it to be benign, is what I was told. Over the 20 year period I had about 14 biopsies…all normal. No surgeon would touch it. The surgeon who found my NETs also removed my thyroid because he said any mass that large and intrusive to even swallowing water should be removed.
Ditto for going @ 20years before getting a diagnosis. Good to meet a fellow-traveller.
Do not wait any see in anything is my opinion!! That was our first mistake when my moms back surgeon wanted to watch and wait in the lesion in her L5 I begged them to biopsy they insisted on doing the back surgery first as she was in a great deal if pain! No biopsy until I asked again and guess what? This is how it was discovered she had neuroendocrine cancer ! Then the search began! It had spread from intestines to the L5 and a few other places! Thyroid same thing saw it light up on scan no one was too concerned about cancer! Several painful biopsy’s later all just as you said not got samples! We decided we wanted it taken out WE did! And it turns out papillary cancer so now going back in the removed the rest of thyroid! I saw bee aggressive! Never wait and watch NEVER!!!
I understand what you are saying but every patient’s experience is different. I’m well aware of the situation with my diagnosis and ongoing surveillance and have an excellent team. Many patients are on watch and wait for many tumors and in fact it is documented in all the NET specialist guidelines that this is often the best option. Thanks for your concern and I hope your mom is doing OK?
This was of interest to me too, since I was diagnosed with a completely unrelated cancer in a saliva gland seven months after my NETS diagnosis. It was removed surgically, followed by radiation. I had CT scans of head, neck, chest, abdomen & pelvis last week and I’m waiting for the results.
good luck with the scan results.
Well done, Ronny. Both my mother and one of my sisters had thyroid cancer and did well after the thyroid was removed.
We NETs patients do well to always think a new lesion is a NET metastasis but sometimes it is not. When I was treated for urinary bladder cancer, I had to fight the urinary surgeon hard to make sure the biopsy checked to make sure it was not neuroendocrine cancer. It was not NETs and he said “I told you so, it is too rare.” I was glad that I demanded the biopsy anyway. They don’t seem to recognize that it is not as rare if the patient is already known to have NETs.
Have the best possible outcomes,
Cy