Neuroendocrine Cancer: Troublesome Thyroids


thyroid

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.  At the time, 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.  The thyroid gland does in fact get mentioned frequently in NET patient discussions but many of the conversations I monitored didn’t seem to fit my scenario – cue relentless study! I’ve been meaning to write this blog for some time but here is a synopsis of my research translated into ‘patient speak’.  This is intentionally brief, it’s a big subject.  I’ll finish off with an update on where I am with my thyroid issue.

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 know, 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 butterfly shape.  The two lobes lie on either side of your wind-pipe. 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.

Do I have Thyroid Cancer?

I’ve had a number of biopsies on the thyroid lesion, several fine needle aspiration (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.     A quick primer on Thyroid Cancer is below if you’re interested.

HOWEVER ………

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.

See EndocrineWeb for more detail about thyroid issues unrelated to NET.

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 a coincidence (for the time being …..).  I also have a hotspot in my left supraclavicularfossa (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 since the nodes were removed in 2012.   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).

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 now have regular tests and I saw him Endocrine MDT annually for a blood test review and ultrasound check (but see update below).

Latest update as at 15 Jan 2019

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 have now referred me back to be survellanced by the NET MDT, they remain on call for any issues.

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.

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?  The word ‘hashimoto’s’ also comes up on patient forums frequently – this is related to hypothyroidism (underactive).

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 these look familiar?

Check out this excellent short video from WebMD – click here or the picture below.  It’s based on USA but most of it is relevant globally. 

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

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 6 months. My levels are back to normal ranges since being prescribed thyroid hormone replacement therapy.

Remember:  Hypo is ‘underactive’, Hyper is ‘overactive’.  Sometimes there are very few symptoms.

Also worth mentioning something called the ‘Parathyroid’ as these glands can frequently be related to NET Cancer (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’.

Quick primer on Thyroid Cancer

 There are a number of different types of Thyroid Cancer

Papillary thyroid cancer is the most common type of thyroid cancer, accounting for about 80% of thyroid cancers. While papillary thyroid cancer typically occurs in only one lobe of the thyroid gland, it may arise in both lobes in up to 10% to 20% of cases. Papillary thyroid cancer is most common in women of childbearing age. It sometimes is caused by exposure to radiation. Even though papillary thyroid cancer is usually not an aggressive type of cancer, it often metastasizes (spreads) to the lymph nodes in the neck. Papillary thyroid cancer treatment usually is successful.

Follicular thyroid cancer accounts for about 10% of thyroid cancers. Like papillary thyroid cancer, follicular thyroid cancer usually grows slowly. Its outlook is similar to papillary cancer, and its treatment is the same. Follicular thyroid cancer usually stays in the thyroid gland but sometimes spreads to other parts of the body, such as the lungs or bone. However, it usually does not spread to lymph nodes. It is more common in countries where diets do not contain enough iodine.

There is a type of thyroid tumour which has recently been removed as a type of cancer.  “Encapsulated follicular variant of papillary thyroid carcinoma” is now known as “noninvasive follicular thyroid neoplasm with papillary thyroid-like nuclear features” or NIFTP.  The word ‘carcinoma’ has gone.  Read about this here.

Hurthle cell carcinoma, also called oxyphil cell carcinoma, is a type of follicular thyroid cancer. Most patients diagnosed with Hurthle cell cancer do well, but the outlook may change based on the extent of disease at the time of diagnosis.

Medullary thyroid cancer (MTC) is the only type of thyroid cancer that develops in the parafollicular cells of the thyroid gland. It accounts for 3% to 10% of thyroid cancers. Medullary cancer cells usually make and release into the blood proteins called calcitonin and/or carcinoembryonic antigen, which can be measured and used to follow the response to treatment for the disease. Sometimes medullary cancer spreads to the lymph nodes, lungs or liver before a nodule is found or the patient has symptoms. MTC can be treated more successfully if it is diagnosed before it has spread. There are two types of MTC:

  • Sporadic MTC is more common, accounting for 85% of medullary thyroid cancers. It is found mostly in older adults and is not inherited.
  • Familial MTC is inherited, and it often develops in childhood or early adulthood. If familial MTC occurs with tumours of certain other endocrine organs (parathyroid and adrenal glands), it is called multiple endocrine neoplasia type 2 (see my blog on MEN 2).

Anaplastic thyroid cancer is the most dangerous form of thyroid cancer. It is makes up only 1% of thyroid cancers. It is believed that anaplastic thyroid cancer grows from a papillary or follicular tumour that mutates further to this aggressive form. Anaplastic thyroid cancer spreads rapidly into areas such as the trachea, often causing breathing difficulties.  Anaplastic thyroid cancer sometimes is called undifferentiated thyroid cancer because the cells are so different from normal thyroid tissue.

Thyroid cancer is not very common but diagnoses are ‘skyrocketing’ most likely due to advanced detection techniques.  Most are very slow-growing with 5 year survival of 97% according to MD Anderson. There is a very interesting article about the overdiagnosis of Thyroid cancer which I found useful given my situation. You can read it here.

Thyroid ‘nodules’ would appear to be very common with 50-70% of all 50-70 year olds having at least one nodule present and statistically, 95% of these are benign (see EndocrineWeb

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Neuroendocrine Cancer – it can be ‘smoke and mirrors’

Neuroendocrine Cancer smoke and mirrorsIn a previous life, I used the term ‘smoke and mirrors’ quite a bit.  I was used to dealing with many different types of people, some who wanted something, some who wanted to buy or sell something. Most of the time it was overt but the devil was usually in the detail.  Sometimes there was an element of ‘covertness’ or a ‘hidden agenda’.  It was always tricky working out the details of the hidden agenda and sometimes it was only known when it was too late.  Some of you will already be seeing where I’m going with this line of thinking – if so, you worked out my hidden agenda!

‘Smoke and Mirrors’ is basically a term connected to the art of deception, a con trick, a way in through confusion and trickery (think magicians on TV!). 

Whilst certain cancers can appear with precise symptoms and leave you under no illusion what you’re facing, others can be a bit more circumspect – Neuroendocrine Cancer can be one of those.  It will fool you into thinking you’re not even ill and even when it puts its head above the parapet, this can come over as a routine illness and/or vague symptoms which will deceive both you and your physicians.   Thus why awareness is really important.  I won’t repeat my key messages but you can find them here in my blog entitled “Neuroendocrine Cancer can be silent – but it doesn’t mean we should be” – the more these posts and ones like it are shared, the quicker we can discover the hidden agenda. 

I have another hidden agenda!  I was inspired to write this post by my friend and blogger Shannon – she writes a blog called ‘A tale of two tumours’.  I really like this blog because there are no hidden agendas, what you see is what you get and she has catchy titles.  I also like Shannon because she has a great attitude despite the fact that she is probably still looking for the ‘hidden agenda’ or at least bits of it (then again perhaps we all are?).

Shannon has one of the uncommon variants of our disease, one of those tricky cases it would seem.  Her issues started some time ago and she was eventually diagnosed with Cushing’s Disease (see my Syndrome blog).  She has previous issues with pituitary, parathyroid and recently diagnosed with a Thymic NET.  She believes there is a potential connection with MEN1 (see my blog Running in the Family) but this is currently dismissed by her physicians.

There is potentially a new problem outlined in her latest blog which inspired me to write this post.  She has a very strange symptom in that she can smell smoke despite there not being any smoke and this happens in different locations.  Her latest blog is her story about this symptom and what happened next.  Excuse the language but I would be frustrated too!  Read the blog ‘Where there is smoke …..’ by ‘clicking here’.

I wish Shannon well and hope she gets some answers – no more tumours please.  You are a survivor!

Thanks for listening

Ronny

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Running in the Family – Multiple Endocrine Neoplasia (MEN)


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We all know that Neuroendocrine Tumours (NETs) and their syndromes are complex but there is even more complexity to be found in a group of related disorders known as Multiple Endocrine Neoplasia (MEN).  I recommend all NET patients should try to understand the basics of MEN and vice versa, particularly as both conditions seem to come with a plethora of endocrine related effects.

Overview

MEN patients will normally have a tumour in at least two endocrine glands – thus the terms ‘Multiple’ and ‘Endocrine’ (tumours can also develop in other organs and tissues).  Neoplasia is just another name for tumour and these can be non-cancerous (benign) or cancerous (malignant) with the potential to metastasize.

MEN syndromes can comprise varying combinations of tumours and many will be aware of the tumour risks from family knowledge.  So putting the heredity aspects to one side, it’s potentially an extremely challenging surveillance and subsequent diagnostic scenario if (and when) these risks are realised.  To add to the complexity, some of the associated tumours can be sporadic (non hereditary) classic Neuroendocrine Tumours in various locations.

MEN Types

MEN is actually an umbrella term for a number of types (syndromes) of the disease – MEN1, MEN2a and 2b (2b was formerly MEN3). There’s a new kid on the block called MEN4 which is extremely rare.

In the most basic of terms regarding the relationship with tumours:

MEN1 seems to be centred on tumours of the parathyroid glands, the pituitary gland, and the pancreas (the 3 P’s).

MEN2a mainly focuses on medullary thyroid carcinoma, pheochromocytoma, parathyroid hyperplasia or adenomas (causing hyperparathyroidism), and occasionally cutaneous lichen amyloidosis.

MEN2b  medullary thyroid carcinoma, pheochromocytoma, multiple mucosal neuromas and intestinal ganglioneuromas, and often a marfanoid habitus and other skeletal abnormalities.

MEN4 – A relatively new MEN variant and related to the CDKN1B gene, similar to MEN1 but normally only 2 of the 3 Ps, parathyroid and pituitary. Also referred to as MENX Possible association with tumors of the adrenals, kidneys, and reproductive organs.

What is particularly distinctive with MEN is that they are inherited disorders (familial).  That means that they can be passed down in families, with each child of an affected parent having a 1 in 2 or 50% risk of inheritance. Consequently genetic screening/testing is normally undertaken in established MEN families and those at risk of MEN.

Associated Issues

You may also have heard of other rare NETs with a familial aspect, in particular Pheochromocytomas (adrenal gland tumours) and Paragangliomas (outside the adrenal gland),  Not all are inherited and I mention them because of the connection with MEN2a and 2b.

Further information

I’m grateful to my friend and MEN patient Linda Hageman for supporting my blog activities and also for allowing me to join the AMEN support group to learn more.  This is one of the friendliest and well run support groups I’ve seen.  On this site, you will find Dr Mark Lewis, an Oncologist and MEN patient who supports Linda (who is a Nurse) with a ‘Ask the Doctor’ section on their website.

There are other organisations including one specifically for Pheochromocytomas and I’m grateful to Jennifer Shepard for featuring my nutrition blog series.

Complex area.

You may also enjoy my article on Genetics and Neuroendocrine Cancer.

Thanks for reading

Ronny

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