Home » Awareness » Neuroendocrine Cancer: Troublesome Thyroids

Neuroendocrine Cancer: Troublesome Thyroids

Translate this post

Recent Posts


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?  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.

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).

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?

It’s also worth noting that somatostatin analogues might cause a “slight decrease in Thyroid function” (it actually states this on the Lanreotide patient leaflet).

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.  Mostly in range but recently TSH is spiking and both T3 and T4 are consistently at the lower end of normal range.

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’.

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.  My thyroid specialist is quite clear – this is a benign growth and is not related to NETs.  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).  A quick primer on Thyroid Cancer is below if you’re interested.

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 see him in the Endocrine MDT every 12 months for a blood test review and ultrasound check. My 6 monthly NET scan also monitors my thyroid lesion – so it’s ‘double bubble’ surveillance.

Latest update as at 20 March 2018

My specialist is not happy with TSH 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 hypothyroidism. Levothyroxine is a thyroid hormone replacement.

Thanks for reading

Ronny

I’m also active on Facebook.  Like my page for even more news.  I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

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).


6 Comments

  1. Diana Lewis says:

    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.

    Liked by 1 person

  2. Thall says:

    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!!!

    Like

    • Ronny Allan says:

      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?

      Like

  3. edebock says:

    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.

    Liked by 1 person

  4. cy says:

    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

    Liked by 1 person

Thanks for the comment, make sure you have ticked the box to receive notifications of responses

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s

%d bloggers like this: