I need my head examining!

Judy shares her journey with Poorly Differentiated Thyroid Cancer (PDTC) [1].

For a website dedicated to thyroid disorders, why would you publish a story with this title? Well, in my case it was necessary, and I’ll explain why.

I was first diagnosed with a goitre when I was 23 years old by a gynaecologist, of all people. He said he would inform my GP and advised that I should go and see them to get my thyroid function tested (TFTs), which I did, and all was apparently fine.

Over the years, if I ever needed to see a GP, I asked for TFTs and they always came back ‘within normal range’.  I forgot about it and got on with my life.

I got married and qualified as a physiotherapist at the same time.  We went on to have three children.

After each child, I was diagnosed with postnatal depression. I put it down to not coping with the changes involved in parenthood. I was put on antidepressants, which I took intermittently for 12 years and did various therapy courses.

All this time, my goitre had been slowly growing but I hadn’t noticed. I never developed a hoarse voice, but I did develop a problem with my singing, Again, I saw my GP, had my thyroid function tested but all was normal, so no further action was taken.

About 15 years ago I started getting shooting pains up my neck from my goitre to my ear. Although this is not always listed as a symptom of thyroid cancer, I understand some patients experience this. They were so fleeting I did not immediately seek help but when I did, I was referred for an ultrasound scan and fine needle aspiration. Both came back as being nothing to worry about.

I also developed drenching night sweats at about the same time, but they were infrequent. The GP put this down to perimenopause. Again, my TFTs were done and were ‘within normal range’ so I just attributed everything to my blessed hormones and carried on.

In 2016 I developed the worst sore throat I had ever had. It was so bad that I could not swallow my own saliva. I was prescribed a course of antibiotics, and then another, but there was no improvement. After six weeks I was referred back to ENT who did a nasopharyngoscopy[2] and felt there was nothing to worry about.  They requested another ultrasound scan of my goitre which now showed it was multinodular with one central larger cyst in the left lobe. This measured 1.5 cm, but it all looked benign – something to do with echogenicity [3]

I later developed an enlarged lymph node in my neck which was painless and about the size of a golf ball.  I was sent for a biopsy which showed some abnormal-looking cells, so the Ear, Nose and Throat (ENT) surgeon wanted to take it out, just to be safe.  He sent it off to the lab asking them to assess for lymphoma and/or tuberculosis. It came back as being a ‘reactive lymph node’.  No-one was interested in my thyroid at this point, and I didn’t think to ask the doctor about it, having been told that it was benign and unlikely to change.

I can’t quite remember what happened to my throat, but it obviously settled down again and I carried on as usual.  At about the same time my husband developed Type 2 diabetes, so we went on a health drive to lose weight. In my case, this was three stone, which I achieved within 18 months.  I was a bit concerned about how easy it had been as I’d understood it got more difficult to lose weight with age, but my GP did not appear to be concerned.

In 2017 I had my first visual disturbance.  I trotted back to the GP and was told it was a migraine with aura, only I hadn’t had a headache, just a period of 45 minutes where I had to sit down and put up with a feeling like I was looking through cut glass and feeling a little sick.  It passed eventually.  I also was developing balance problems.  I was referred for an MRI to exclude an acoustic neuroma[4]  The MRI did not cover the whole head and I was given the all-clear.  So, I carried on thinking nothing was wrong.  I was referred to Vestibular Rehab and told it was probably all stress-related and that it could be associated with a very difficult bereavement I had experienced earlier that year.

In 2019 I noticed that my goitre had really enlarged over a short period of time so again I went back to the GP.  The shooting pains up the left side of my neck had increased in frequency and severity and were on the same side as the larger cyst in the left lobe.  My GP thought I was just noticing the goitre more because I had lost so much weight!  However, he sent me back to ENT, who did another ultrasound but without the fine needle aspiration.  This showed the larger cyst in the left lobe, now measuring 3.3 cm.  However, the sonographer does not appear to have compared their findings with the previous ultrasound. Had they done so, they would have noticed it had more than doubled in size in three years!  I still did not have a hoarse voice, so the ENT surgeon was not concerned about thyroid cancer, apparently.

Again, I forgot about my thyroid, believing, as all the doctors thought, that everything was benign, quite common and not really causing any problems.

I then had unplanned major surgery on my left knee in 2021. During my convalescence, I noticed an unusual sound when I was scratching the top, right hand side of my head. The only way I can describe it is that it was like I was scratching paper rather than wood. It was only the size of the tip of my finger, but it weirdly made me worry that the bone was thinning.  My father had died of myeloma that affected all his bones.  I mentioned it to my GP and he dismissed it.

Over the following three months this patch grew and, looking back on it now, I realise I was struggling to judge speed and distance, but I just put it down to ageing eyesight! By now, I was also getting more frequent heart palpitations.  I’d had a 24-hour heart monitoring tape, but it didn’t reveal anything worrying.  I was also getting involuntary twitches in my right hand, but they were short-lived and not debilitating.

The patch on my head grew to the size of a 50p piece and started to go ’boggy’ and channel down towards my right ear, branching at intervals.  It began to pulse especially upon exertion, and I developed a new pulse on my occiput (base/back of the head).  I sought more help from my GP – he effectively called me a hypochondriac, giving me a diagnosis of fibromyalgia, functional neurological deficit, trigeminal neuralgia[5] . I knew he meant he had no idea what was wrong and did not want to look into it any further.  I changed GP practices and went to see another, much more open-minded and caring GP who did a whole raft of tests, including TFTs, myeloma screening, cancer marker tests etc.   All came back reassuringly ‘normal’.

Shortly afterwards, I developed a ‘whooshing’ sound in my right ear, which I could stop if I pressed on an artery just in front of my ear!  It was really weird! 

Despite my lovely new GP doing everything she could to get to the bottom of what was going on, it wasn’t until I had a near miss whilst driving in June 2022, and the bone around what was now a boggy dent began to crumble under my finger when pressed, that anything really helpful was done.  I knew something was very wrong.  At this point, I was advised to stop driving and was referred on the 2-week wait pathway and had an MRI, which showed a mass measuring 4.5cm x 8cm x7cm (about the size of a medium egg!)  pressing on my visual cortex that had effectively eaten through my skull and was told it was a benign slow-growing tumour called a meningioma[6].  I was put on the waiting list for a non-urgent consultation with a neurosurgeon.

I had an urgent whole body CT scan that showed some shadows on my liver and lungs. The liver shadows turned out to be a cluster of blood vessels.  The lungs have not been investigated as the shadows ’are too small to meet the criteria for further investigation!’

By now, things were changing with each week that passed. I was getting visual hallucinations.  I had lost some of my peripheral vision so I would miss left-hand turns on paths I knew like the back of my hand.  I would not notice the character on the left of the screen on TV or see people seated to the left of me.  I was bumping into things and hitting my head on e.g. open cupboard doors in the kitchen etc. 

I was assigned a Clinical Nurse Specialist (CNS) and we spoke weekly as I felt my tumour was fast growing, not slow as they kept telling me. Eventually, she arranged for my appointment to be brought forward and I saw the neurosurgeon in July 2022.  My lovely CNS was in attendance.  As soon as my husband and I sat down my surgeon showed us the scan and even an untrained eye would see the tumour immediately.  What was harder, but evident to see, was the hole in my skull that had developed!

The surgeon told me: ‘This has got to come out. If it doesn’t, you’ll be dead within a year.’ He then pointed out the hole in my skull on my scan and said he thought it was an ‘Atypical Meningioma’[7] which would be benign, or it ‘could be bone cancer.’  We would not know for certain until the pathology lab had examined it.

I underwent a cranioplasty[8]  in September 2022.  It was a very long operation (but they managed it!) but I did not wake up and was sent to ITU and put in an induced coma.  My intracranial pressure started rising so after three days of watching, waiting and seeing, I was taken back to theatre to have the plate taken out to relieve the pressure.  At this point, they discovered I’d had a bleed and a clot which they started treating straight away, but this was quite delayed.

I developed ventilator-related pneumonia and became aggressive every time they tried to wake me up!

Eventually, having prepared my husband for the worst, the doctors managed to wake me up and I started my rehab.  I had weakness in my right shoulder and still have a visual impairment, having lost part of my peripheral vision on the left.

When I woke up, I was told the tumour was a metastasis from papillary thyroid cancer. I was referred to ENT to have the whole of my thyroid removed in November 2022 – the results from the pathology lab came back as Poorly Differentiated Metastatic Thyroid Cancer. This is inevitably harder, but not necessarily impossible to treat.

I had what they call an ablation dose of radioactive iodine treatment. More recently this was followed up with a radioiodine dose (5000Mbq). This was a bit tougher to tolerate than the ablation dose as it really affected my salivary glands, so I felt like I had a hangover whilst coming down with a nasty cold.  However, that only lasted 48 hours and responded well to over-the-counter pain relief.  I had a dry mouth for a couple of weeks but that has resolved.  Now I just have the fatigue to deal with, which is not too bad.

My thyroglobulin (blood cancer marker) has remained at a moderate level of 87 and my antibodies remain at less than 15. My consultant will not be drawn on whether this cancer will respond adequately to RAI but is adamant this is still the best treatment for me at the moment as I do have some uptake.

A follow-up uptake scan has revealed a tumour on my rib and a micro tumour on my lung.  I will be having another whole-body CT scan in four months with more blood tests. If my thyroglobulin levels drop to around 40 over the next six months, and nothing nasty shows up on CT, they will continue with RAI every 6-12 months.  I understand that my doctor does not expect to cure my cancer but hopes to be able to control it.  It feels like he is working on a wing and a prayer and is treating PDTC like differentiated thyroid cancer, but I believe this is the accepted standard/approach at present. However, I am feeling well at the moment and preparing to reapply for my driving licence and to go back to work in a couple of months.

So, you can see that I really did need my head examining!

I have written this article because I want to raise awareness of the subtle presentation of this disease. It is one of the rarest cancers.  Of the 3000 or so people diagnosed with thyroid cancer a year in the UK, only about 100 of us will receive a diagnosis of PDTC.  But just because it is rare, it does not mean it is not happening!

I feel some of my symptoms; an ever-growing goitre, problems swallowing etc, were sometimes overlooked. I have described the delays in scans and biopsies I experienced as a result of this. As a result, I am calling for clinicians to familiarise themselves with the thyroid cancer referral pathways so that patients can get new or changing lumps assessed without the delays I experienced.

Based on my experiences, I would also encourage them to check patient records more thoroughly.  Had they done this in my case,  I believe the fact that my nodule had doubled in size over three years would have been noticed and I would have had a neck CT scan sooner.  I feel it’s possible I would have been cured by now had they caught it when it was still papillary thyroid cancer.

I would also like far greater awareness and research into PDTC. NICE guidance is pitiably lacking and does not even mention PDTC, only papillary, follicular, medullary and anaplastic thyroid cancer. I have also found very little patient literature on the subject. This has to change in my opinion.

Above all, I would encourage you as patients to be a ‘boomerang’. Keep asking questions of your clinicians; ‘What did my last results show?’, ‘Will I need further investigations?’, ‘What symptoms should I be looking out for? etc.    

I have learned to walk, talk, eat, wash, dress and write again and I have achieved this because I am a physio and knew immediately what I had to do, but most others would not have that advantage!  I am lucky to have come out of this relatively unscathed but still have a long way to go.  If this prevents even one person having to wait as long as I did for a thyroid cancer diagnosis, then I have achieved my goal.

If you have read this far, thank you for your time and I hope you find it helpful.

BTF medical advisor comment

We are sorry to read about Judy’s long journey to get a diagnosis and it does sound like things could have been picked up more quickly. We would like to reassure anyone reading this that there is a clear referral pathway for thyroid lumps (nodules) and swellings (goitre).

Any lumps that appear on the neck, or changes to these lumps, should be assessed by a doctor. This will usually involve a physical examination and blood tests (thyroid function tests). Where appropriate, patients will be referred on for further investigations. The ‘NICE guidance - Suspected cancer: recognition and referral’ clearly states ‘Consider a suspected cancer pathway referral (for an appointment within 2 weeks) for thyroid cancer in people with an unexplained thyroid lump.

Clinical concerns would be any of the following:

Same day referral to Ear, Nose and Throat (ENT)

-          Stridor (a noisy high pitched sound when breathing)

Two-week referral

•  Unexplained hoarseness or voice changes associated with a goitre
•   Cervical lymphadenopathy  (abnormal enlargement of lymph nodes in the head and neck usually >1 cm) associated with a thyroid lump
• Recent, rapid growth of a painless thyroid lump
• Thyroid nodule in a child

Non-urgent referrals

•  Patients with nodules who have abnormal thyroid function tests. These patients should be referred to an endocrinologist as thyroid cancer is very rare in this group
• Patients with a history of sudden onset of pain in a thyroid lump (this is likely to have been caused by bleeding into a benign thyroid lump).

Further investigations may include an ultrasound scan. Results from these investigations will be assessed using The British Thyroid Association’s Guidelines for the Management of Thyroid Cancer 2014. Depending on the ultrasound grading, some patients will be referred for a fine needle aspiration cytology.

Anyone can get thyroid cancer but you might be more likely to get it if:

• you are a woman and have not been through the menopause
• you have a condition that affects the thyroid such as a swollen thyroid (goitre), Hashimoto's disease or nodules (non-cancerous lumps) in or on your thyroid
• you have a sibling, parent or child who has had thyroid cancer
• you have had previous radiation treatment to the neck, especially as a child
• you have had certain cancers before such as breast cancer, oesophageal cancer, testicular cancer or non-Hodgkin lymphoma

So, we would like to emphasise to patients and primary healthcare professionals alike the importance of getting any new or changing neck lumps checked and referred for investigation. This will help to get faster diagnosis and treatment of all types of thyroid cancers, including PDTC. It will also give reassurance to the many patients whose lumps are found to be non-cancerous after these investigations have taken place.

Find more information about PDTC

References

NICE guidance – Suspected cancer: recognition and referral

NICE guidance – thyroid disease: assessment and management

BTA Guidelines for the Management of Thyroid Cancer 2014