Jess is a paediatric intensive care nurse and previously worked as a paediatric endocrine specialist nurse. She shares her experience of receiving a diagnosis of papillary thyroid cancer of the thyroglossal duct remnant.*

How was your cancer discovered?

I have had recurrent tonsilitis for a few years and was experiencing another episode. At the time GPs were trying not to see patients in surgeries unless necessary due to Covid-19. I started on a course of antibiotics and my glands started to go down as the illness passed. However, my left lymph gland felt enlarged and I could feel it whenever I swallowed. After a discussion with my GP, we decided to wait a little while longer to see if it would resolve itself. A few weeks passed and it felt like the swelling had increased in size, so I contacted my GP. I was assessed and referred for an urgent ultrasound scan. From the doctor’s tone of voice ,and the fact they wanted to perform the biopsy straight away, I could tell something wasn’t quite right. I put it down to being a blocked lymph node and tried not to think about it too much. I had been booked to discuss the biopsy results over the phone but was asked to come into the hospital instead. I remember walking into the consultation room and being told the diagnosis but not much after that.

What type of treatment did you receive?

I had surgery the same week in the form of a Sistrunk’s procedure (a common option chosen for this type of surgery) to remove the thyroglossal duct cyst and part of the hyoid bone. I was initially told I would need my thyroid gland removed and would be put onto lifelong thyroxine treatment. There was also the possibility of needing some of my tongue removed. However, I was exceptionally lucky. The cancer was all removed with the surgery, allowing me to keep my thyroid gland and tongue.

How did the procedure go?

Pre-surgery I had been told I might be able to go home the same day. However, I had a lot of nausea and vomiting ands o was kept in overnight. Although unexpected, I also had a lot of swelling under my tongue and under my chin. So chewing and swallowing food was difficult for a while.

What was the hardest aspect of your diagnosis and subsequent treatment?

Telling my friends and family about my diagnosis was tough(I still find it difficult to tell people today). Due to the pandemic and my surgery being just four days away, I had to be swabbed for Covid-19 and isolate before my surgery. So, I had to tell most of my friends and family over phone and video calls. To make it easier, I set up a messaging group where I posted updates.

Is your treatment continuing? I have a six month follow up ultrasound scan and appointment and I monitor myself for new lumps and symptoms of hypo/hyperthyroidism.

Were you able to get the support you needed?

Both my GP and ENT team were great. My colleagues who knew were so supportive too. My boy friend and my house mates dropped everything to help me before, during and after my surgery. They took care of me when I could not take care of myself. My friends and family further away rang me regularly and sent me gifts and jokes to cheer me up. I’m eternally grateful to them all.

How do you feel now?

The whole process happened so quickly. I feel that I’m still processing the mental and emotional impact of my cancer diagnosis. I take it day by day and make use of my support network, meditation and other mental health self-care techniques. Physically, the swelling has reduced and the scar from my surgery is healing well. I’m not quite back to my levels of physical activity and do find myself feeling exhausted by tasks that previously wouldn’t have tired me out. When I’m feeling frustrated, I try to remind myself that regaining stamina is gradual.

Did you find it helped having worked in paediatric endocrine care?

Yes, I was able to understand where the tumour was and knew about interpreting blood test results, symptoms and management of hypothyroidism. My mum is also on levothyroxine so I had seen how it affected her as well as previous patients and their families.

Do you have any words of encouragement for people facing a cancer diagnosis?

Early intervention and treatments are key. That’s why it’s so important to see the GP about lumps or cancer symptoms, even in the middle of the pandemic. I felt like I was wasting medical professionals’ time; nothing was going to be wrong with me. After my diagnosis, a few people said to me ‘I bet you’re so glad you went to the GP that day’, and I am. I have often thought about how different my outcome would have been that day if I hadn’t gone. Thankfully, I will never have to know the answer. So, if you are concerned please contact your GP. You will thank yourself later.

* While a baby is developing in the womb the thyroid gland begins at the base of the tongue. Before birth, the thyroglossal duct forms a path from the thyroid gland to move from the base of the tongue to the usual position below the voice box and above the breastbone. In most people, the thyroglossal duct disappears before birth. In around 1 in 14 people the thyroglossal duct remains and is called the thyroglossal duct remnant (TGDR). More than half of TGDRs contain thyroid tissue, which has the ability to produce thyroid hormones. As TGDRs contain thyroid tissue, cancerous growth can happen in them as well. Cancer of TGDR are extremely rare and can occur in 1 or 2 out of every 100 TGDRs.

For more information on thyroid cancer please see our thyroid cancer resources

Can you help us to help you, please?

We rely on donations to fund our work providing information and support to help people live better with thyroid disease. Please consider making a donation or becoming a member

Please donate

Become a member