We are very grateful to anyone who gifts us their My Story. The following stories give you a flavour of the variety of journeys with MTC that different people experience. We hope you find them interesting, useful and maybe even inspiring. Writing about your experiences of living with a rare cancer can be cathartic. If you would like to write about your story, please download our template and send it to Jo Grey at the AMEND HQ. Thank you
Brushing my teeth, I glanced at myself in the mirror and spotted a little lump under my chin. Confused, I leaned closer to get a better look at my reflection, feeling the soft bump with my hand. ‘Must be just a swollen gland’ I thought. ‘Maybe the kids and I have picked up an illness?’
Waking up my brood – Jacob, 15, and twins, Poppy and Lola, 12 – I peered under their chins to see if they had the same lump. ‘That tickles!’ Lola giggled as I felt for a bump. But none of them had one. ‘What on earth is it then?’ I thought confused.
Dropping my kids off at school I booked an appointment with my GP. ‘Better safe than sorry!’
Later that morning I went in for the check-up. Examining my throat, the GP didn’t give anything away, but then he left the room for a minute and came back in with a serious look on his face. ‘I’m going to fast-track you for a second opinion’ he said. I could feel panic rising inside me but I didn’t let it overwhelm me.
I had to wait 10 days before I could be seen by a doctor at Musgrove Park Hospital, Taunton. My mind kept whirring – I couldn’t help but imagine the worst. ‘It’s probably nothing’ I tried to reassure myself. After all, I felt just fine otherwise.
Following my ultrasound tests, I was booked in for a Fine Needle Aspiration (FNA). Another 10 days passed as I awaited a diagnosis. Googling my symptoms, nothing serious showed up. ‘They must be taking precautions’ I sighed with relief.
Finally, in October 2020, I was ushered into a hospital room to find out my results. When I saw a nurse standing there with the consultant though, I started to get suspicious that something was wrong. ‘Julie, I’m so sorry…’ the consultant said, ‘…you have medullary thyroid cancer.’ I blinked back in shock. ‘Cancer…’ I stuttered. But I was only 48 and I didn’t have any symptoms.
‘It’s rare’ the consultant explained, ‘We will need to do a CT scan to check if the cancer has spread.’ I tried to take everything in as they explained more about the disease. All I could think about was my three children. I was a single mum – they couldn’t lose me. ‘We have a family holiday booked next week. Can I still go on it?’ ‘Yes, that’s fine’ he said, ‘We’ll see you when you get back.’
I felt numb as I left the hospital. Arriving home, I sat in front of my three children on the sofa. ‘I’ve got cancer’ I said. ‘Will you be okay?’ Poppy asked me. ‘I don’t know’ I said, cuddling them all close.
The following week, the four of us flew out for our family holiday to Cyprus, along with my parents, Irene and Bob. Stepping off the plane, I breathed in the warm sea air, and felt a sense of calm wash over me. This is bliss.
But just a day later, I was lazing by the pool when my phone rang. ‘We’ve just had your CT results back’ the nurse said. ‘The tumour has spread to your spine and is compressing your spinal cord, and it could even snap if it’s jolted.’ ‘What does that mean?’ I asked, panicking. ‘You’ll have to be really careful’ she said. ‘We’ll need you in for surgery as soon as you’re back’. Putting the phone down I turned to my mum. ‘It’s spread’ I said through tears, ‘and I can’t move too suddenly either, otherwise my spine might snap’. ‘Oh Julie’ she said, wrapping her arms around me. I felt my children and Dad’s arms around me too as they joined the hug. We must have looked like lunatics, hugging and crying beside the pool, in a lovely, hot, sunny resort. For the rest of the holiday I walked around like an ironing board, terrified to swim. Normally, I’d be the first one up on a banana boat, but instead I watched from the sidelines as my children splashed about. I was terrified by any slight movement I made.
As soon as I arrived back in the UK, I was taken into hospital for an MRI scan which revealed that the cancer had also spread to my lungs. The next day I had surgery to remove the tumour from my spine. It was a whirlwind – I hardly had time to think. When they first told me I had cancer, I hadn’t worried too much. I’ve always been a positive thinker. But the moment I found out that it had spread, I panicked.
My step-mother had bravely battle breast cancer but sadly, in the end, she lost her fight. Now, all that was going through my head was that I wasn’t going to make it.
In November 2020 I had a thyroidectomy and lymph node dissection to remove the tumour from my thyroid at the Royal Devon & Exeter Hospital, Exeter, and although it left me exhausted, I was otherwise okay. I didn’t look or feel like somebody who had cancer. But I do – and it is incurable.
Since my surgeries, the doctors have put me on watch to keep an eye on things. they wanted to avoid drugs but in March 2021 I started to get backache and a compression in my ribs. I started to think that drug treatment could be my last resort, to give me a bit of my old life back.
Scrolling through Facebook Group comments, I read through comments from people talking about drugs like cabozantinib. These people had been living with cancer for years because of it. As I read their stories my heart leapt. ‘This could be it!’ I thought.
Reaching out to the Royal Marsden Hospital, Surrey, I met a doctor who approved me to go onto a clinical trial for selpercatinib. In May 2021 I started on the trial and I was thrilled when my pain quickly dispersed. The drug won’t work forever, but it’s given me back my quality of life. The cancer will eventually work its way around the drug, but for now I can still be the same mum I have always been to my three children. I’m less active than I used to be but I’m still me.
After eight weeks on the clinical trial I went for a CT scan and doctors found my tumours have shrunk by an incredible 41%. I’m so thrilled and it makes me hopeful for the future too. All I want is to be here for my kids as long as I can and I’ll do anything to make that happen.
From Pick Me Up! magazine: 12 August 2021
People with rare cancers like MTC often find it helpful to hear about the experiences of others with the same or similar diseases. In addition, many people find it a rather cathartic or healing experience to write down their experiences of their disease.
Whatever the motivation, we are always happy to receive your story and have developed a Word template below with some prompt questions in case you’re not sure where to start. Please send your story* in to Jo Grey.
*stories may be edited to preserve anonymity where required
MY STORY TEMPLATE