I’m one in a million diagnosed with Langerhans Cell Histiocytosis

Symptoms and diagnosis  

I graduated from the University of Plymouth in the Summer of 2020 and first started getting symptoms in October that year. I suddenly became very thirsty and started craving lots of cold water. Because of this, unsurprisingly, I kept needing go to the toilet. Doctors initially diagnosed me with diabetes insipidus (DI). 

To investigate further, I had to have a biopsy of my pituitary gland in which I was tested for multiple diseases, including Langerhans cell histiocytosis. These tests all came back normal. A couple of months later I started getting bad headaches and a lump under my armpit began to develop. I was told it was a cyst and given some antibiotics.  

I was also incredibly fatigued. Luckily at the time, I was working in the family business so I could work part-time and often sleep upstairs in the staff room when I needed to. But I still knew something wasn’t right. I would often be breathless after going up just one flight of stairs and sometimes I would fall asleep at the desk.  

With what seemed like everything going wrong and my body continuing to deteriorate, I was extremely frustrated that nobody in the NHS could give me any answers. My local hospital back in Somerset were trying their best but were still getting nowhere, as they didn’t understand what was causing the tumour/swelling on my pituitary gland. 

As my symptoms worsened, my parents decided to take me to see a private dermatologist in November 2022, as the lump under my armpit had grown further, started leaking pus, and I had developed multiple lesions on my scalp.  

The dermatologist arranged a biopsy of my scalp and quickly diagnosed Langerhans cell histiocytosis, a rare type of cancer that only affects one in a million in the UK. The dermatologist had only seen this disease from a book during his training and never before in real life, as it is so rare. I never expected to have cancer at such a young age. 

I was both shocked and upset, but also strangely relieved that I finally had a diagnosis. I was so thankful that after two years we finally knew what it was and could start my treatment. My mum, Lorraine, was instrumental in chasing appointments for me and getting the answers I needed. Without her I still might not have got a diagnosis to this day. 

It turns out that the diabetes insipidus was a consequence of the tumour pressing on my pituitary gland, which is the master gland for all your hormones. This also explained my other symptoms and why I was feeling so exhausted.  

Treatment and Teenage Cancer Trust support 

I was quickly referred to St George’s Hospital in Tooting where I met Kyle,  Teenage Cancer Trust’s Clinical Nurse Specialist. He was extremely helpful and talked me through my treatment plan. He also gave me his work mobile number and said that I could phone or text him whenever I needed.  

My Oncology team decided that I needed 12 cycles of chemotherapy. It would be five days of intravenous chemotherapy, with 28 days between cycles.  

Due to contracting COVID19, they had to delay treatment until January 2023. I spent that Christmas period quite anxious, as I found the thought of starting chemotherapy both daunting and scary.  

Kyle arranged for me to have my chemo in the TYA room, a special room for teenagers and young adults, so that I wasn’t in the main room with much older patients. It was nice and private in there, meaning I was able to relax a bit more. My mum was also able to come with me for each session. Kyle would also pop in to visit me, and we talked to pass the time. He didn’t just ask about the medical side of things; he asked how I was coping overall. He was aware that the recent diagnosis and chemo treatment were affecting both my physical and mental health, so he was able to refer me to a psychologist, dietician, and a fitness charity, whilst also chasing appointments for me.  

Peer-to-peer and other support 

I wasn’t well enough to go to the Teenage Cancer Trust’s events during my treatment, but Nicola, Teenage Cancer Trust’s Outreach Youth Support Coordinator, invited me on an organised trip to the zoo once my treatment had finished. There was a group of around 20 young people, and it was so nice to meet and chat to them all. The opportunity to chat to other people my age who have been through similar experiences took a weight off my shoulders as I didn’t feel alone in my illness. I had a great day out and really enjoyed the trip. 

I tried to continue working throughout, but during the week of chemo each month I felt unwell and was often sick. I was also off my food, tired and unable to do much at all. But as the months slowly dragged on, I began to feel much better and more like myself. 

I am so grateful to have such a great support system around me. Both my family, friends and Holly, my girlfriend, have been incredible and supported me throughout. 

Fundraising and where I am now 

At present I am still taking various hormone replacement medications, as my pituitary gland has still not fully healed, but I am hoping that in time it will recover along with some of its functions. 

Having cancer has played an instrumental part in my 20s, but it hasn’t all been negative. I have met so many amazing people and achieved things which I wouldn’t have otherwise, such as completing the Yorkshire Three Peaks Challenge and raising over £3,000 for the MOVE charity. This was a massive accomplishment of mine and a sign that I was starting to get better.  

I am now able to work full-time and take on more responsibility within the family business alongside my dad and enjoy a full social life. I also have two holidays booked for this year and plan on doing some more hikes in my spare time.