My doctor told me I had dandruff but the lumps were cancer

Lizzie Burbeary, 29, works in sales support in the insurance industry. She lives in Chesterfield with her partner Scott, also 29. At first, her GP thought the lumps on her neck and head were down to dandruff or a shampoo allergy, but several months later she received a shock diagnosis.

Laying under my duvet to avoid the light because it hurt my eyes, I really didn’t know how much longer I could stand the pain. I had suffered from migraines before, but this was like nothing else. I sent my partner Scott to the pharmacy to see if he could buy anything to help but after four or five hours of pain, I dialled 111.

I described all my symptoms I’d been suffering from for months – the migraines, hair loss, lumps up and down my neck and head which the doctor had said was dandruff – and fatigue. To my surprise, they sent an ambulance straight away. It was a Friday night so it took a couple of hours but when the paramedics checked me out, they agreed that they would take me to A&E straight away.

At the hospital, the doctors did more blood tests and sent me for a CT and an ultrasound. Within two hours, a doctor was at my bedside telling me that they thought I had non-Hodgkin lymphoma and when I asked what that meant, he said: "Oh, it’s a type of cancer."

I couldn’t quite take it in. It was October 2021, but in the months leading up to feeling unwell, I was probably at one of the fittest points of my life, having done couch to 5k during lockdown and walking every day with my sister and her dog.

But that summer, I developed Covid for the first time and my health deteriorated rapidly. The main symptom was extreme exhaustion, like no tiredness I’d ever felt before. Everyone moans about being tired, but this was different. Some days I’d need help from Scott to get me dressed, undressed and into the shower for work. Even at the weekends when we slept in, I’d be having three-hour 'naps' in the afternoon.

Hair falling out

My hair started to fall out in big clumps when I was washing it or brushing it and I started to get lumps, like hard marbles down my neck and scalp. They weren’t painful but I visited my GP every single week for ten weeks who seemed to think I might be allergic to my shampoo or conditioner. They wondered whether it could be dandruff and prescribed me an antibiotic shampoo and said my exhaustion must be down to Long Covid but I really wasn’t convinced.

My health continued to deteriorate. I distinctly remember being at my desk one day at work and feeling so tired that I could have slept on the desk. I said to my manager that I knew my own body and knew something was wrong but even blood tests at the doctors hadn’t picked up anything serious. My GP didn't realise it was cancer.

As the doctor in A&E told me, time seemed to stand still. Due to Covid restrictions, no one – not even my partner or mum – was allowed to be with me so I was completely alone, trying to take this news in. The next few hours are a blur. I really think my brain has blanked it out to try to protect me.

I do recall ringing Scott in hysterical tears and saying: "They’ve said it’s cancer!" and he couldn’t believe it. I also rang my mum who was in shock too. My dad lives in Cyprus and was in hospital himself with a heart condition so I thought it best not to ring him yet.

Finally a diagnosis

The nurses took me to a ward and I slept the entire next day. At one point the nurses even had to wake me up to check I was alright because I had been asleep for so long.

Mum was allowed to visit the next day and brought fresh clothes and an iPad. I was moved onto a ward and then my own room where doctors carried out more tests including a biopsy on my neck lumps and more scans.

I kept questioning myself: 'Why me? What have I done in life to deserve this?' I’d just been promoted, was in a lovely relationship and we’d recently moved into a new flat. It really didn’t seem fair.

After a week or so, the doctors finally had an answer: I had acute lymphoblastic leukaemia (ALL) and would be treated at Royal Hallamshire hospital, which had a team who had a much better understanding of the disease.

More bombshell news

I’ll never forget the car journey from Chesterfield Hospital to Royal Hallamshire. Dad had flown over from Cyprus to be with me, and he and mum – who normally don’t speak – were squished into the back of my sister’s car, while I was in the passenger seat with my sister driving. Bizarrely, it wasn’t a sad moment. We were all together and my sister and I were dancing and singing away in the front of the car to the music on the radio. I was trying to enjoy my last moments of freedom with my family.

At the new hospital, I was put in room 17, which I felt was a good omen as it’s one of my lucky numbers. It’s where I met my consultant, Mr Morley, who gave me some fairly positive news – he told me the survival rate for this kind of cancer was 90% and the younger you are, the better your chances. I had just turned 27 at the time, but of course, I still worried that I was going to die.

He assured me that they would do everything they could to make sure that wouldn’t happen. However I would be treated for two to three years, starting with six weeks of chemo in hospital. It was a shock to hear that it would be such a long time and immediately I thought about work and finances. How would we cope? But there was more news as my consultant told me – bluntly, but kindly – that I was going to lose my hair and that I might not be able to have children as they didn’t have time at this point to do egg retrieval.

Accepting a new reality

At the time, I accepted this pretty well, knowing that it made sense to get started on treatment straight away. But as the news settled in, it made me regret not having children earlier in my life. You never think that opportunity will be taken away from you but when it is, inevitably you feel sad.

Scott would love children one day but is incredibly supportive and who knows, as technology and fertility medicine changes, we may be able to have kids. But it’s something we will think about in the future.

In the first few weeks in hospital, I was given a Hickman line which is like a port where all the drugs go. It meant no more stabbing of needles. Then I had one bag of chemo once a week. I had no side effects at all for a while but eventually my hair began to get more patchy and I asked the hairdresser to shave it all off.

At the start of 2022, I had a bone marrow biopsy to see how the treatment had affected the leukaemia in the bone marrow. Then I started on a new two-month course of treatment as an outpatient. This time, Scott took three months off work to take me to hospital five days a week. I had more stays in hospital for more intense chemo but by late 2022, a biopsy could see no traces of leukaemia. It was such a relief.

Getting back to normal life

Now in May 2024, I’m still on a maintenance plan, needing to have blood tests every four weeks and chemo top-ups every three months. But, I’ve been told that my treatment should – hopefully – end of 3rd July this year, nearly three years from when I first started having symptoms.

I can’t tell you how quickly the time has flown by but mentally, the illness has affected me badly. I have terrible health anxiety and worry about every little bruise or mark or if I lose a bit of hair in the shower. The statistics for relapse of this type of cancer are quite high so it’s inevitable that I’ll be worried. But on the whole, I’m really trying to be positive about everything.

I’m back at work three days a week and my manager has been incredible, fighting my corner every step of the way. I got full sick pay for a few months and was then able to apply for benefits so we have not lost out too much financially.

My hair is growing back. It’s now shoulder length and I’m feeling strong. I’ve got a party planned in July to celebrate with all my friends and family about getting my life back.

As for the doctor who thought my lumps on my head and neck were dandruff, I did speak to her and she was incredibly apologetic. I told her that she really needs to look out for these symptoms in future patients. There were screaming alarm bells that I had leukaemia and I’m upset that it was missed for so long.

My main message to people is to listen to your own body and insist that more tests are done if you know something is wrong. Keep pushing for a second opinion.

Find out more at the research and advocacy charity Leukaemiauk.org.uk.

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