Acute Lymphoblastic Leukaemia Symptoms: Why The Lumps On My Scalp Were Not A ‘Scalp Infection

You know your body better than anyone – but what happens when no one listens? Welcome to Ms Diagnosed: a HuffPost UK series uncovering the reality of medical gaslighting. With new stats showing that 8 in 10 of women have felt unheard by medical professionals, we’re sharing the stories of seven whose lives were nearly lost to the gap between their symptoms and a system that refused to listen. As the UK introduces Jess’s Rule – a new mandate for GPs to ‘rethink’ after a third visit – we’re exploring why the medical system is still failing women and how we can start to fix it.

“Have you tried Head & Shoulders shampoo?,” asked my GP. ‘We think you might have a scalp infection.’

I stared at her, gobsmacked. I had between 20 and 50 hard, pea-sized lumps that kept appearing on my scalp, as well as horrible flaking. I knew it was more than a scalp infection.

“I’ve had a dry scalp all my life,” I said, eventually, “I use Head & Shoulders all the time.”

“Hmmm,” mused the GP. “Well, we’ll prescribe you some shampoo that will hopefully get rid of the lumps.”

I didn’t have a scalp infection. I had Acute Lymphoblastic Leukaemia (ALL); and this was diagnosed following a trip to A&E, after I’d gone to my GP surgery every week for ten weeks to no avail.

My symptoms started in July 2021, when I was 26. I’d had Covid for two weeks – then, things only got worse.

For a start, there were those lumps developing on my scalp; as well as down the back of my ear, down my neck and in my armpits.

I was losing a lot of hair; I had terrible night sweats; I was sick a lot; and I was very fatigued, to the point where my boyfriend was having to help dress me. Even walking 100 metres to my office from the carpark, I’d have to stop and catch my breath.

I first visited my GP that summer. ‘We’ve seen a lot of people come in with exactly what you’re saying,’ she said. ‘We think it could be Long Covid.’

That initially made sense; I’d had Covid, after all. But over the course of the following ten weeks, I went back to the GP again and again and she’d make me walk up and down the corridor to test my blood oxygen levels and my pulse. “You’re fine; you’re fine,” she’d say.

“Well…I’m obviously not fine, because I’m out of breath all the time,” I said, utterly bewildered. Once, I was just sitting on the grass watching my boyfriend playing sports when my watch notified me that my heart rate was too high.

But the GP kept saying, “No, no, you’re fine.” As it later turned out, I had a tumour the size of a melon on my chest.

I went back to the surgery again and again with the same symptoms. I’d be told things like, “You’ve got a history with asthma; we’ll give you an inhaler.”

I was prescribed the same shampoo again for the lumps on my scalp. Another time, they suggested the lumps were an allergic reaction to my hair dye.

I had blood test after blood test, but I kept hearing, “They’re fine, they’re fine, all your bloods are fine.”

Obviously, my blood was not fine.

Every time I left the GP’s office, I felt so let down. It seemed there was no end in sight; I’d just been pushed away again with an inhaler or some scalp treatment.

It was incredibly frustrating and very upsetting – all the more so because I knew, deep down, there was something very wrong. Once, when I was really struggling at work, I said to my manager: “Something’s not right. I know it.”

Another time, I messaged my mum: “What if it’s cancer?”. She replied: “If it was going to be cancer, it would have come back on your blood tests. Try not to worry.”

Those texts will always stick with me. Clearly, on some level, I knew.

In October 2021, I got a migraine at work. I do get migraines, but this was the worst head pain I’ve ever had. I couldn’t even open my eyes. I rang 111 and explained the migraine and all the symptoms I’d had since July; and they sent an ambulance.

I was taken to A&E, where I had a blood test, an ultrasound and a CT scan.

Then, because of Covid restrictions, I was left on my own in a little side room. After about four hours, a doctor came to see me. “We think you’ve got Hodgkin’s lymphoma,” he said.

“I’m sorry…I don’t know what that is,” I said, helplessly.

“It’s a type of cancer,” he said; and then he left. I was on my own trying to process that news; and I burst into floods of tears.

I was taken to the cancer ward, where I stayed for seven days while they did various tests. Eventually, I was diagnosed – not with Hodgkin’s lymphoma, but with ALL.

My treatment lasted for nearly three years, because I had a high percentage of leukaemia in my bone marrow as well as my blood. I had regular chemo, and a lumbar puncture every four weeks to take out spinal fluid and check for cancer in my brain. I also had a Hickman line – which was inserted into a vein in my neck and poked out of little valves in my chest – to administer chemotherapy and take regular blood samples. I never got used to that.

Eventually, I finished my treatment in June 2024 – and I’ve now been in remission for 21 months.

I visit my consultant every six months for blood tests and a check-up, and I have to take antibiotics if I get a cold because my immune system isn’t 100%. But with each month that passes, I get stronger. I’m going to the gym three or four times a week and my hair is so long, which feels amazing.

But while I’m a lot better physically, I still struggle mentally.

Even though my consultant told me my treatment would have been the same whether I’d been diagnosed on Day 1 or Day 100, I’m horrified when I think of how many times I was told by a GP that I was fine, when I unequivocally wasn’t – and, thanks to being misdiagnosed repeatedly, I’m left with health anxiety.

Every time I get a bruise on my leg, I automatically think: ‘The cancer’s back.’ If I ever get hot in the night, I worry that I’m getting night sweats again.

In November, a few symptoms were making me extremely anxious – night sweats, bruising, aching muscles and bones. I couldn’t wait for my next scheduled appointment, so I arranged an emergency appointment with my consultant. After reviewing some blood tests, he reassured me that I was a ‘picture of health’ and had nothing to worry about.

I think I’ll always have this anxiety – I went through such a tough journey, the thought of going back to that is incredibly scary – but feeling my strength returning has helped.

And my advice to anyone else struggling to get answers for certain symptoms is: Trust your instincts, and keep on pushing. Try to get a second opinion; if necessary, go to A&E and tell them about all your symptoms.

I’m so glad I kept pushing. I knew something was very wrong; and it turned out I was absolutely right.

ALL is a rare type of blood cancer, with just 790 new people diagnosed in the UK every year, according to Leukaemia UK. The most common symptoms are fatigue, frequent infections and bruising.