Charlotte Rooney can’t remember exactly what she was doing when she first became aware of the sensation of a blocked nose in January this year.
‘I was otherwise healthy, so I wasn’t overly worried at first,’ says Charlotte, 34, a primary teacher and mother of one. ‘I assumed it was just a seasonal cold and sniffle and that it would clear up on its own.’
But after three weeks of living with a subtle block in her right nostril – noticing that it sounded different to the other nostril when she expelled air out of her nose – and with no other signs of a cold, she went to the doctor.
‘The doctor couldn’t see anything wrong in my nose and gave me Naseptin Nasal Cream to clear it,’ she says. (Naseptin is a cream used to treat bacterial infections, which can be a cause of blockages in the nose.)
After two weeks, not only was there no improvement, but Charlotte, from Banbury, Oxfordshire, also developed a tickling sensation around her nostril. However, when she sought help at her surgery again a nurse assured her ‘it was nothing serious’.
By the end of February Charlotte also had a feeling of ‘an electric shock and burning sensation on the right side of my face, under my eye and up to my ear’.
Another visit to the doctor at the end of February resulted in a diagnosis of trigeminal neuralgia – a condition which causes short, sharp bursts of pain in the face, usually because of pressure on the trigeminal nerve (which communicates sensations of pain and touch from the face to the brain).
But Charlotte wasn’t convinced.
Charlotte Rooney, 34, from Banbury in Oxfordshire, had a suspicion there was something in her nose pressing on a nerve and causing pain – it turned out to be cancer
‘I thought that something in my nose was pressing on a nerve and causing the pain,’ she says.
So Charlotte asked for a referral to see an ear, nose and throat (ENT) specialist – and she was by now so worried that she paid £550 to get a private appointment rather than face NHS delays.
Weeks later Charlotte’s decision was vindicated. After a nasal endoscopy – where a probe with a camera on the end is inserted up the nose – the consultant spotted a growth in her right nostril. In April, following further scans and a biopsy, she was diagnosed with a rare type of head and neck cancer, called adenoid cystic carcinoma (ACC).
What’s more, she was warned she might not make it through the year without treatment.
‘I was in total disbelief at first,’ says Charlotte, who was ‘convinced there was some mistake’.
‘I don’t think I cried, I just sat there in shock looking out of the window. It didn’t feel real.’
‘My four-year-old daughter needed me and I kept thinking “how could this be happening to me?”’ says Charlotte.
ACC is a rare, slow-growing cancer that mainly affects the salivary glands, but can also appear in the nasal sinuses, and, more rarely, in the breast, tear glands, or airways, according to the charity Oracle Head and Neck Cancer UK.
Charlotte’s was in her right sinuses – the hollow areas in the bones around the nose.
‘The symptoms vary depending on where it occurs, but common symptoms include lumps or swelling – often in the mouth, neck or face,’ says Clare Schilling, a consultant oral and maxillofacial surgeon specialising in head and neck cancer at University College London Hospitals NHS Trust.
‘The salivary glands are located in the upper neck and face – a new lump in front of or below the earlobes could indicate an early salivary gland tumour.’
Other signs include pain or numbness, as ACC grows along nerve pathways. And depending on where a tumour is growing, for example in the mouth, throat or airways, it can cause difficulty swallowing, speaking and breathing.
‘If it occurs near the eyes, it can cause vision problems (such as double vision),’ adds Ms Schilling.
‘Since ACC is slow growing, these symptoms might develop gradually over many months.
‘While ACC is rare, it’s essential to recognise its unique characteristics, and what makes it distinct is its tendency to invade nerve fibres, sometimes causing pain or sensation changes, in the affected area.’
This is what was causing the tickling and burning sensations Charlotte noticed before her diagnosis.
‘In the later stages, the cancer can cause damage to the main nerve which moves the muscles of the face, resulting in facial weakness that can resemble the signs of a stroke,’ Ms Schilling adds.
‘Any facial lump and new facial weakness must be taken extremely seriously.’
Despite being slow growing, ACC can behave aggressively and may spread to other areas, such as the lungs and bones. The disease often spreads along nerve pathways, which makes treatment challenging and increases the risk of recurrence.
As Charlotte’s diagnosis demonstrates, ACC can affect anyone, although it’s most commonly diagnosed in adults between 40 and 60 years old, and women are slightly more likely to develop ACC than men, though it’s not understood why.
In fact, the causes and risk factors for ACC are still largely unknown – unlike some cancers, it doesn’t have strong links to lifestyle factors such as smoking or family history.
‘Although we’re learning more about ACC each year, there’s still much to uncover about why it develops and how best to treat it,’ adds Ms Schilling.
The most effective treatment is surgery to remove the tumour, followed by radiotherapy to lower the chance of it coming back.
But it’s not always possible to operate. Because of its rarity and complexity – with only about 87 new cases diagnosed each year in the UK – managing ACC needs a specialised team and long-term follow-up.
Charlotte initially put it down to a seasonal cold, but after three weeks of living with a subtle block in her right nostril, she went to the doctors
Initially, Charlotte told everyone close to her about her diagnosis, apart from her daughter, who she felt was too young to understand.
‘Everyone was shocked and trying to make sense of it – some people didn’t know what to say,’ says Charlotte, who lives with her long-term partner Martin, 37.
Just four days after finding out she had cancer, Charlotte met an oncologist and a head and neck surgeon who talked about treatment more positively, confirming that surgery was an option, with the aim of removing the bulk of the cancer, then radiotherapy could get rid of the rest of it.
‘This gave me hope,’ says Charlotte.
However, in June, when Charlotte had surgery, surgeons discovered the tumour had grown much bigger than expected. It had spread across the nerve and was going as far as the carotid artery, which takes blood to the brain. The operation was stopped early, as the team didn’t think it was safe to continue.
‘It was a huge blow, but a month later I started six weeks of high dose radiotherapy,’ says Charlotte.
Whilst recovering from the radiotherapy, Charlotte decided to organise a charity fundraiser festival during which she would sing. She’d always loved singing at home in the kitchen and decided she wanted to perform – something she’d never done before and which would be a huge challenge, given the side-effects of her treatment.
‘The radiotherapy had left my mouth terribly burnt and sore inside so to begin with I struggled to swallow, eat and speak properly,’ she says. ‘But against all the odds I managed to sing a number of songs including Roads by Portishead, Let it Go from Frozen, and All That Jazz from Chicago, to which my daughter joined in dancing.’
The event raised more than £6,000 for Oracle Head and Neck Cancer UK and was ‘an extremely emotional day’, recalls Charlotte.
And a little over two weeks later, after an MRI scan, Charlotte received the positive news that – exceeding everyone’s expectations – the scan couldn’t detect any cancer at all. ‘It was a big shock,’ she says. ‘They showed me a scan with a whole patch of grey, which previously had been all white with cancer, and now it is healing bone. It’s the best news I can have.
‘It’s probable that there is still some cancer remaining, but it’s too small to be made out and is likely not growing.
‘I’ll have an MRI every three months for the indefinite future,’ says Charlotte. ‘They do expect it to come back. ACC regularly recurs, but I don’t know when that will be.’
She adds: ‘I want everyone to listen to their body and trust their instinct. You really do need to push for answers if you know something isn’t right.’
