One nostril was blocked and itchy. At first I was told it was ‘nothing serious’…just that doctors discovered a cancer that could be fatal within a year. These are the warning signs everyone should know about

Charlotte Rooney can’t remember exactly what she did when she first became aware of the feeling of a stuffy nose in January this year.

“I was otherwise healthy, so I wasn’t too worried at first,” says Charlotte, 34, a primary school teacher and mother of one. “I assumed it was just a seasonal cold and runny nose and that it would go away on its own.”

But after three weeks of living with a subtle blockage in her right nostril – during which she noticed it sounded different from the other nostril when she let air out of her nose – and with no other signs of a cold, she went to the doctor.

“The doctor couldn’t see anything on 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 nasal congestion.)

After two weeks, not only was there no improvement, but Charlotte, from Banbury, Oxfordshire, also developed a stinging sensation around her nostril. However, when she sought help with her surgery again, a nurse assured her that “it was nothing serious.”

At the end of February, Charlotte also had the feeling of ‘an electric shock and a burning sensation on the right side of my face, under my eye and up to my ear’.

Another visit to the doctor in late February resulted in a diagnosis of trigeminal neuralgia – a condition that causes short, sharp bursts of pain in the face, usually due to pressure on the trigeminal nerve (that carries sensations of pain and touch from the face to the brain).

But Charlotte was not convinced.

“I thought something in my nose was pressing on a nerve and causing the pain,” she says.

So Charlotte asked for a referral to an ear, nose and throat specialist (ENT) – and she was so concerned by now that she paid £550 to get a private appointment rather than face NHS delays confronted.

Weeks later, Charlotte’s decision was upheld. After a nasal endoscopy – in which a probe with a camera at the end is inserted into the nose – the consultant discovered a growth in her right nostril. In April, following further scans and a biopsy, she was diagnosed with a rare form of head and neck cancer called adenoid cystic carcinoma (ACC).

In addition, she was warned that without treatment she might not survive the year.

“At first I was in total disbelief,” says Charlotte, who was “convinced a mistake had been made.”

‘I don’t think I cried, I just sat there looking out the window in shock. It didn’t feel real.’

‘My four-year-old daughter needed me and I kept thinking: “How could this happen to me?”’ says Charlotte.

ACC is a rare, slow-growing cancer that mainly affects the salivary glands but can also occur in the paranasal sinuses and, more rarely, in the breasts, lacrimal 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.

‘Symptoms vary depending on where it occurs, but common symptoms include lumps or swellings – often in the mouth, neck or face,’ says Clare Schilling, an oral and maxillofacial surgeon specializing in head and neck cancer at University College London Hospitals NHS Trust.

‘The salivary glands are located at the top of the neck and face. A new lump in front of or under the earlobes may indicate an early salivary gland tumor.’

Other symptoms include pain or numbness because ACC grows along nerve pathways. And depending on where a tumor grows, for example in the mouth, throat or airways, it can cause problems with swallowing, speaking and breathing.

“If it occurs near the eyes, it can cause vision problems (such as double vision),” Ms. Schilling adds.

‘Since ACC grows slowly, these symptoms can develop gradually over many months.

‘Although ACC is rare, it is essential to recognize its unique features, and what sets it apart is its tendency to invade nerve fibers, sometimes causing pain or sensory changes in the affected area.’

This is the cause of the tickling and burning sensations that Charlotte noticed before her diagnosis.

‘In the later stages, the cancer can cause damage to the main nerve that moves the muscles of the face, resulting in facial weakness that can resemble the signs of a stroke,’ adds Ms Schilling.

‘Any facial lump and new facial weakness should be taken extremely seriously.’

Despite growing slowly, ACC can behave aggressively and spread to other areas, such as the lungs and bones. The disease often spreads along nerve pathways, making treatment difficult and increasing the risk of recurrence.

As Charlotte’s diagnosis shows, ACC can affect anyone, although it is most often diagnosed in adults between the ages of 40 and 60, and women are slightly more likely to develop ACC than men, although it is not clear why.

In fact, the causes and risk factors for ACC are still largely unknown; unlike some cancers, it does not have a strong relationship with lifestyle factors such as smoking or family history.

‘Although we learn more about ACC every year, there is still much to discover about why it develops and how best to treat it,’ adds Ms Schilling.

The most effective treatment is surgery to remove the tumor, followed by radiotherapy to reduce the chance of recurrence.

But surgery is not always possible. Due to its rarity and complexity – with only around 87 new cases diagnosed each year in Britain – management of ACC requires a specialist team and long-term follow-up.

Initially, Charlotte told everyone around her about her diagnosis, except her daughter, who she said 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 with an oncologist and a head and neck surgeon who spoke more positively about the treatment and confirmed that surgery was an option, with the aim of removing most of the cancer, followed by radiotherapy could disappear. of the rest of it.

“This gave me hope,” says Charlotte.

But in June, when Charlotte had surgery, surgeons discovered that the tumor had grown much larger than expected. It had spread along the nerve and reached the carotid artery, which carries blood to the brain. The operation was stopped early because the team did not feel it was safe to continue.

‘It was a huge blow, but a month later I started six weeks of high-dose radiotherapy,’ says Charlotte.

While recovering from radiotherapy, Charlotte decided to organize a charity festival where she would sing. She had always enjoyed singing in the kitchen at home and decided she wanted to perform – something she had never done before and which would be a huge challenge given the side effects of her treatment.

“The radiotherapy left my mouth terribly burned and sore inside, so at first I had trouble swallowing, eating and speaking properly,” she says. ‘But against all odds I managed to sing a number of songs including Roads by Portishead, Let it Go by Frozen and All That Jazz from Chicago, which my daughter danced to.’

The event raised more than £6,000 for Oracle Head and Neck Cancer UK and was ‘an extremely emotional day’, Charlotte recalls.

And just over two weeks later, after an MRI scan, Charlotte received the positive news that – beyond everyone’s expectations – the scan could reveal no cancer at all. “It was a big shock,” she says. ‘They showed me a scan with a very gray spot, which was previously completely white due to cancer, and now the bone is healing. It’s the best news I can have.

‘It is likely that there is still a piece of cancer left, but it is too small to see and is unlikely to grow.

“I will have an MRI every three months indefinitely,” says Charlotte. ‘They expect it to come back. ACC will come back regularly, but I don’t know when that will be.’

She adds, “I want everyone to listen to their bodies and trust their instincts. You really have to push for answers when you know something is wrong.’