Charlotte Rooney can’t remember exactly what she was doing when she first became aware of the feeling of a stuffy nose in January this year.
“She 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 a cold and that it would go away on its own.”
But after three weeks of living with a subtle blockage in his right nostril – noticing that it sounded different from the other nostril when he blew air through his nose – and no other signs of a cold, he went to the doctor.
“The doctor couldn’t see anything wrong with my nose and gave me Naseptin Nasal Cream to clear it up,” she says. (Naseptin is a cream used to treat bacterial infections, which can cause 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 he returned to seek help at his office, a nurse assured him that “it was nothing serious.”
In late February, Charlotte also experienced a sensation of “electric shock and burning sensation on the right side of her face, under her eye and up to her ear.”
Another doctor’s visit 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 (which communicates sensations of pain and touch from the face to the brain).
But Charlotte wasn’t convinced.
Charlotte Rooney, 34, from Banbury, Oxfordshire, suspected something in her nose was pressing on a nerve and causing pain; It turned out to be cancer.
“I thought something in my nose was pressing on a nerve and causing the pain,” he says.
Charlotte then asked for a referral to see an ear, nose and throat (ENT) specialist, and was already so worried she paid £550 to get a private appointment rather than face delays on the NHS.
Weeks later, Charlotte’s decision was justified. Following a nasal endoscopy, in which a probe with a camera on the end is inserted through the nose, the consultant spotted a growth in his right nostril. In April, after 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, they warned him that he might not make it through the year without treatment.
“At first I was in complete disbelief,” says Charlotte, who was “convinced there was some mistake.”
‘I don’t think I cried, I just sat there in shock looking out the window. It didn’t seem 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 sinuses and, more rarely, the breast, lacrimal glands or airways, according to the charity Oracle Head and Neck Cancer UK. .
Charlotte’s was in her right breast, the hollow areas of bone around her nose.
“Symptoms vary depending on where it occurs, but common symptoms include lumps or swelling, often in the mouth, neck or face,” says Clare Schilling, consultant oral and maxillofacial surgeon specializing in head and neck cancer at the Hospitals University College London NHS. Trust.
“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 tumor.”
Other signs include pain or numbness as the ACC grows along the nerve pathways. And depending on where the tumor is growing, such as 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 grows slowly, these symptoms can develop gradually over many months.
“While ACC is rare, it is essential to recognize its unique characteristics, and what sets it apart is its tendency to invade nerve fibers, sometimes causing pain or changes in sensation in the affected area.”
This is what was causing the tingling and burning sensations that Charlotte was noticing before her diagnosis.
“In the later stages, the cancer can damage the main nerve that moves the muscles of the face, causing facial weakness that can resemble the signs of a stroke,” adds Ms. Schilling.
“Any facial lumps and new facial weakness should be taken very seriously.”
Despite being slow growing, 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 demonstrates, ACC can affect anyone, although it is most commonly diagnosed in adults between 40 and 60 years old, and women are slightly more likely to develop ACC than men, although it is not understood. because.
In fact, the causes and risk factors of ACC are still largely unknown; Unlike some cancers, it does not have strong links to 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 radiation therapy to reduce the chances of it coming back.
But it is not always possible to operate. Due to its rarity and complexity (only around 87 new cases are diagnosed each year in the UK), management of ACC requires specialist equipment and long-term follow-up.
Charlotte initially attributed it to a seasonal cold, but after three weeks of living with a subtle blockage in her right nostril, she went to the doctor.
At first, Charlotte told everyone close to her about her diagnosis, except her daughter, whom she considered 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 spoke more positively about the treatment, confirming that surgery was an option, with the goal of removing most of the cancer, and then radiation therapy could eliminate it. of the rest.
“This gave me hope,” says Charlotte.
However, in June, when Charlotte underwent surgery, surgeons discovered that the tumor had grown much larger than expected. It had spread through the nerve and reached the carotid artery, which carries blood to the brain. The operation was stopped early, as the team did not 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.
While recovering from radiotherapy, Charlotte decided to organize a charity fundraising festival during which she would sing. She had always loved singing in the kitchen at home and decided she wanted to perform, something she had never done before and which would be a big challenge, given the side effects of her treatment.
“The radiotherapy had left my mouth terribly burned and sore inside, so at first I had trouble swallowing, eating and speaking properly,” he says. “But against all odds I managed to sing several songs, including Portishead’s Roads, Frozen’s Let it Go and Chicago’s All That Jazz, to which my daughter joined in dancing.”
The event raised over £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, Charlotte received the positive news that, exceeding everyone’s expectations, the scan failed to detect any cancer. “It was a big shock,” he says. ‘They showed me a scan with a gray spot, which had previously been completely white from the cancer, and now the bone is healing. It’s the best news I can have.
“There is probably still some cancer left, but it is too small to distinguish and is probably not growing.
“I will have an MRI every three months for an indefinite period of time,” says Charlotte. ‘They wait for me to come back. ACC repeats regularly, but I don’t know when it will be.
And he adds: ‘I want everyone to listen to their bodies and trust their instincts. You really need to push for answers if you know something isn’t right.’