Esthesioneuroblastoma

Overview

Esthesioneuroblastoma (say: ess-THEE-zee-oh-NY-roh-blas-TOH-muh) is a rare cancer that starts high inside the nose, near the roof of the nasal cavity. It grows from special nerve cells that help you smell, which is why it is also called olfactory neuroblastoma. Because it sits close to the eyes and the base of the skull, it can cause symptoms like a blocked nose on one side, nosebleeds, or a change in your sense of smell. It is a cancer and needs care from a specialist team, but many people do well, especially when it is found and treated early.

No. It is very rare. Doctors estimate it affects roughly one person in every million each year. Many family doctors will never see a case in their whole career, which is one reason it can take a while to be recognised.

It can affect anyone at any age, but it is mostly found in adults. There are two age groups where it shows up most often: people in their 20s and 30s, and people in their 50s and 60s. It seems to affect men and women at roughly similar rates. It is very rare in children.

Symptoms

Common symptoms

• A blocked nose on one side that does not clear up
• Nosebleeds, especially from one side, that keep coming back
• A reduced or changed sense of smell
• A feeling of pressure or pain in the face or around the nose
• Headache that does not go away
• Watery eyes, bulging of one eye, or double vision
• A lump in the neck
• Sinus infections that keep returning or do not respond to treatment

Causes

Risk factors

• Age: it is more common in adults, with peaks in younger and in middle-to-older adulthood
• There are no proven lifestyle risk factors such as smoking, diet, or alcohol
• It is not usually inherited, and it is not thought to run in families in most cases
• Researchers are still studying whether anything in the environment plays a part

When to see a doctor

See a doctor urgently if:

• A nosebleed that will not stop, or that keeps returning within days
• Any sudden change in vision, or an eye that looks different from the other one
• Numbness in the face, or a lump in the neck that is new
• A one-sided blocked nose with facial pain that is getting worse

Book a routine appointment if:

• A blocked nose on one side lasting more than three to four weeks
• A change in your sense of smell that does not improve
• Repeated nosebleeds, even if they stop quickly
• Sinus symptoms that keep coming back after treatment
• Persistent headache or facial pressure with no clear cause

Diagnosis

An ear, nose and throat (ENT) specialist usually leads the assessment. They will ask about your symptoms, look inside your nose, and arrange scans. A small sample of the tumour (called a biopsy) is needed to confirm exactly what it is, because many other conditions can look similar.

Tests that may be done

• A careful examination, including looking inside the nose with a thin camera (nasal endoscopy)
• CT scan and MRI scan of the head and face to see the size and position of the tumour
• A biopsy: a small piece of tissue taken to be checked in a laboratory
• Blood tests to check your general health
• PET scan or other imaging to check whether the tumour has spread
• Eye and hearing tests if the tumour is close to the eyes or ears
• Sometimes a lumbar puncture (a sample of fluid from the lower back) as part of staging

What to expect at your appointment

You will likely have several appointments and tests over a few weeks. This waiting period can feel stressful, and it is normal to feel anxious. A team of specialists, often based at a larger hospital, will meet to discuss your results and agree on the best plan for you. It helps to bring someone with you to appointments, write down your questions, and ask for anything you do not understand to be explained again.

Treatment

Treatment is planned by a specialist team and depends on the size of the tumour, exactly where it is, whether it has spread, and your general health. The main treatments are surgery and radiotherapy, and sometimes chemotherapy. The aim is to remove or destroy the cancer while protecting nearby structures such as the eyes and brain.

Self-care at home

• Keep every follow-up appointment, even when you feel well
• Keep the inside of your nose moist, for example with saline sprays or a humidifier, as advised by your team
• Be gentle with your nose: avoid hard blowing or picking, especially after treatment
• Ask your team or pharmacist before taking any new medicine, including over-the-counter ones
• If you smoke, ask for help to stop, as this supports healing and general health
• Keep up with routine vaccinations and general health checks
• Notice and write down any new symptoms so you can raise them at your next visit

Medical treatments

Surgery is usually the main treatment and is done by a specialist surgical team. They may operate through the nostrils using a camera (endoscopic surgery) or, in some cases, through an opening near the eyes or forehead. Radiotherapy uses high-energy beams to kill cancer cells and is often given after surgery, or on its own if surgery is not suitable. Chemotherapy uses medicines that travel through the body to attack cancer cells, and it may be offered for faster-growing or more widespread tumours, sometimes alongside radiotherapy. Some people are offered newer treatments as part of clinical trials. Your team will explain the benefits and risks of each option in your situation.

When is surgery considered?

Surgery is usually the main treatment when the tumour can be safely removed. It is carefully planned using scans so the surgeon knows exactly where the tumour is. The team also works to protect the eyes, the nerves of smell, and the base of the skull. Sometimes lymph nodes in the neck are checked or removed too. If surgery would carry too much risk, radiotherapy may be used instead.

Living with this condition

Life after treatment usually includes regular check-ups, often with scans, for several years. Some people notice a changed or reduced sense of smell, a dry or crusty nose, or tiredness. These effects can improve over time, and your team can suggest practical ways to manage them. It is fine to ask for help with everyday things while you recover.

Lifestyle tips

• Build gentle activity into your day, such as short walks, and increase slowly
• Protect your nose from dry air, smoke, and dusty places where you can
• Get enough sleep and rest when your body asks for it
• Avoid smoking and ask for support to quit if needed
• Keep a simple note of symptoms and questions for your next appointment

Diet and exercise

There is no special diet that treats this cancer, but eating well helps you recover and feel stronger. Try regular meals with plenty of vegetables, fruit, and protein. If treatment affects your appetite or taste, small snacks through the day can help, and your team can refer you to a dietitian. Gentle exercise, such as walking, helps with tiredness and mood. Start slowly and check with your team before starting anything strenuous.

Mental health and emotional wellbeing

Being told you have a rare cancer can bring shock, fear, and worry, and that is a completely normal reaction. You may feel anxious before scans or find your mood dips at times. These feelings are worth talking about. If low mood, worry, or sleep problems are affecting your daily life, tell your team. If at any point you feel you cannot cope or have thoughts of harming yourself, please reach out to your local emergency services or a crisis line in your country straight away. You do not have to manage alone.

Prevention

There is no known way to prevent esthesioneuroblastoma, because its cause is not understood. The most useful step is to pay attention to symptoms that do not settle, especially a one-sided blocked nose or repeated nosebleeds, and get them checked.

Vaccines

There is no vaccine that prevents this cancer.

Screening programmes

There is no screening test for esthesioneuroblastoma. It is rare, and screening the general population would not be helpful. Instead, doctors rely on people reporting symptoms and on clinical examination.

Complications

If left untreated

• The tumour can keep growing and block the nose or sinuses, making breathing harder
• It can press on the eye or the nerves behind it, causing vision changes
• It can spread into the base of the skull and, in time, toward the brain
• It can spread to lymph nodes in the neck, or more rarely to other parts of the body
• Pressure and blockage can lead to repeated infections and pain

Long-term outlook

Esthesioneuroblastoma is serious, and it needs expert care, but the outlook for many people is encouraging. It often grows slowly, and treatment can control it, particularly when it is found before it has spread. Outcomes vary a lot from person to person depending on the stage and the exact tumour type, so your specialist team is the best source of information about your own situation. Many people live well for many years after treatment, and follow-up care is there to catch any problems early.

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