Understanding Head & Neck Cancers
- Claire Barbery, 51, dismissed her snoring and blockage in her nose as from getting testing for Covid, but it turned out to be a rare type of head and neck cancer called olfactory neuroblastoma.
- Barbery underwent surgery, six weeks of chemotherapy and radiotherapy to treat the disease, and now hopes her story will inspire others to be aware of symptoms and get checked.
- Johns Hopkins Medicine describes olfactory neuroblastoma, which is also known as esthesioneuroblastoma, as when a cancer specifically begins in the nerves that affect your sense of smell. This rare type of nasal and sinus cancer often occurs on the upper part of the nasal cavity, and involves the cribriform plate, a bone located in between the eyes and deep in the skull.
- Snoring is usually associated with sleep apnea. So if you snore at night, you may want to speak with your doctor to determine whether or not you have sleep apnea. Sleep apnea a sleep disorder during which breathing stops and starts multiple times. The American Medical Association says nearly 30 million people in the U.S. have sleep apnea. However, only 6 million people are diagnosed with sleep apnea.
- Advocating for your health is extremely important. You never know when speaking up about issues with your body can make a world of difference for health outcomes. One of our experts says there should be a plan for what the doctor will do for you after you leave every appointment.
She ultimately got checked in January 2023, after trying to alleviate her symptoms with a steroid spray. However, when the spray was found ineffective, Barbery visited an Ear, Nose, and Throat specialist who discovered she had a 5cm tumor through scans and a biopsy.
Read MoreShe warned, “If you know your body, then you’ve got to push. If there’s something wrong, don’t ignore it.”
Johns Hopkins Medicine describes olfactory neuroblastoma, which is also known as esthesioneuroblastoma, as when a cancer specifically begins in the nerves that affect your sense of smell.
This rare type of nasal and sinus cancer often occurs on the upper part of the nasal cavity, and involves the cribriform plate, a bone located in between the eyes and deep in the skull.

Barberry underwent surgery in January 2024, a procedure which was shared on a documentary called “Surgeons: A Matter of Life or Death.”
Her consultant surgeon Shahz Ahmed told SWNS, “Untreated, it could have metastasized and spread into the neck and the rest of the body. It had already gone through the skull base into the base of the brain and if left, it would have become harder and harder to treat.”
Although Barberry has been forever left without a sense of smell, her surgeon said, “Thankfully, the surgery was a huge success and Claire suffered no complications.”
Understanding Olfactory Neuroblastoma: A Type of Head & Neck Cancer
Olfactory neuroblastoma, a type of head and neck cancer which is also called esthesioneuroblastoma often shows up with various signs and symptoms, including:
- Pain surrounding the eyes
- Stuffiness or congestion that doesn’t get better
- Blockage of the nose
- Postnasal drip
- Watery eyes
- Nosebleeds
- Loose teeth
- Ear pain or pressure
- Enlarged lymph nodes in the neck
As for how this disease is diagnosed, Johns Hopkins explains that a range of imaging methods can be used to assess the nasal cavity, such as X-rays, CT scans, and MRI.
Expert Resources On Head & Neck Cancers
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To gather more detailed information, a doctor may also perform a biopsy. This involves collecting a small sample of tissue and analyzing it under a microscope to identify the type of cancer.
Surgery is usually the first step in treating nasal cavity cancers like olfactory neuroblastoma. The goal is often to remove not only the tumor but also a margin of surrounding tissue to reduce the risk of any cancer cells being left behind.
Two commonly performed surgical procedures are wide local excision and medial maxillectomy. These are major operations that may require facial reconstruction afterward but generally provide the best prospects for long-term survival. In certain cases, a less invasive approach—such as endoscopic surgery using a thin, lighted instrument—may be an option.
John Hopkins explains further, “Radiation therapy is also usually part of the treatment plan for olfactory neuroblastoma. This may be the primary treatment or it might be used after surgery to reduce the chances of the cancer returning. In some cases, chemotherapy may also be used to treat olfactory neuroblastoma.
“You may need a combination of treatments involving radiation and chemotherapy after surgery to give you the best chance of survival.”
Sleep Apnea & Cancer
Snoring is usually associated with sleep apnea. So if you snore at night, you may want to speak with your doctor to determine whether or not you have sleep apnea.
Sleep apnea a sleep disorder during which breathing stops and starts multiple times. The American Medical Association says nearly 30 million people in the U.S. have sleep apnea. However, only 6 million people are diagnosed with sleep apnea.
Obstructive sleep apnea is the most common type of sleep apnea. It’s when your upper airway gets blocked many times while you sleep, reducing or completely stopping airflow.
Sleep apnea can cause myriad problems apart from just tiredness from interrupted sleep. It can also lead to heart problems and as a recent study shows it can cause elevated cancer risk.
In an earlier interview with SurvivorNet, Dr. Amanda Phipps, an epidemiologist and researcher at Fred Hutchinson Cancer Research Center in Seattle, spoke about the links between sleep apnea and cancer.
“This is a cross-sectional analysis,” she explained of a 2019 study showing a similar correlation between apnea and cancer. “So it shows just one snapshot of each participant. So it’s really hard to work out what’s the chicken and what’s the egg, whether the apnea or the cancer came first.”
“Not all cancers are created equally,” Dr. Phipps adds. “The association between [sleep apnea] and cancer may well be different depending on the type of cancer.”
Symptoms of sleep apnea include:
- Loud snoring
- Periods during which you stop breathing during your sleep
- Gasping for air during sleep
- Waking up with a dry mouth
- Waking up with a headache
- Problems with staying asleep
- Excessive sleepiness during the day
- Trouble paying attention during the day
- Irritability
A researcher who presented the sleep apnea study, Dr. Andreas Palm, told Eureka News, “It is known already that patients with obstructive sleep apnea have an increased risk of cancer, but it has not been clear whether or not this is due to the OSA itself or to related risk factors for cancer, such as obesity, cardiometabolic disease and lifestyle factors.
Dr. Palm continues, “Our findings show that oxygen deprivation due to OSA is independently associated with cancer. We found that patients with cancer had slightly more severe [sleep apnea].”
Patients that Dr. Palm and his team looked at included people diagnosed with lung cancer, prostate cancer, and melanoma. “The findings in this study highlight the need to consider untreated sleep apnea as a risk factor for cancer and for doctors to be aware of the possibility of cancer,” says Dr. Palm.
An earlier study pointed to the same correlation. In 2019, a study of more than 19,000 people from the European Sleep Apnea Database (ESADA) suggested that women with obstructive sleep apnea (OSA) are more likely to be diagnosed with cancer than men with the condition.
Researchers looked at data from 19,556 people included in the database, an international, multicenter study, and found that among the ESDA participants, 388 people (2 percent) had been diagnosed with a serious cancer. this included 160 women and 228 men, which is 2 percent of all women and 1.7 percent of all men in the ESADA group.
The study did not look at a specific kind of cancer.
Pushing For A Correct Diagnosis
When it comes to your health, be a little pushy. You know your body better than anyone else. When you see a doctor for a problem, don’t hesitate to make sure that your question is fully answered and that you are comfortable with the plan moving forward. From a doctor’s perspective, every problem should have a diagnosis, a treatment, a plan for follow-up, and a plan for what happens next if the treatment doesn’t work.
As a patient, if you don’t feel like each of these four things has been accomplished, just ask! Even if it requires multiple visits or seeing additional providers for a second opinion, always be your own advocate.
The Importance of Being Your Own Advocate
Dr. Zuri Murrell, director of the Cedars-Sinai Colorectal Cancer Center, previously told SurvivorNet that healthcare guidelines are meant to do the right thing for the largest number of people while using the fewest resources.
“The truth is you have to be in tune with your body, and you realize that you are not the statistic,” he said.
Dr. Murrell told SurvivorNet that not every patient will “fit into the mold,” so it’s important to educate yourself and be your own health care advocate.
“Every appointment you leave as a patient, there should be a plan for what the doc is going to do for you, and if that doesn’t work, what the next plan is,” Dr. Murrell advised. “And I think that that’s totally fair. And me as a health professional that’s what I do for all of my patients.”
Contributing: SurvivorNet Staff
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