What Is an Olfactory Neuroblastoma?

Olfactory neuroblastoma may cause loss of smell.
Some olfactory neuroblastomas will cause puffiness and dark circles under the eyes.
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  • Written By: Niki Foster
  • Edited By: Andrew Jones
  • Last Modified Date: 10 November 2014
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Olfactory neuroblastoma, also called esthesioneuroblastoma, is a very malignant, or cancerous, tumor believed to originate in the olfactory cells. The olfactory cells, located in the upper rear of the inside of the nose, are responsible for the sense of smell. This condition often responds well to radiation therapy, but the tumor has a high tendency to recur after excision.

Olfactory neuroblastoma is a relatively rare cancer. The cancer was first characterized in 1924, and there have been less than 1,000 recorded cases since then. It can cause loss of smell, taste, and vision, as well as facial disfigurement in advanced cases.

Despite its name, olfactory neuroblastoma is considered distinct from other neuroblastomas, because it does not originate in the sympathetic nervous system (SNS). The condition is controversial, because it is so rare that it cannot be easily studied and characterized. Some cases of esthesioneuroblastoma are extremely aggressive, resulting in death within a few months, while others grow slowly. Some patients have survived for 20 years with an olfactory neuroblastoma. No trends have been discovered regarding the tendency of esthesioneuroblastoma to affect individuals of a certain race, sex, or age, and the tumor does not appear to run in families.

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As with other nasal cancers, the symptoms of olfactory neuroblastoma fall into six categories: nasal, facial, oral, ophthalmic, neurological, and cervical. Nasal symptoms include nasal obstruction, discharge, and polyps. Facial symptoms include swelling, pain, and lack of sensation. Oral symptoms include loose teeth, and the loss of teeth, as well as ulcers in the mouth. Ophthalmic symptoms can present as loss of vision, while cervical problems present as a mass in the neck. Nasal symptoms are the most common, and usually the first to appear.

Olfactory neuroblastoma is diagnosed through the observation of symptoms, followed by biopsy or imaging, such as a computed tomography (CT) scan, or magnetic resonance imaging (MRI). It is usually treated with surgery, followed by radiation. Chemotherapy is not common in the treatment of esthesioneuroblastoma.

The surgical treatment of esthesioneuroblastoma, like all surgeries, has risks. These include infection, meningitis, pneumocephalus, and blindness. There is a 10-15% change of developing one of these complications, and patients undergoing surgery for esthesioneuroblastoma have a five-year survival rate of 50-80%. The patient should be able to leave the hospital the day after surgery, and does not require extensive aftercare, but a lengthy follow-up is required due to the tumor's tendency to recur, sometimes years after surgery.

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anon326278
Post 7

I had been suffering with one sided congestion and a slight loss of smell for about 11 months, which were my only symptom. I was diagnosed with olfactory neuroblastoma in April 2011, after having a sinus surgery which was thought to be polyps in my sinuses. I then had a craniotomy in May 2011 with no complications. I also had to have two lymph nodes in my neck removed as a precaution as they "lit up" on the MRI, but they were not cancerous.

One month after surgery, I started radiation treatments. I had to have 32 treatments. I have follow up checks with the doctors every six months. To date I am still cancer free.

anon285251
Post 6

My name is Tia. I am just beginning my journey with cancer as I was diagnosed July 2012 with the malignant tumor called an Esthesioneuroblastoma.

I am seeing specialists at UAMS Little Rock AR Cancer Institute and Neuroscience Institute.

I was told I will have a craniofacial resection and reconstruction of the bones eaten by the tumor. Then I will begin radiation/chemo therapy -- to be determined soon, I guess.

I am in a lot of pain: facial, nasal, breathing and the swelling and disfigurement of my forehead/eye and nose are causing problems with sight and even sound. I am now avoiding phone chats because it hurts my headache and vibrations of sounds are like lightning to my head pain.

I would not wish this on anyone but I will be happy to post updates as it looks like I will have a long journey, so hopefully I will remember posting this and return every few weeks with updates. Until then, I hope you cherish every day and talk about love out loud. It might make you smile!

anon259711
Post 5

In February 2005, I had surgery to remove a tumor from the sinus area, and scrape the olfactory nerves. I had 31 radiation treatments and six chemotherapy treatments.

In July of 2006, I went blind in eye on the opposite side of my face. Now for the past year and a half I have had severe swelling and pain in my toes. It lasted about eight months in my left foot.

After five months with no pain, it started up in my right foot. It's been moving around from my toes to my heel and ankle, and does not appear to be healing.

The doctors never could figure out what it was in the left foot, and I have insurance now, which means we don't know what's in the right foot. Any ideas?

anon240453
Post 4

I was diagnosed five years ago. I also had nose bleeds and could not breathe from one of my nostrils I was lucky that they were able to remove the mass via my nostrils but I was told that this is a 20 year remission period.

anon237514
Post 3

I was diagnosed with olfactory neuroblastoma 11 years ago. The tumor was accessed via the side of my nose and through the front of my skull. I had it removed and contracted golden staph so I had two further operations to treat the infection and insert a metal plate into my skull. I have lost my sense of smell but lead an otherwise normal life.

anon192310
Post 2

I had one and it was removed via surgery. I had symtoms for about six years like nosebleeds and severe breathing difficulties.

When i finally got it checked out the tumor was visible up my left nostril and was starting to deviate my septum. It took the docs a while to diagnose me because of the rarity. Just finished seven weeks of radiation therapy. Haven't seen any signs of recovery yet, but hopefully I will soon.

Lindsay21
Post 1

Gosh, I can't even imagine having this or going through a treatment for this. With swelling in the face, nasal passage, throat, neck, or mouth, even a common cold seems like it would be hard to manage for people with an olfactory neuroblastoma.

Has anybody reading this actually had an olfactory neuroblastoma? If so, you have my sympathy. What was it like?

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