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Another Rare Cancer

Posts: 3
Joined: Apr 2001

Looking for anyone who has Olfactory Esthesioneuroblastoma.

Posts: 27
Joined: Apr 2002

I am the person with the nasal pharnax cancer a couple of months ago I started to have trouble with numbness at the side and tip of my nose and due to my past history I have just had a ct scan re concerns the my olfactory was now involved Please let me know about you. You can mail me at jerrikehoe@hotmail.com I have been looking for someone with this type of problem thanks orphan and I look foreward to hearing from you I am awaiting the results of my scans now.

Posts: 1
Joined: Jun 2003

I'm 25 and just dx with ENB stage A. I had the tumor removed 6-5-03 and within aweek will be startig 6 weeks of radiation. things are looking good.

Posts: 1
Joined: Aug 2003

Hello Tammy, Bob, Kathleen and others:

I was daignoised with ENB in 1981, I'm 40 now. I just have a big hole where my right maxillary sinus was. I didn't have radiation or chemo. I still have all my parts. They told me back then it was benign, but tends to re-occur and be maligant. I think I was just too new to the curve. It's been 23 years with no re-occurence, possibly. I was told in 1981 that I was No. 102, now there's a 1000 of us. They found a pea sized mass in my anterior portion of my right orbit last week. It's accessible. They think it's 60/40 an infection, that I blew out my tear duct. I've got a good team of super specialists. I'll be okay, it's not entwined with my eye. Just a biopsy to go at the end of the month. I know a doctor/director that is pushing to speed it up. He's pushed me through the system (ENT, CT scan, Opthamologist (sp?), MRI, and ENT again) in seven days. Not looking forward to it. I know what an ENT doc can do. This board is hard to read though, and I'm not helping. I really will be okay, just not looking forward to taking the lumps. Please e-mail any positive comments to mlhymas@yahoo.com. My sig other has asked that I stay off the web, cause I'll drive myself crazy. She's probably right.

Kathleen, I'm glad your doing the radiation. I've heard that's what works. I'm a lawyer and a nuclear engineer; I used to build nuclear fuel; the radiation is extremely focused, don't be scared of it, but it will make you weak. Typically it takes 2-3 weeks to regain your strength. My brother just finished a bout with it. He's got bladder cancer that's spread to his spine. But he still manages to go to work occasionally.

Best health to all,

Posts: 2
Joined: Oct 2004

On 23 July 2004 I was diagnosed with esthesioneuroblastoma at the Cleveland Clinic in Ohio. It was determined that the cancer was grade one and had not metastasized. However, a final assessment about the extent of a tumor could only be made during surgery. I did undergo endoscopic surgery on 26 August -- a 7/ 1.2 hour long ordeal. The otolaryngologist performed the procedure and a neurosurgeon was on call in case the tumor had invaded the brain -- in that case, he would have performed a craniotomy. Luckily, that was not necessary. The tumor was removed from below, inside the nose. However, because of the tumor's position and the surgeon's search for negative margins, he inevitably made a hole in the area that separates the sinuses from the brain and cerebral fluid started leaking. After he repaired the hole, they made another hole in my spinal cord and drained me every hour for seven days, hooked to a "faucet" that worked to re-establish the balance of the spinal fluid flow.

During a post-op visit with the surgeon three weeks later, the issue of a second surgery came up to eliminate scar tissue that had formed in the sinuses. I had another operation on 14 October. I am also going to undergo radiation therapy, starting on 2 November, a non-traditional approach by the name of Novalis. I would like to know if anybody out there is familiar with this kind of radiation therapy.

My symptoms went undiagnosed for 19 months until I was misdiagnosed before I sought a second opinion at the Cleveland Clinic. While I was in Italy, at the end of 2002, I started noticing breathing difficulties in my right nostril. I am an allergy sufferer, therefore I didn't think much of it. The symptoms didn't clear when I visited LA for extended periods of time neither did they improve when I moved to Oberlin, OH. In December 2003, I saw a general practitioner who told me I had a sinus infection and gave me antibiotics. The symptoms persisted. I didn't get to an ear/nose/throat specialist until June 2004 and finally got my sinuses scanned. Got a nonchalant response -- book an OR, remove that polyp from your nose, biopsy it, end of story.

I was not convinced and sought a second opinion at the Cleveland Clinic and the doctor who saw me, Pete Batra at the Head&Neck Institute, specializes in nasal tumors and endoscopic surgery. He did an endoscopy right there in the office and made his diagnosis before seeing the path report. Needless to say, I was shocked by the possibility that this growth could be malignant.

To be continued ....

Posts: 1
Joined: Feb 2017

I was diagnosed with olfactory Neroblastoma on Monday, February 14th 2017... don't know much yet. Meeting with a surgeon to discuss treatment planning Tuesday.

Not too many of us out there.

CivilMatt's picture
Posts: 4336
Joined: May 2012


Welcome to the H&N forum, sorry that you are here, but there are a some of members with Neroblastoma  type of cancer on here.  Hopefully, one of them will respond.

The thread you responded to is many, many years old and submitting to these posts often fall on deaf ears.  To get more current coverage with your questions it is often best to start a new thread and introduce yourself.

Good luck on planning.


CajunEagle's picture
Posts: 399
Joined: Oct 2009

Just wondering if these post stay on this message site for eternity ??   One would think that there should be a time lapse for when a thread would be erased. Although it is interesting for me to go back 8.....9 years ago and read some of my initial concerns and responses.  Problem is, I sure get the blues reading messages from those who have lost the fight and passed.  Like I say......Just wondering.


CivilMatt's picture
Posts: 4336
Joined: May 2012


I just try to be helpful.  Sometimes I see them out in the current threads other times they never show up again.

The H&N site was very different in the early 2000’s, a lot of esophageal cancer then.  Now they have a dedicated site.

I sing the blues with you; too many very nice people have passed.  We corresponded with them like brothers and sisters and to lose them is heart wrenching.

One interesting thing about the older posts is if you click on their name you often find they still visit the site, good for them.



Posts: 1
Joined: May 2017

I was diagnosed after polyp surgery on March 31st. My surgery is tomorrow In Atlanta. You are not alone. My surgery will be through the nose. Just taking one day at a time. 

Posts: 4
Joined: Oct 2017

How has the recovery process been for you?  If you had radiation therapy, how was that part of the experience?


Posts: 4
Joined: Oct 2017

I was diagnosed with ENB after "routine polyp surgery" in early October.  Now I am meeting with experienced surgical teams and deciding where to go for skull base surgery and then radiation.  The journey begins ...  My options include MD Anderson, UPMC and Johns Hopkins, so I feel fortunate and positive.  But I'm anxious to get the tumor removed without delay.  

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