Olfactory Neuroblastoma

Redbow said:

Same boat as you...

Hello DougNTexas,

I, too, was just recently diagnosed w/ Stage A, lowgrade Esthesioneuroblastoma.  I found out in Nov. when I had surgery to remove a sinus polyp...After surgery, I had a follow up w/ a radiation oncologist who wanted to treat me w/ a 6 weeks course of radiation but my PETScan came up clean for the surgical site and w/ no metasteses.  That was in Dec.  So, for now, I am in a holding pattern (trying to get my insurance to approve a trip to M.D. Anderson in Houston, where they have experience w/ this rare cancer) but am hitting a brick wall.  From what I understand, so far, if you are in the earlier stages of this cancer, you will have an eaiser treatment...maybe only surgery...but, this cancer has a high rate of return, so usually they recommend surgery and radiation.  Chemo is usually reserved for later staged cancer that has envaded areas that are hard to reach w/ surgery.  I have worked in dusty enviornments for many years...I have horses here in West Texas and have worked in woodcrafters enviornments (although not for extended periods of time).  This cancer requires long term follow up.

Hope all is going well for you...

SusanTX

susan, this thread is old so u may want to start a new one.  some may overlook it since it's so old. 

God bless,

debbiejeanne

Please, if anyone sees this, I've opened a new thread about Esthesioneuroblastoma/Olfactory Neuroblastoma. Please check it out. I a in dire need of help and advice. Thnk you, and best to you all.

Sierra,

Welcome to the H&N forum, sorry about Mom, but chances are they will take care of it.  Treatment is tough, but very doable (we all did it),

This is an older thread and some of the members (above) do not come on as often.  To get a wider audience and some good response your best bet is to start a new thread and introduce yourself.

You also might look over the superthread for good info.

Matt

Rochester1950 said:

New Member

Hi - just found this blog.  I was diagnosed last December after a routine polyp surgery.  Have gone through 5 weeks of radiation and now have monthly endoscopies with either my oncologist or ENT.  Have lost sense of smell/taste and wondering if anyone has experienced the same and regained the senses.  If so, how long did it take?  Just looking for some encouragement.  Thank you.  Sheila

Shelia,

Welcome to the H&N forum, I am glad you are on the mend.

As I mentioned above, this is an older thread and may not generate any response.  Your best bet is to start a new thread.

Matt

Im newly diagnosed with olfactory neuroblastoma and am considering surgery only.  Any experience with this?  im not interested in the radiation side effects.  also can someone instruct me on how to open a "new thread"  thanks,  i appreciate any comments/thoughts    cindy w

ckwhitehead said:

new olfactory neuroblasoma diagnosis

Im newly diagnosed with olfactory neuroblastoma and am considering surgery only.  Any experience with this?  im not interested in the radiation side effects.  also can someone instruct me on how to open a "new thread"  thanks,  i appreciate any comments/thoughts    cindy w

I suggest you contact MD ANderson in Houston.

I recommend Dr Ehab Hanna and Dr Raza.    I had ENB Kadish C, Stage 2-3 Hyman Scale.   I had a fist sized tumor between my eyes that finally blocked my right nasal cavity before I went to an ENT to get it diagnosed after a CT scan.

I live in Oregon and was diagnosed on Jan 6 2016.   Had surgery on March 3 this year and I recommend you get radiation to the site of the tumor after surgery.   In my case they recommended also preventative radiation of the upper half of my neck.     It was nothing as bad as they say in the training class which basically gives you all the worst case scenarios.  I did lose 30 pounds but needed to anyway...I am 185 punds now.   I started 30 days of radiation in April and stayed in Houston for that.    Got home June 1 started to work full time a week after that.    No doubt it kicks your butt for awhile with no energy and some dry mouth and no taste that they say returns but has not yet.  From the radiation they saved hitting my two large saliva glands by my cheeks and I lost function of the two small ones located under my chin.    I have quite a regiment of mouth cleaning and flouride trays and nose rinsing and cleanout of crusting in the nose, but I like the cancer free result.     All of this gets better and more normal as time goes on.

I fly back every 3 months since then and get MRI scanned.    Have also had 3 PET scans this year making sure it has not left the initial site.   Presently cancer free as of just before Thanksgiving Day when we got back from Houston.    So dont beleive all you read about life expectancy...etc.    Everyones genes are different and procedures are improving and radiation targeting is much much better than even just a few eyars ago.    Alot of those articles you read takes years of study and added lengthy approval for reading.     Its old news by then even it it says published in 2015.

My case was a major surgery.    They did it all through my nose endoscopically.    They did cut me ear to ear over my head to pull down the skin and get the paracranial flap and some layers of muscle called Fascia Latta from my leg that replaced a 2x2 piece of my skull base, the cribiform plate I think they call it.  They also  removed all my ethmoid sinus and most of my cartilage inside by nose but saved the nose shape and I have no facial scaring and the head scar is in my hairline and you cannot see it either.    They also removed bone from both my eyes....the sides on either side of nsoe and they fileld it back in with the leg muscle I mentioned.    I am now bionic!        Not worth $6 million yet....but maybe some day.

They removed both my olfactory bulbs and the tumor had invaded the cranial cavity but not brain tissue, it has half way through an area of my Dura which is the skin that wraps the brain.

I had a small complication with a small cranial fluid leak the day I was to be released on my last check that kept me in the hospital for 7 extra days but it healed itself without further surgery.   They proabably removed the lumbar drain too early before they found the leak on my last check.   The had to put it back in.....now that sucked and was painful!    Get that done while they put you under!     But it was far better than another surgery.   The lumbar drain keeps your cranial fluid pressure down in the brain so the paracranial flap they install to replace the skull base piece has time to set and seal since it has to be air and water tight.   It replaces what used to be bone between your sinus and brain.     The tumor was close to my right optic nerve and my eye sight is good and I see the eye doctor every few months to compare against a baseline.    The radiation hit my brain frontal lobe pretty good and also near my right eye.    But no major long term impact is expected....maybe some short term executive function and short term memory, but has not been bad at all.    Yes....all radiation increases the chance of other cancers starting but dont forget.......you already have cancer and you must do everything possible to kill it.    Don't mess around and take chances.   If ENB gets south of the neck its a more complex problem.   But I beleive in prayer and I had alot of that going on with my family.    Trust in God as He is the one in charge no matter what decisions we make.      Have faith, but I know its scary as heck.      Especially before surgery.     You will be fine but you will have a year of crap for sure.   No way around that now.   It does get better ever day!    Let me know if you need more information or contact information.

Take care and God bless.    You are going to survive this!   Dont give up!

Mark

MGE 1111 said:

Im sorry about your diagnosis......but You Can WIN

I suggest you contact MD ANderson in Houston.

I recommend Dr Ehab Hanna and Dr Raza.    I had ENB Kadish C, Stage 2-3 Hyman Scale.   I had a fist sized tumor between my eyes that finally blocked my right nasal cavity before I went to an ENT to get it diagnosed after a CT scan.

I live in Oregon and was diagnosed on Jan 6 2016.   Had surgery on March 3 this year and I recommend you get radiation to the site of the tumor after surgery.   In my case they recommended also preventative radiation of the upper half of my neck.     It was nothing as bad as they say in the training class which basically gives you all the worst case scenarios.  I did lose 30 pounds but needed to anyway...I am 185 punds now.   I started 30 days of radiation in April and stayed in Houston for that.    Got home June 1 started to work full time a week after that.    No doubt it kicks your butt for awhile with no energy and some dry mouth and no taste that they say returns but has not yet.  From the radiation they saved hitting my two large saliva glands by my cheeks and I lost function of the two small ones located under my chin.    I have quite a regiment of mouth cleaning and flouride trays and nose rinsing and cleanout of crusting in the nose, but I like the cancer free result.     All of this gets better and more normal as time goes on.

I fly back every 3 months since then and get MRI scanned.    Have also had 3 PET scans this year making sure it has not left the initial site.   Presently cancer free as of just before Thanksgiving Day when we got back from Houston.    So dont beleive all you read about life expectancy...etc.    Everyones genes are different and procedures are improving and radiation targeting is much much better than even just a few eyars ago.    Alot of those articles you read takes years of study and added lengthy approval for reading.     Its old news by then even it it says published in 2015.

My case was a major surgery.    They did it all through my nose endoscopically.    They did cut me ear to ear over my head to pull down the skin and get the paracranial flap and some layers of muscle called Fascia Latta from my leg that replaced a 2x2 piece of my skull base, the cribiform plate I think they call it.  They also  removed all my ethmoid sinus and most of my cartilage inside by nose but saved the nose shape and I have no facial scaring and the head scar is in my hairline and you cannot see it either.    They also removed bone from both my eyes....the sides on either side of nsoe and they fileld it back in with the leg muscle I mentioned.    I am now bionic!        Not worth $6 million yet....but maybe some day.

They removed both my olfactory bulbs and the tumor had invaded the cranial cavity but not brain tissue, it has half way through an area of my Dura which is the skin that wraps the brain.

I had a small complication with a small cranial fluid leak the day I was to be released on my last check that kept me in the hospital for 7 extra days but it healed itself without further surgery.   They proabably removed the lumbar drain too early before they found the leak on my last check.   The had to put it back in.....now that sucked and was painful!    Get that done while they put you under!     But it was far better than another surgery.   The lumbar drain keeps your cranial fluid pressure down in the brain so the paracranial flap they install to replace the skull base piece has time to set and seal since it has to be air and water tight.   It replaces what used to be bone between your sinus and brain.     The tumor was close to my right optic nerve and my eye sight is good and I see the eye doctor every few months to compare against a baseline.    The radiation hit my brain frontal lobe pretty good and also near my right eye.    But no major long term impact is expected....maybe some short term executive function and short term memory, but has not been bad at all.    Yes....all radiation increases the chance of other cancers starting but dont forget.......you already have cancer and you must do everything possible to kill it.    Don't mess around and take chances.   If ENB gets south of the neck its a more complex problem.   But I beleive in prayer and I had alot of that going on with my family.    Trust in God as He is the one in charge no matter what decisions we make.      Have faith, but I know its scary as heck.      Especially before surgery.     You will be fine but you will have a year of crap for sure.   No way around that now.   It does get better ever day!    Let me know if you need more information or contact information.

Take care and God bless.    You are going to survive this!   Dont give up!

Mark

 

 

 

 

 

 

    

 

 

  

 

 

I would like to know if you experienced personalit's changes after surgery and for how long.

and is any activity or therapy that can recommend to have a fast recovery of the

frontal lobe abilities.

Sandy m said:

olfactory neroblastoma

Hi, is anyone there I have Olfactory Neroblastoma Cancer, is anyone on this site

 

Hello! I was diagnosed with olfactory neuroblastoma (though they called it esthisio neuroblastoma) in February of this year. Finished treatment in august. Had surgery to remove tumor and radiation and chemo (cisplatin) mine was stage 4. 

Hello,

Just recently diagnosed with olfactory neuroblastoma about 4 days ago.  It started with a simple Nasal Polyps removal through nasal endoscopy.  I went back for the follow up and come to find out that they took out a 5cm tumor, calls it olfactory neuroblastoma...  Currently waiting for an MRI within the next two weeks.  They talked about possible Radiation Therapy, but don't really know too much at this time.  I'm 34, currently in the military for the last 12 years.. didn't really work specifically with any hazardouse chemicals, dust, etc; but know that I was exposed.  Will post for future updates for anyone in the future or currently looking at this thread.  Thank you all for sharing your story.

Angelo2018 said:

Olfactory Neuroblastoma

Hello,

Just recently diagnosed with olfactory neuroblastoma about 4 days ago.  It started with a simple Nasal Polyps removal through nasal endoscopy.  I went back for the follow up and come to find out that they took out a 5cm tumor, calls it olfactory neuroblastoma...  Currently waiting for an MRI within the next two weeks.  They talked about possible Radiation Therapy, but don't really know too much at this time.  I'm 34, currently in the military for the last 12 years.. didn't really work specifically with any hazardouse chemicals, dust, etc; but know that I was exposed.  Will post for future updates for anyone in the future or currently looking at this thread.  Thank you all for sharing your story.

Hi, I just wanted to let you know that I was also diagnosed with this in January of this year after having surgery to remove a tumor from my sinuses.  The pathology report showed it was Kadish B olfactory neuro blastoma.  I am 1 week away from completing a 6 week term of radiation.  I'd like to hear more about your experience, and would be happy to share more of mine.  I work in the television and film industry and have worked as a costumer for over 27 years.  I anticipate I got this from being around sets under construction, or possibly dry cleaning or dust from the costume houses I work in regularly.  My doctors feel that my prognosis is very good as my surgery was completed with negative margins.  I'm very concerned about the long term effects of radiation treatment and would like to hear from more people who have experience with this. Thanks for any information you'd like to share, and I'm happy to answer any questions about my experience you may have.  I'm a 51 year old woman, BTW.  Thanks for your post.