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Olfactory Neuroblastoma

jnrandall92
Posts: 2
Joined: Feb 2013

Hi my name is Jim...and you guessed it add another member to the OBN club. I just found out Monday that I have OBN. I have stage 2 pending my PET scan tomorrow or something like that. Right now my brain is swimming and not sure where to turn or what to do. Don’t know if I should stick with my current Dr., look for a second opinion, go to MD Anderson, go here or there. I just don’t know.  Just looking for thoughts and opinions of best Docs/Medical Centers and basic HELP.

Thanks Jim

katenorwood
Posts: 1853
Joined: May 2012

Hello Jim,

Darn it I'm so sorry you have to join us here.  I have a different dx, adcc.  But I know where your mind set is right now.  Take a breathe, and re-group !  Depending on where you were dx'd, and if they are a good cancer center I'd get questions prepared for them and proceed.  They wouldn't be offended if you want a second opinion.....alot of times it's an excellant thing to do.  Depending on where your located MDA is an excellant center.  I live in Mn. but have many friends being treated there.  Hopefully other's will jump in here soon.  This group of folks are very knowledgable, and very friendly wonderful people !  Wishing you the best !    Katie 

bjohn
Posts: 17
Joined: Oct 2011

Hello Jim  My  husband has  a more advanced stage of NBL. Because this tumor is rare, treatment may vary. He had intranasal surgery for a large extensive tumor which went well followed by IMRT rads. If I had to do it again, I would have gotton a second opinion after the surgery to see if chemo is used, as it is not always the case. You can always call a center to see what they do if relocating is difficult , as the rest of life must go on. If  your doctors made the diagnosis and they have other patients with this, you must be at a larger  medical center. I have been looking at this site for app 1 1/2 yrs without seeing anything recent on ONB. Best of luck

longtermsurvivor's picture
longtermsurvivor
Posts: 1831
Joined: Mar 2010

but there are certainly others with ONB around.  Just a ways down the board is another thread with half a dozen or so people.  The post is also titled, appropriately, olfactory neuroblastoma. 

 

best

 

Pat

TN
Posts: 2
Joined: Feb 2013

Jim, my name is Tom.. I was diagnosed with a Olfactory Neuroblastoma January of 2010.  First take a breath. each case is different. The most important factor I determined is the faith in your surgeons.  I never heard of this condition until diagnosed. My tumor filled my sinus cavity and penetrated my frontal lobe.  They performed a craniofacial resection and removed the tumor.  Post radiation was administered.  I live in NYC and was referred to Mount Sinai Hospital which has a cutting edge ENT Department. There are many great doctors and hospitals, but you need to know all your options.  I first googled the cancer and got terrified, I learned the internet is NOT good for determining your suvival rate. Some doctors want to remove the tumor from the bottom using endoscopy but there is a great chance of not taking significant margins to eliminate the chance of reoccurance.  Health factors such as diabetes, weight, heart disease are all important factors. This is a highly survivable diagnosis, stay focused, keep the faith.  

jnrandall92
Posts: 2
Joined: Feb 2013

Got some great news...PET scan was clear. Only have to deal with the ONB in my RT sinus cavity. I have talked with a couple of surgeons here in Dallas both say it can be removed endoscopically. One of the Dr. did his fellowship in Cleveland and the other at the University of Pittsburg. I have been told that Pittsburg is cutting edge and innovative in this procedure.  Still looking for answers and trying to find the right surgeon to get this thing out.

TN
Posts: 2
Joined: Feb 2013

Dr. William Lawson is a pioneer in the sinus tumor field.    William.Lawson@mssm.edu  

dlygoblue's picture
dlygoblue
Posts: 28
Joined: Mar 2012

Jim, my name is David and I was disgnosed w/ ONB in 2011 and went to UTSW in Dallas for surgery, radiation and chemp. Great place, and great, experienced staff. Glad to hear your PET scan is favorable. Feel free to reach out if I can help shed light on experineces and what you might expect.

David

dlygoblue's picture
dlygoblue
Posts: 28
Joined: Mar 2012

Sorry for the typo...that's "chemo"...not chemp.

dwr9b1
Posts: 4
Joined: Aug 2012

My name is Ray. I also went to UTSW for surgery and radiation. .They are straight up and honest about what to expect  I am 6 months out and clear. It is not an easy road but you can make it. Have any of you ONB patients ever worked for a home improvement store such as Home Depot or Lowes? Trying to ascertain if wood dust or concrete dust exposure had any involvement in cancer development.

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