Radiation to sinuses only for ENB

Heather_Lynn

I was diagnosed with Olfactory Neuroblastoma 1/12/16 after surgery to remove what was thought to be a polyp obstructing my right nostril. I had a second surgery 2/4/16 to remove remaining tumor, and to get clear margins. It was Grade II, so while my neck was clear on PET scan I am starting 31 IMRT radiation treatments scheduled on 3/10/16 to just the skull base/sinus area. I'm looking for any information on side effects during and after radiation for this type of radiation/cancer.  I have seen alot of short/long term side effects for tongue and for neck areas, but not when the radiation was limited to just the sinus/nose area.  Any info is appreciated.  I am a nurse, and I have been reading everything the docs give me as well as looking online, but there is just so little information that doesn't also include radiation extending to the neck.

Thanks

SloanB

Me Too!

I am having conflicting feelings sad/happy. I too was recently diagnosed with ENB/ high grade- Kadish C- in Dec 2015- The end of January I had surgical removal, through the sinuses. Mine extends through my sinus tract, olfactory nerve, through my cribriform plate and into my frontal lobe. They got it all and my margins came back negative and my body PET scan was clear as well. I am  scheduled to start proton-radiation therapy next week. I am a RN as well... so much limited information. Not sure if I should follow through with radiation therapy as well. Glad to know someone is going through this as well and that I am not alone. 

wmc

Not as rare as they say.

First let me say welcome to both of you. Also sorry you need to be here. I believe so much of this information is old. They say there is only 1000 cases from 1924. For a condision so rare, we have about five or six,  maybe more, not counting the both of you. One is a 4 year old, and two are going through treatment now. From what I know is the survivor rate is very good, around 85%. Others will chime in and give more information. Mine was stage 3 larynx.

Bill

Heather_Lynn

SloanB said:

Me Too!

I am having conflicting feelings sad/happy. I too was recently diagnosed with ENB/ high grade- Kadish C- in Dec 2015- The end of January I had surgical removal, through the sinuses. Mine extends through my sinus tract, olfactory nerve, through my cribriform plate and into my frontal lobe. They got it all and my margins came back negative and my body PET scan was clear as well. I am  scheduled to start proton-radiation therapy next week. I am a RN as well... so much limited information. Not sure if I should follow through with radiation therapy as well. Glad to know someone is going through this as well and that I am not alone. 

Radiation

We are going through the same things-small world with this being so rare. Since I had two surgeries to remove the whole tumor, there is an increased chance for cancer cells to have gotten away from the tumor. Both rad/onc I saw said that they would recommend radiation now to help ensure everything is done to reduce the chance of it recurring. Since it was found so early, my chances are low it will recur for this type, but they still thought it was maybe a 30% chance without radiation. There just aren't studies for my exact situation, so have to base the decision on the info there is, which is typically to do radiation. Has your doc talked stats/their recommendation? Have you gotten a second opinion? I saw surgeons and rad/onc at Mayo for second opinion on both the surgery and radiation. Ultimately, you have to take their recommendations and decide what you are comfortable with. Stay in touch, and let me know what you decide and how you are doing. 

Heather_Lynn

wmc said:

Not as rare as they say.

First let me say welcome to both of you. Also sorry you need to be here. I believe so much of this information is old. They say there is only 1000 cases from 1924. For a condision so rare, we have about five or six,  maybe more, not counting the both of you. One is a 4 year old, and two are going through treatment now. From what I know is the survivor rate is very good, around 85%. Others will chime in and give more information. Mine was stage 3 larynx.

Bill

ENB

Nice to hear from you. Actually, Hudson's mom gave an update that he has a different diagnosis now, no longer ENB.

The most recent info is 1200 cases, and as it can only be diagnosed through staining on pathology, I belive the info is correct, it was from last year. Either way, some patients get radiation of their neck too for this, and since I am not I'm trying to filter out which side effects are more related (or worsened by) the additional radiation to the neck vs. just to the sinuses. Just trying to mentally prepare for what I might expect, beyond what the rad doc/nurse have said.

It is amazing to have all of the information and support available on this site, and I'm sure it will be helpful. Thanks for your response.

Barbaraek

Welcome to both of you.

i wish you both courage and tenacity as you start your fight. You are in a great spot here for support. My husband had nasopharyngeal cancer stage 4, but there were some mets to the lymph nodes so he did have the neck radiated. Sorry I can't help you with your question. His tumor was literally in the middle of his head so surgery was not an option - we had to go the chemoradiation route.

It's good you're getting a second opinion...and hopefully your hospital has a tumor board where the case is brought up and discussed amongst all the specialists who come to a consensus about the best avenue of treatment. I would imagine radiation anywhere in the nose/sinus region would result in mucositis which was the worst part of radiation for us. Not sure how it would effect salivary function - but that has also been a big problem for us and continues to be 6 months out.

Keep us posted on how you are doing. You two will be "riding the bus together " so to speak and by posting you'LOL contribute to the knowledge base here and can help others down the road.

Barbara

Kent Cass

Heather_Lynn said:

ENB

Nice to hear from you. Actually, Hudson's mom gave an update that he has a different diagnosis now, no longer ENB.

The most recent info is 1200 cases, and as it can only be diagnosed through staining on pathology, I belive the info is correct, it was from last year. Either way, some patients get radiation of their neck too for this, and since I am not I'm trying to filter out which side effects are more related (or worsened by) the additional radiation to the neck vs. just to the sinuses. Just trying to mentally prepare for what I might expect, beyond what the rad doc/nurse have said.

It is amazing to have all of the information and support available on this site, and I'm sure it will be helpful. Thanks for your response.

 

 

Goyca

ENB

Hello 

Hope u r both doing well. I am an ENB survivor. I was diagnosed in spring 2014. Please feel free to inbox me anytime.

It's not an easy ride but trust me it's doable and u can do it. Radiotherapy is very important and crucial step in ur treatment. 

Stay strong. 

 

Bsauls94518

ENB also

I too had ENB tumor and was removed during a surgery November 2015.  We had clear margins and did not require radiation. Since this is rare but It does seem to be getting more common there really isn't a defined protocol for the best practices. The surgeon that I had told me he performs 1-2 operations per year on ENB now.  I think maybe it's getting proper diagnosis now and that is why there are so many more of us. Believe in your team and get a second opinion if you are unsure.  Welcome to our small but growing club, you will make it through this terrible ordeal.