Olfactory neuroblastoma in the maxillary sinus - recent diagnosis

debbiejeanne

bany said:

hi jejrdn, i'm sorry you're
hi jejrdn, i'm sorry you're going through this. my dad is in a simialr situation as you, he had a total maxillectomy and will begin radiation soon. this information helps me alot too in trying to prepare for what he will need. good luck with the radiation

elaine

question
Elaine, please forgive my ignorance but what is a maxillectomy? I'm very sorry your dad is going thru and I will put him and his family in my prayers.
God Bless You,
debbie

chark

SIRENAF42 said:

Congrats Happe100
My ENB was in the Ethmoid sinus as well, luckily they caught it before i went into brain or eyes, but it had spread into my nasopharnyx as well. Im glad you are doing well, and your MRI was clean. Give me a warm fuzzy feeling and hope for clean checkups myself!

Sirena

Just received diagnosis
Wow. I went in for a deviated septum and sinus surgery June 15. At my post op appointment I was told I have Olfactory Neuroblastoma. I am still trying to wrap my head around this. I have my first apt with Dana Farber in Boston on July 13. The waiting is so hard. I have a strong faith in God and I know he is giving me strength. I have no idea how big or small this tumor may be. The ENT did tell me that my Olfactory Nerve is not in it's usual place. Imagine that I have a rare cancer and to boot I have a rare anantomy. How did you handle the waiting to get started. I feel like running to the cancer center and saying I am here let's do some work. I am a mother of 2 children which adds a whole new element. How do I tell them? We just lost my Mom to lung cancer in 2008. That is what they will remember. Anyone experience headaches? I am still trying to figure out the Hyam's grading system. My path report labeled it II/IV. What does that mean?

Sirenaf42, I see you are in Texas and being treated at MDA. I lived in the Dallas area, just moved to Maine in Oct 09 to be near husbands family. My Mom was treated at MDA. We spent a lot of time in Houston. She was in south Louisiana, where I spent most of my childhood. Well, just thought it funny for such a rare cancer and I say commonalities.
How are you doing now?

Christy

lawchk

chark said:

Just received diagnosis
Wow. I went in for a deviated septum and sinus surgery June 15. At my post op appointment I was told I have Olfactory Neuroblastoma. I am still trying to wrap my head around this. I have my first apt with Dana Farber in Boston on July 13. The waiting is so hard. I have a strong faith in God and I know he is giving me strength. I have no idea how big or small this tumor may be. The ENT did tell me that my Olfactory Nerve is not in it's usual place. Imagine that I have a rare cancer and to boot I have a rare anantomy. How did you handle the waiting to get started. I feel like running to the cancer center and saying I am here let's do some work. I am a mother of 2 children which adds a whole new element. How do I tell them? We just lost my Mom to lung cancer in 2008. That is what they will remember. Anyone experience headaches? I am still trying to figure out the Hyam's grading system. My path report labeled it II/IV. What does that mean?

Sirenaf42, I see you are in Texas and being treated at MDA. I lived in the Dallas area, just moved to Maine in Oct 09 to be near husbands family. My Mom was treated at MDA. We spent a lot of time in Houston. She was in south Louisiana, where I spent most of my childhood. Well, just thought it funny for such a rare cancer and I say commonalities.
How are you doing now?

Christy

ENB treatment in Dallas
Christy,

Speaking of rare cancer & commonalities, I had just moved to Dallas when I was diagnosed with ENB 5 months ago. I went in for 'polyp removal' & was told a week later I was stage II ENB (aka olfactory neuroblastoma). Stage II was because it had eroded part of my septum, but had not spread to the brain (though they still had to go into the brain to confirm). I treated at Baylor University Medical Center in Dallas, TX & can not say enough good things about them! They hired a surgeon from UPMC which is a leading center on skull base surgeries who studied these types of tumors specifically. The surgeon and a neurosurgeon removed my tumor entirely endoscopically. And trust me, it was huge! They had such precision (13 hours) & took enough margins that I didn't need radiation or chemo.

You're right, the waiting was agonizing. I did a ton of research and had at least 3 MRIs & CTs before surgery. By the time I checked in the morning of surgery, I was like "let's do this & get on with life!"

Keep your faith! Treatment for this type of tumor has come such a long way, even over the past decade. They now do a lot more endoscopic surgeries which means a much faster recovery. Due to minimal & confusing information available on ENB & expectations with surgery, I put together a website that I hope will help guide other people through this time. Hope it helps and let me know if there is anything that I can add to it!

www.ENBfacts.com

Stay strong!

Lindsey

lawchk

chark said:

Just received diagnosis
Wow. I went in for a deviated septum and sinus surgery June 15. At my post op appointment I was told I have Olfactory Neuroblastoma. I am still trying to wrap my head around this. I have my first apt with Dana Farber in Boston on July 13. The waiting is so hard. I have a strong faith in God and I know he is giving me strength. I have no idea how big or small this tumor may be. The ENT did tell me that my Olfactory Nerve is not in it's usual place. Imagine that I have a rare cancer and to boot I have a rare anantomy. How did you handle the waiting to get started. I feel like running to the cancer center and saying I am here let's do some work. I am a mother of 2 children which adds a whole new element. How do I tell them? We just lost my Mom to lung cancer in 2008. That is what they will remember. Anyone experience headaches? I am still trying to figure out the Hyam's grading system. My path report labeled it II/IV. What does that mean?

Sirenaf42, I see you are in Texas and being treated at MDA. I lived in the Dallas area, just moved to Maine in Oct 09 to be near husbands family. My Mom was treated at MDA. We spent a lot of time in Houston. She was in south Louisiana, where I spent most of my childhood. Well, just thought it funny for such a rare cancer and I say commonalities.
How are you doing now?

Christy

ENB treatment in Dallas
Christy,

Speaking of rare cancer & commonalities, I had just moved to Dallas when I was diagnosed with ENB 5 months ago. I went in for 'polyp removal' & was told a week later I was stage II ENB (aka olfactory neuroblastoma). Stage II was because it had eroded part of my septum, but had not spread to the brain (though they still had to go into the brain to confirm). I treated at Baylor University Medical Center in Dallas, TX & can not say enough good things about them! They hired a surgeon from UPMC which is a leading center on skull base surgeries who studied these types of tumors specifically. The surgeon and a neurosurgeon removed my tumor entirely endoscopically. And trust me, it was huge! They had such precision (13 hours) & took enough margins that I didn't need radiation or chemo.

You're right, the waiting was agonizing. I did a ton of research and had at least 3 MRIs & CTs before surgery. By the time I checked in the morning of surgery, I was like "let's do this & get on with life!"

Keep your faith! Treatment for this type of tumor has come such a long way, even over the past decade. They now do a lot more endoscopic surgeries which means a much faster recovery. Due to minimal & confusing information available on ENB & expectations with surgery, I put together a website that I hope will help guide other people through this time. Hope it helps and let me know if there is anything that I can add to it!

www.ENBfacts.com

Stay strong!

Lindsey

chark

lawchk said:

ENB treatment in Dallas
Christy,

Speaking of rare cancer & commonalities, I had just moved to Dallas when I was diagnosed with ENB 5 months ago. I went in for 'polyp removal' & was told a week later I was stage II ENB (aka olfactory neuroblastoma). Stage II was because it had eroded part of my septum, but had not spread to the brain (though they still had to go into the brain to confirm). I treated at Baylor University Medical Center in Dallas, TX & can not say enough good things about them! They hired a surgeon from UPMC which is a leading center on skull base surgeries who studied these types of tumors specifically. The surgeon and a neurosurgeon removed my tumor entirely endoscopically. And trust me, it was huge! They had such precision (13 hours) & took enough margins that I didn't need radiation or chemo.

You're right, the waiting was agonizing. I did a ton of research and had at least 3 MRIs & CTs before surgery. By the time I checked in the morning of surgery, I was like "let's do this & get on with life!"

Keep your faith! Treatment for this type of tumor has come such a long way, even over the past decade. They now do a lot more endoscopic surgeries which means a much faster recovery. Due to minimal & confusing information available on ENB & expectations with surgery, I put together a website that I hope will help guide other people through this time. Hope it helps and let me know if there is anything that I can add to it!

www.ENBfacts.com

Stay strong!

Lindsey

ENB Treatment
Lindsey,

Your reply brought a smile to my face. I visited your website, thank you for providing the info all in one spot. Currently, I am waiting for my surgery on Aug 20. Then the big decision is to have radiation or not, if so what type. I am near Boston and they offer Proton Beam which I hear is the best. However, there is a cancer center 10 minutes from my house with IMRT and since I have 2 kids that location sure would be most desirable. However, due to my young age of 35 radiation scares me if it is not necessary. My care team seems to be very concerned about reoccurance however. Can you tell me if it was a personal decision not to have radiation or if that is what your team recommended? I would greatly appreciate it.

And by the way CONGRATS on law school. I have a cousin currently at SMU law school. You sound like an amazing person. I hope all is still well for you.

Christy

jejrdn

chark said:

ENB Treatment
Lindsey,

Your reply brought a smile to my face. I visited your website, thank you for providing the info all in one spot. Currently, I am waiting for my surgery on Aug 20. Then the big decision is to have radiation or not, if so what type. I am near Boston and they offer Proton Beam which I hear is the best. However, there is a cancer center 10 minutes from my house with IMRT and since I have 2 kids that location sure would be most desirable. However, due to my young age of 35 radiation scares me if it is not necessary. My care team seems to be very concerned about reoccurance however. Can you tell me if it was a personal decision not to have radiation or if that is what your team recommended? I would greatly appreciate it.

And by the way CONGRATS on law school. I have a cousin currently at SMU law school. You sound like an amazing person. I hope all is still well for you.

Christy

ENB
I received radiation treatment for my ENB via Tomotherapy radiation at Uconn Medical Center in Connecticut. It was the best decision I made and the side effects were manageable. Between the surgery and the radiation I have been cancer free for about a year and a half. I have been blessed to not have lost my saliva production or sense of taste. I believe it is due to the precision accuracy of the tomotherapy machine. Although I live day to day with the reminder of my cancer because of the mouth plate I wear to replace what was removed from surgery, I am alive and you would never know by meeting me that I went through what I did. Hang in there and I hope this helps. Take care.

UKfriend

jejrdn said:

ENB
I received radiation treatment for my ENB via Tomotherapy radiation at Uconn Medical Center in Connecticut. It was the best decision I made and the side effects were manageable. Between the surgery and the radiation I have been cancer free for about a year and a half. I have been blessed to not have lost my saliva production or sense of taste. I believe it is due to the precision accuracy of the tomotherapy machine. Although I live day to day with the reminder of my cancer because of the mouth plate I wear to replace what was removed from surgery, I am alive and you would never know by meeting me that I went through what I did. Hang in there and I hope this helps. Take care.

ENB Tomotherapy radiation
Hi Jejrdn

I was interested to read that you had receive your radiation via Tomotherapy, which I believe is the same as RapidArc we have here in the UK. I begin my treatment tomorrow and have been told that I am the first ENB patient here in Scotland to receive this via RapidArc. I have had my mask made and have been told to expect to loose my hair and suffer quite severe side effects so it is great to hear that your side effects have not been too bad - it gives me some hope for the next 7 weeks of treatment. I hope you are still recovering well. Fiona

hai5965

SIRENAF42 said:

Esthesionueroblastoma
I was diagnosed with EST as well, 2 surgeries and 6 weeks of radiation. You are the first person I found with this same type rare cancer... Would you mind conversing Im still in my recovery phase and would love to hear your story. Email me here or at sirenaf40@aol.com.

ESTHESIONEUROBLASTOMA
I was diagnosed with this in 9/06, and with a craniotomy and tumor resection i was gret up until this past aug when a tumor was found on my brain, took a biopsy with another craniotomy and it was back the neuroblastoma was on my brain. now i cant find any doctors who have treated this before and im running out of time to treat this. i can do chemo they say then it will just come back again. any ideas on doctors?

SIRENAF42

hai5965 said:

ESTHESIONEUROBLASTOMA
I was diagnosed with this in 9/06, and with a craniotomy and tumor resection i was gret up until this past aug when a tumor was found on my brain, took a biopsy with another craniotomy and it was back the neuroblastoma was on my brain. now i cant find any doctors who have treated this before and im running out of time to treat this. i can do chemo they say then it will just come back again. any ideas on doctors?

Specialty Hospital
You should get referred to MD ANderson or I belive John Hopskins (I think thats the name), as they both specialize in rare cancers.

sunney

hai5965 said:

ESTHESIONEUROBLASTOMA
I was diagnosed with this in 9/06, and with a craniotomy and tumor resection i was gret up until this past aug when a tumor was found on my brain, took a biopsy with another craniotomy and it was back the neuroblastoma was on my brain. now i cant find any doctors who have treated this before and im running out of time to treat this. i can do chemo they say then it will just come back again. any ideas on doctors?

Try the Mayo Clinic in
Try the Mayo Clinic in Rochester. They are amazing and the best hospital in the world. They will take any patient. My husband is being seen there now Esthesioneuro. It is also a research hospital so they may want to try something new. Hope this helps and I will I could do more.

Tracy

Homebythewater

Elliot16 said:

Radiation
I was diagnosed with an esthesioneuroblastoma and had a craniofacial resection on 11/22/02. That was followed by 8 weeks of radiation. The radiation itself was not a problem although my taste buds were obviuosly affected. They are better now but not perfect. I found any tomato based products, due to its acidity were the most tasteful.I wish you all the luck in the world.

Olfactory neuroblastoma

just wondering, since your post as in 2009, how are you doing now?  husband juse had caraniotomy 3weeks ago, radiation coming up in a couple weeks.

KTeacher

Homebythewater said:

Olfactory neuroblastoma

just wondering, since your post as in 2009, how are you doing now?  husband juse had caraniotomy 3weeks ago, radiation coming up in a couple weeks.

Welcome

Welcome to CSN.  A great group of people that wish we didn't have to be here.  You will get support and encouragement.  This is an old post and I have not seen any of the people post, except for Debbie.  You might start a new topic and I am sure that you will get more responses.