olfactory neuroblastoma diagnosis

San Francisco

I Am  totally new to chat rooms and discussion boards so I hope I do this right. I was just diagnosed with olfactory neuroblastoma stage A grade 2 - 3. I had a polyp removed on December 29th and the biopsy showed a malignant tumor instead.my doctor is sending me to San Francisco (ucsf) to be treated. I'm actually really excited to go there because I think treatment in VEGAS would be very blah.  my appointment in San Francisco is in 2 days Thursday January 29th. It is just a consultation and I have my list of questions ready. But as someone who has researched the Internet to death to learn more about this I wanted to at least add my experiences for those who are still in the same stage or getting ready to enter the stage that I am in.

 

this cancer is the only one that uses letters to stage itself and numbers to describe how ugly the tumor is. Stage a is compared to stage 1, grade 2 - 3 means mid grade. My doctor says it basically describes how ugly the tumor is. Both the stage and the grade make a difference in prognosis.

 

the surgery to remove the polyp was an in and out procedure I was very light headed for 4 or 5 days. Normally I recover from surgery,  like hysterectomy or appendectomy, very quickly but this is weird. When they mess with your head it throws a few more things off so if that happens to you don't worry, that's normal. It may bleed off and on for several days again, don't worry, it's probably, like it was for me, blood clots back up in the sinuses that would break and leak and a break and leak. You're most likely not just bleeding from the surgery it is just a blood clot. Also I had a lot of sinus pressure which makes sense since that's where the surgery was.they do put splints in your sinuses which you won't be able to see but they do cause some of that pressure. Once they remove those I felt like a whole new person.  all together though it's really not a bad recovery.

 

they did find a small leak in the cribriform plate. That is the plate between the brain and the sinuses. It was leaking cerebral fluid which is not a good thing but it was small and they repaired the leak.because there was that small Leak I want to make sure they get those Negative margins through surgery because I don't know if the tumor caused the leak by applying pressure on the cribriform plate and wearing it thin or because there are cancer cells in it

 

my research has basically told me that surgery and radiation are the golden treatment. Since I've already had the tumor removed I don't know if I still need surgery, however I think since they did not know it was a tumor when they removed it, surgery would still be likely so they can remove more areas around where the tumor was. That is called getting negative margins. Margins that don't have cancer cells in them.

 

I hope to get a PET scan before surgery just to be positive there is no extra metastasis.one thing I am unclear on is radiation involvement. How many days, how many weeks, can I do the radiation in Las Vegas where I live, or do I need to go to San Francisco every time? Personally I don't want just anybody radiating my head so I will be making sure I ask everything I need to know in order to do what's best health wise and not go broke.

 

 

 

also I have learned that when they do the surgery they actually do a quick diagnosis, I'm not sure if thats what its called, but basically they are able to test the sells right then while you're in surgery to know if they have reached negative margins or not so you shouldn't have to worry about them doing surgery finding out they didn't get everything and then having to go back for surgery. I think that's fantastic news and I'm grateful that modern medicine has come so far.

 

in a separate post someone asked how our families are doing and how they have reacted. My family is just fine and going on as usual, as mi. Your family will react however you react. This may be something that needs to get fixed and something we will have to keep an eye on for the rest of our lives but we can fix it. Prognosis is high and until someone tells me that there's nothing they can do there's no reason to think that it won't turn out fabulous.everything I will have to experience might not be so fun, but it will end and and I will be fine.

San Francisco here I come!

wmc

Welcome to the H&N Group

Let me say Welcome to the H&N CSN. Also sorry you need to be here, but you did find the best on there is. Grade "A" is a very good thing in your favor. As for the Stage 2~3 that is not bad and can change once they are in there. Mine was SSC T4; N2;M0 right before surgery and when is was over it was T3; N0;M0 so it was less and better. I think someone on here had the olfactory neuroblastoma. I was SSC of the larynx so I don't have much info on yours. I was surgery only, removed the tumor, larynx and 86 lymph glands. I never had to have radiation or chemo. 

UCSF is rated quite high in cancer Nationally. It is a bumpy road you will go down, but you can do it and come out just fine. Radiation effect everyone a little differant, and it can have some side effects. Just a ruff gues is 30 ~35 Tx so around 6 to 7 weeks. Yes they can set it up to have it done local. I will have to let the others that had radiation explain it, and answer questions. Just take one day at a time, and drink lots of water to stay hydrated.

Best of luck and will add you to my prayer list;

Bill

phrannie51

Welcom SF....

We've had a few others here with the same diagnosis as you.....you seem to be upbeat and getting informed quickly...GOOD!!  I think you might want to check out the area around the hospital in SF for a place to stay while you get radiaiton....I don't blame you one bit for being picky about who does it, and what they use to do it.....there may be housing just for cancer patients (there is at many other big centers in the US). 

This forum/board is a great one for information.....everybody here has either gone through treatment, is in treatment or has a loved one going through it.....lots of great tips and tricks to make this tough journey not quite so hard.

p

Hondo

cribriform plate

You found the right place for help and the best advice on C just sad we meet because of C. Looks like you had quite a journey there and having a leak in the cribriform plate like you said is not good but glad your doctors were able to get it closed back up. Please keep us up dated with you treatment and welcome to the family

Hondo

debbiejeanne

hi sf and welcome to the

hi sf and welcome to the family.  this is a great family and you will find lots of information and encouragement here.  i will be praying for tx to go well with very few bumps in the road.  we will be here to cheer you on. 

God bless you,

dj

Goyca

Hello SF, i had olfactory neuroblastoma too

Hello SF,

sorry you are here. But I'm glad you r getting ready for it in a positive way.

I have the same cancer, also stage A.

I had a craniofacial resuction surgery and 28 radiotherapy sessions.

I finished my treatment last September.

please feel free to pm whenever u have a concern or question. It's a rare tumor but u can win it especially that you are not in an advanced stage. Good luck stay positive. Keep us posted.

 

take care,

Goyca

MrsMCrn

DX ENB Dec 2014 "newbie"

Hello All. Thank you for being on here. My husband, Charlie, was diagnosed with ENB in December and underwent a craniofacial anterior skull base resection 1/29/15 at Emory University Hospital.  We were just mapped for targeted radiation yesterday. We really do hope to get some opinions from others going through or having gone through this. 

I am sad we have to meet this way.

We have gotten conflicting information on having chemo. Unfortunately there is not enough research on this subject that no one can make a good argument for or against. His PET scan came back negative and so far his follow-up MRIs show clean margins. Has anyone on here had similar ENB of the olfactory area extending up into the skull?  If so has anyone done radiation? Chemo?  Any opinions or experiences to share?

I too am new to a "chat room", so it may take me a time or two to get it right. 

Bless you all, you are now on my prayer list. 

MrsMC

debbiejeanne

MrsMCrn said:

DX ENB Dec 2014 "newbie"

Hello All. Thank you for being on here. My husband, Charlie, was diagnosed with ENB in December and underwent a craniofacial anterior skull base resection 1/29/15 at Emory University Hospital.  We were just mapped for targeted radiation yesterday. We really do hope to get some opinions from others going through or having gone through this. 

I am sad we have to meet this way.

We have gotten conflicting information on having chemo. Unfortunately there is not enough research on this subject that no one can make a good argument for or against. His PET scan came back negative and so far his follow-up MRIs show clean margins. Has anyone on here had similar ENB of the olfactory area extending up into the skull?  If so has anyone done radiation? Chemo?  Any opinions or experiences to share?

I too am new to a "chat room", so it may take me a time or two to get it right. 

Bless you all, you are now on my prayer list. 

MrsMC

hi, first i'm very sorry you

hi, first i'm very sorry you need to be here but I'm glad you found us, welcome to the family.  I'm not sure what ENB is.  I know we have a member here who had OBN which is also of the Olfactory and she had a craniofacial resection in July 2014.  I do believe her's also involved her lower skull.  She is now doing very well.  Her name is Goyca.  Look her up, she would be happy to help you with any questions.  I'm assuming your husband's cancer and Goyca's cancer are similar.  I will be praying the doctors come up with a good plan for you husband.  it is a rough road, but very doable.  Come here with your questions and someone will always try to answer you quickly.  what you get here is information for one's personal experience, not some made up crap.  this is a very good place to be with many, many helpful members.  be strong and know that we are here for you and your hubby.

God bless you,

dj

Goyca

Hello MrsMC. Sorry you have

Hello MrsMC. Sorry you have to go through this. If by ENB u mean esthesioneuroblastoma

it is the same as olfactory neuroblastoma.

as Debbie said , I went through the same cancer. Went through a craniofacial resection surgery on June 2014.the tumor was in my left sinuses area reaching base of skull. Then started radiotherapy for 28 sessions. I know its a rare tumor but this I the most common course of treatment.

if ur husband hasn't started treatment yet let him gain more calories now eat very well. And don't be afraid of the radio side effects, they are annoying but can be dealt with.

I already sent u a msg about my case. If u have any concerns plz do share them. It's good for u to know that my surgery went great and the treatment too and till now the MRIs are clean.

 

good luck. Don't be afraid of this cancer. Ur husband should stay strong and positive and hopefully all of this will end soon

Goyca.

Meegs

Hi San Fran
I have had the

Hi San Fran

I have had the same cancer but mine metastasised to neck lymp nodes and then spinal fluid. This seems to be a rare occurance for a rare cancer and mine was/is very aggressive. Due to this I have had lots of radiation and three different chemos so feel free to message me if you have any questions or want to talk!

 

hope your doing ok

San Francisco

question about cranio

if you are stage a, why did they do the craniofasial surgery? Is it because of the places it was located? I am having surgery March 9th but it will be endoscopic. I am waiting for my doctor to call me this weekend, he is going to go over my imaging results. I have read over them and looked at the pictures and it appears to have gone to the paranasal sinuses hich would put me at stage B And possibly is in the orbit area, which would stink. I can't read too much into it because I am NOT a doctor so hopefully he calls soon. But I am curious why they decided to not do endoscopic for you.I'm a big researcher, so I like to know as much as I can when I talk to the doctor so I can ask good questions. Hopefully I will hear from you soon. Thanks for posting.

San Francisco

MrsMCrn said:

DX ENB Dec 2014 "newbie"

Hello All. Thank you for being on here. My husband, Charlie, was diagnosed with ENB in December and underwent a craniofacial anterior skull base resection 1/29/15 at Emory University Hospital.  We were just mapped for targeted radiation yesterday. We really do hope to get some opinions from others going through or having gone through this. 

I am sad we have to meet this way.

We have gotten conflicting information on having chemo. Unfortunately there is not enough research on this subject that no one can make a good argument for or against. His PET scan came back negative and so far his follow-up MRIs show clean margins. Has anyone on here had similar ENB of the olfactory area extending up into the skull?  If so has anyone done radiation? Chemo?  Any opinions or experiences to share?

I too am new to a "chat room", so it may take me a time or two to get it right. 

Bless you all, you are now on my prayer list. 

MrsMC

treatment options

w hat stage is your husband? When I have researched medical studies they only ever discussed chemo if the patient was a stage C. It seems stage A Leaves people more options and sometimes they only need surgery sometimes they only do radiation and sometimes they do both. Stage B in the studies usually did both surgery and radiation, sometimes chemotherapy. So according to the official medical research studies that have been done on the few patients with this disease, staging makes a big difference in the route you take.

 

it's pretty awesome he's got clean margins that's wonderful. My doctor said if he got big enough clean margins he would leave me alone after surgery and not recommend radiation. So I think the margins make a big difference too.