olfactory neuroblastoma diagnosis

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!