Recently diagnosed with olfactory neuroblastoma

AngieR15, I would suggest you get a second opinion. With what you gave said, it does not seem your doctors are following the same standard treatment plan that both facilities I was evaluated at would follow. I had radiation only, as my tumor was stage 2, we got clean margins in the second surgery, and my PET scan showed no involvement elsewhere. Chemo was a consideration, but ultimately it was decided it wasnt needed.

While there isnt a lot of cases, both facilities I was evaluated at get a couple of new patients every year. Their treatment plan was consistent with the information I could find online. This website has good information-you can register for free to read the article: 

https://emedicine.medscape.com/article/278047-overview

You have to do what you are comfortable with, just wanted to share what I have learned.

Heather

Hello, my husband was diagnosed with this disease right before Thanksgiving. He had surgery on the 14th of January. They went through his skull and side of nose. Did anyone that had this have trouble sleeping at night afterwards? Also his teeth continue to be very sensitive 2 weeks post op. We are so fortunate to be near Boston Hospitals, particulary the Beth Israel Deaconess. Our surgeon was the chief of the dept and as rare as it is he sees them frequently. Monday we receive the patalogy report to find out if he will be doing radiaton or radiation and Chemo. 

SueMac12 said:

Olfactory Neuroblastoma

Hello, my husband was diagnosed with this disease right before Thanksgiving. He had surgery on the 14th of January. They went through his skull and side of nose. Did anyone that had this have trouble sleeping at night afterwards? Also his teeth continue to be very sensitive 2 weeks post op. We are so fortunate to be near Boston Hospitals, particulary the Beth Israel Deaconess. Our surgeon was the chief of the dept and as rare as it is he sees them frequently. Monday we receive the patalogy report to find out if he will be doing radiaton or radiation and Chemo. 

 

justbeingmebc said:

My brother

My little brother was diagnosed with Olfactory Nueroblastoma December 21 2020. 

he is currently at Mayo in Rochester Mn. They have said they do not know much about this. His tumor is large 5.5×7.5×3.2 I believe. It has stolen who he was. He is blind now mostly and deaf in one ear. I feel like they have given up basically because he has state insurance. He can not come home because he can not care for himself. My mom is a mess. I live 400 miles away. Im just so lost right now. Everyone keeps coming to me because I am resourceful in finding help. But the lack of information and emotional stuff. Its so hard. This has effected his cognitive ability as well. Somedays are good some are bad. And I just kinda feel alone. Are there doctors out there that can help? Where it isn't all about the money. I read enough to know they are doing the cheapest possible. Then tried to put my 30 year old brother in a nursing home vs a rehab/cancer brain injury care facility. I have been to all the sites. Its all for kids. Anyone else have any luck? I want a second opinion. I will not give up on my baby brother. 

Divya92 said:

Hi All,

 

I just got diagnosed with olfactory neuroblastoma today after a call from my doctor. I had visited an ENT for a sinusitis check last week and he told me he found some growth and did a biospy and ordered a CT scan. He got the biopsy radiology results today and called me to inform of the diagnosis. He has referred me to a sinus cancer specialist and shared the biopsy slides with their institute for further inspection. I'm supposed to meet the new doctor on Friday.

 

I'm 29 years old and I'm just feeling helpless and so scared. I came across this website and this group so I feel like I'm not alone. 

 

How do I get over this anxiety? I want to be strong but atleast for today I can't stop crying for what lies ahead. 

 

I don't know if this group is active anymore but maybe posting here gives a semblance to my feelings.

 

Thanks,

Divya

We all know how you feel when you get the cancer diagnosis it feels like you got hit with ton O bricks. At 29 I am sure this was the last thing you expected. Do the best you can to calm down and not overthink this as to what next. It sounds like you did not wait a long time to get your sinuses checked so hopefully no matter what cancer should be small. It also sounds like you have a good doctor as he did not fool around about getting a CT scan and doing a biopsy. Sometimes the docs will get you to take a couple of rounds of antibiotics before they order a scan and take a biopsy. And he referred you right to a sinus cancer specialist-very good. I would like to say when you go to your appointments from now on take a notebook to write things down this will be a lot to think about and you will not be able to remember everything. Also if you can it is best to take a spouse, family member, or friend along to help you listen and write notes. two sets of ears are better than one. Don't look on the internet much except for stuff like finding out what terminology means and fact-based items. This is a great forum and a great group of people they will help you much. Stick with it. Stay calm trust in your medical doctors and medical team. Ask lots of questions and use your notepad to write down anything you want to ask when you go to see the specialist. Check out the Suprerthread at the top of the page it is loaded with information https://csn.cancer.org/node/261072 

Please don't worry cancer treatment has come a long way-You Got This!

That's about all I can think of at the moment but let me say6 again take someone along to your appointments for a second set of ears and to help write notes as you will be getting a lot of info and terms you may have never heard before. When you get your final diagnosis and treatment plan please let us know the staging of the cancer and type and size and the treatment plan they are recommending. And no matter how apprehensive you are please consider getting a second opinion if you are not comfortable with anything going on. And it is always said on here go to a cancer center or the bigger the hospital the more dedicated they are to cancer and if you can go to a cancer hospital such as MD Anderson. Here is a link to beast hospitals for cancer to give you an idea https://health.usnews.com/best-hospitals/rankings/cancer

You may want to start a new topic of your own case which may get more notice so if you do I am putting the instructions below-Wishing You The Best-Take Care-God Bless-Russ.

Below are instructions on how to start a new topic taken directly from the help section at the top right of the page CSN Help.

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