Recently diagnosed with olfactory neuroblastoma

AngieR15
AngieR15 Member Posts: 10
in Head and Neck Cancer #1

I am a 27 year old who was diagnosed with olfactory neuroblastoma in March of this year (2019). I found the tumour in my nose in November but was told it was just a polyp until I finally seen an ENT. I had surgery to remove my tumour through my nostril in April at Toronto Western Hospital. They did the entire surgery through my nostril and removed the lining of my brain and replaced it with a graph from my leg. the tumour was 4x1x4.4 cm and did make contact with my brain (although not much). They removed the entire olfactour nerve and any surrounding tissue, bone etc. I am currently waiting to hear back on the grading of the tumour. The doctors say if it is low grade I will not need radiation. I have a million questions and I feel I am not getting clear answers from my doctors... I am hoping any other people who have experienced this can help me... thanks to anyone who offers some answers!

1. Has anyone not needed radiation after surgery? I am worried that I should get it even if they say I don’t need it.

2. What can I expect from radiation if I do get it? My doctor told me ”there’s nothing to it, it’s nothing like chemo” 

3. My doctor told me these tumours do not spread to other parts of the body and that if it came back it would come back in the same place I found it (in my nostril). This confuses me because it grew on my olfactory nerve which was totally removed.. also at another appointment he said it can come back in your lymph nodes... has anyone had it come back in a different spot?

4. My doctors also say that this cancer can be cured, has anyone else been told this?

Comments

  • Heather_Lynn
    Heather_Lynn Member Posts: 7
    #2
    AngieR15, I would suggest you

    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

  • raym372
    raym372 Member Posts: 12
    edited June 2019 #3
    Sorry to hear..
    I have been diagnosed with Esthesioneuroblastoma in April. I went in for a nasal polyps removal, but when trying to remove, it was determined to be a tumor. They could only do a biopsy. Biopsy results showed Esthesioneuroblastoma. It is in my right nasal cavity and ethmoid sinus, and starting to extend into dura. They did not have enough tissue to determine my grade. My surgery is scheduled for next week at MD Anderson.

    My doctors have determined that surgery followed by radiation of 6 weeks, as the current treatment plan. I will know more once they do the surgery and the grading. From what I am reading, the standard treatment plan is usually surgery followed by radiation. Each medical facility seems to handle a little differently. You may want to get a second opinion. The recovery rate seems to be good, but to reduce the chance of recurrence, they recommend radiation.

    My doctors will be doing all endoscopically. I have been told that they may do craniotomy if they do not get good margins endoscopically. How was your recovery from surgery?

    There are not many people with this type of cancer. Would like to connect with and you to share our experiences.
  • SueMac12
    SueMac12 Member Posts: 1
    edited January 2020 #4
    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. 

     

  • nehagill
    nehagill Member Posts: 24
    #5
    Second opinion in case of doubt

    i looks you ae taking too much hints from what your doctor has to say. Trust him if you believe him and go on with the treatment as suggested by him. If you have difficulty maintaining a healthy doctor-patient relationship with your doctor then maybe its time for you to take a second opinion. Though it is true that this cancer does not relapse (mostly) and the prognosis is also good. 

    Good luck to you.

  • raym372
    raym372 Member Posts: 12
    #6
    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. 

     

    Hope your husband is doing well
    I had my surgery in May/June of 2019. I had 2 surgeries. Both of my surgeries were done endonasally.

    I had trouble sleeping for a while, immediately after my surgery, and was given anti-anxiety medicine, for a few days that seemed to help. I was given radiation, but was not recommended chemo in my case. I was very tired after 4-5 weeks into radiation, and had very little energy. It took me a few months to regain my energy.

    If you have any questions, please do not hesitate to contact me.

    Also, an advise to anyone trying to find information on esthesioneuroblastoma. In addition to posting on the website, I would recommend contacting the esthesioneuroblastoma patients directly by CSN email, for getting a quicker response.

    Ray
  • justbeingmebc
    justbeingmebc Member Posts: 7
    #7
    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. 

  • raym372
    raym372 Member Posts: 12
    edited January 2021 #8
    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. 

    Treatment
    Sorry to hear about your brother‘s diagnosis. Hope he feels better soon.

    This cancer is rare, and Mayo is one of the leading hospitals that treats this type of cancer. The other one’s that are known for treating this are - MD Anderson, Univ. of Michigan, Univ. of Virginia, Charlottesville and a few others.

    The type of treatment typically is surgery, followed by radiation. Sometimes, surgery is difficult when the tumor is large, and is close to other critical organs.

    However, UVa treats by doing chemo and radiation first, to shrink the tumor, and then they do surgery. They have good results. I do not know any other institutions that follow this protocol. In a few cases, MD Anderson has applied chemo first for a few of their patients.

    Has Mayo provided a treatment plan, for your brother?

    There are some threads on this site that provide information regarding this type of cancer.
    Here is another link in a different group on this site, that has many others who have documented their treatments.

    https://csn.cancer.org/node/155606

    If you have any questions, please let me know. And I really hope and pray that your brother gets the right treatment.


    Ray
  • Divya92
    Divya92 Member Posts: 4 Member
    edited April 2021 #9

    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

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member
    edited April 2021 #10
    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

    Divya92 We Are Here For Ya

    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.

     

    To post a new discussion topic on a discussion board:

    • Log on to your CSN account at www.cancer.org/csn using your username and password; you will be directed to the CSN Home page.

    • Click on ‘Discussion boards’ on the left navigation menu or under ‘Connect and Communicate’

    • Locate the discussion board of your choice.

    • Click the ‘Add new Forum topic’ link at the top of the discussion board page.

    • On the ‘Create Forum topic’ page, enter a title into the ‘Subject’ field and your message into the ‘Body’ field.

    • Select ‘Preview’ to see your completed message before it is posted.

    • To submit your message, select ‘Submit.’

    • When you select ‘Submit’ the message will be posted on the discussion board of your choice.

     

  • Divya92
    Divya92 Member Posts: 4 Member
    edited April 2021 #11
    Thank you Russ for reaching

    Thank you Russ for reaching out here and over messages. Really appreciate the support.

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