Second opinion on olfactory neuroblastoma

dfs56
dfs56 Member Posts: 9
in Head and Neck Cancer #1

What doctor/hospital would you go to for a second opinion on this type of tumor.  I have just been diagnosed and worry that the head and neck surgeon that I will see on June 1, 2016 may not be familiar with this tumor.  I have read that it is very rare.  Thanks for any information you can give me.

Comments

  • wmc
    wmc Member Posts: 1,804
    edited May 2016 #2
    Welcome to H&N group

    They do say it is very rare, but we have had several members here. I also have read it has very good odds of survival. Here is a list of National rated hospitals and you can change it to State, Nation, Head & Neck [ENT] and cancer.

    http://health.usnews.com/best-hospitals/rankings/cancer

    I will try to remember who they were, it was three I believe and all did fine.

    Bill

  • Bsauls94518
    Bsauls94518 Member Posts: 32
    #3
    My Experience with ENB

    Hi, I was diagnosed in September of 2015 and found that this is indeed a rare tumor. It had me worried and I did my research on the best places to go.  I found that MD Anderson in Texas was really good with this type of tumor as well as some teaching schools on the East Coast. My doctor was from Oakland CA Kaiser and I asked him about other options as I really wanted to have the best care. He did rotations with Johns Hopkins and had strong ties with the surgeons and teachers back east. He also attended a conference on ENB just after we met, so that put me at ease.  The surgery was about 8 hours and the first couple days were rough but they were able to get negative margins and no need for Radiation or Chemo.  

    I have been in touch with another survivor that is on this site and she is doing well.  The diagnosis sucks and it's very scary to face but you will make it! Read, research but only pay attention to the medical sites like this one or the teaching schools that have solid medical research backing them up.  Take care of yourself and make sure you have a strong support team in your corner.  This group of people on this site really helped me keep my sanity and even bring a smile to my face when I was having a tough day.  Cancer sucks but kicking it's butt to the curb was most satisfying.  

  • dfs56
    dfs56 Member Posts: 9
    #4
    Bsauls94518 said:

    My Experience with ENB

    Hi, I was diagnosed in September of 2015 and found that this is indeed a rare tumor. It had me worried and I did my research on the best places to go.  I found that MD Anderson in Texas was really good with this type of tumor as well as some teaching schools on the East Coast. My doctor was from Oakland CA Kaiser and I asked him about other options as I really wanted to have the best care. He did rotations with Johns Hopkins and had strong ties with the surgeons and teachers back east. He also attended a conference on ENB just after we met, so that put me at ease.  The surgery was about 8 hours and the first couple days were rough but they were able to get negative margins and no need for Radiation or Chemo.  

    I have been in touch with another survivor that is on this site and she is doing well.  The diagnosis sucks and it's very scary to face but you will make it! Read, research but only pay attention to the medical sites like this one or the teaching schools that have solid medical research backing them up.  Take care of yourself and make sure you have a strong support team in your corner.  This group of people on this site really helped me keep my sanity and even bring a smile to my face when I was having a tough day.  Cancer sucks but kicking it's butt to the curb was most satisfying.  

    Thank you

    Thanks for replying to my question.  I did see that other people have gone to MD Anderson in Texas.  I live in New York State.  I will be seeing a local head and neck surgeon that is supposed to be the best in our area for this type of cancer.  I have no problem getting on a plane to seek a second opinion.  This is all so scarry right now.  I am glad there are others, like you, that I can talk to and seek advise from. 

  • dfs56
    dfs56 Member Posts: 9
    edited May 2016 #5
    wmc said:

    Welcome to H&N group

    They do say it is very rare, but we have had several members here. I also have read it has very good odds of survival. Here is a list of National rated hospitals and you can change it to State, Nation, Head & Neck [ENT] and cancer.

    http://health.usnews.com/best-hospitals/rankings/cancer

    I will try to remember who they were, it was three I believe and all did fine.

    Bill

    Thank you

    Thanks Bill for replying and sending me this sight. 

  • donfoo
    donfoo Member Posts: 1,773 Member
    #6
    dfs56 said:

    Thank you

    Thanks for replying to my question.  I did see that other people have gone to MD Anderson in Texas.  I live in New York State.  I will be seeing a local head and neck surgeon that is supposed to be the best in our area for this type of cancer.  I have no problem getting on a plane to seek a second opinion.  This is all so scarry right now.  I am glad there are others, like you, that I can talk to and seek advise from. 

    MSKCC

    One of the best is in NY. Memorial Sloane Kettering Cancer Center. Good luck!

  • duck1255
    duck1255 Member Posts: 40
    #7
    Cleveland Clinic

    Depending where you are in New York state Cleveland Clinic has been really super for me

  • wmc
    wmc Member Posts: 1,804
    #8
    duck1255 said:

    Cleveland Clinic

    Depending where you are in New York state Cleveland Clinic has been really super for me

    Cleveland rates higher with ENT

    Of those two I would pick Cleveland even if I had to travel. Cancer Sloan is #2 but Cleveland is #12 but with ENT Cleveland is #7 [that is where the cancer is] and Sloan is #43

    Just my thoughts on it and how I chose mine.

    Bill

  • Blasty
    Blasty Member Posts: 7 Member
    #9
    Diagnosed Yesterday with Olfactory Neuroblastoma

    Hi, I'm trying to learn a little about this rare tumor.  I'm glad that I found this site.  I've been to several doctors over the last year and half, and had several misdiagnosis and finally Olfactory Neuroblastoma.  My only systems are loss of most of my smell, lack of energy, and not breathing out of one nostril.  I would like to hear from anyone that has gone through this.  Were you able to smell after surgery or is that gone forever?  I've done so much research on all the things that I didn't have, so it's very tiring to have to start all over.

  • Bsauls94518
    Bsauls94518 Member Posts: 32
    #10
    Blasty said:

    Diagnosed Yesterday with Olfactory Neuroblastoma

    Hi, I'm trying to learn a little about this rare tumor.  I'm glad that I found this site.  I've been to several doctors over the last year and half, and had several misdiagnosis and finally Olfactory Neuroblastoma.  My only systems are loss of most of my smell, lack of energy, and not breathing out of one nostril.  I would like to hear from anyone that has gone through this.  Were you able to smell after surgery or is that gone forever?  I've done so much research on all the things that I didn't have, so it's very tiring to have to start all over.

    ENB recovery

    Hi there, I went through my surgery last November.  I did lose my taste and smell for several months but it did slowly come back.  It took a while and I felt I was learning to smell again, some sensations breif and hard to identify and once in a while a reassuring old smell would come back.  I didn't focus too much on the senses being gone and one day they were mostly back.  Find a good doctor that you really trust and surround yourself with a group of positive like minded people and you will be fine.  The methods have really come a long way and treatement is growing by leaps and bounds.  Private message me if you have questions, I'm not online as much these days as we moved to the country and internet connectoin is not what we had in the city LOL.  

  • Lucy626
    Lucy626 Member Posts: 5
    edited September 2018 #11
    ENB with Radiation and Chemo

    Can any of you tell me if you were treated  with Chemo and radiation after surgery and how are you doing now ? My husband starts Chemo and radiation on Monday 9/17... he already is feeling lousy and I’m worried that this will make him worse .Any words of wisdom ,knowledge ,goals expectations .. .If anyone with Onb or ENB that has had surgery radiation and chemo please message me and tell me you are surviving and doing well ! Please !! Prayers to all ! 

     

     

  • susanherz
    susanherz Member Posts: 6 Member
    edited September 2018 #12
    Lucy626 said:

    ENB with Radiation and Chemo

    Can any of you tell me if you were treated  with Chemo and radiation after surgery and how are you doing now ? My husband starts Chemo and radiation on Monday 9/17... he already is feeling lousy and I’m worried that this will make him worse .Any words of wisdom ,knowledge ,goals expectations .. .If anyone with Onb or ENB that has had surgery radiation and chemo please message me and tell me you are surviving and doing well ! Please !! Prayers to all ! 

     

     

    ENB with Radiation and Chemo

    Hi Lucy, I was diagnosed with ENB in April of 2017. I had surgery to remove the tumor followed by 6 weeks (30 treatments) of radiation. I did not receive chemo. I was told that surgery followed by radiation was the protocol for this type of tumor. I am just over one year out from completing radiation and my MRI's have come back with no signs of reoccurance. From what I understand, this cancer can be beaten. You will just have to be vigilant. Sending prayers for you and your husband. God bless.

  • EllenG.
    EllenG. Member Posts: 5
    edited April 2019 #13
    susanherz said:

    ENB with Radiation and Chemo

    Hi Lucy, I was diagnosed with ENB in April of 2017. I had surgery to remove the tumor followed by 6 weeks (30 treatments) of radiation. I did not receive chemo. I was told that surgery followed by radiation was the protocol for this type of tumor. I am just over one year out from completing radiation and my MRI's have come back with no signs of reoccurance. From what I understand, this cancer can be beaten. You will just have to be vigilant. Sending prayers for you and your husband. God bless.

    Hi Susan, I see that you have

    Hi Susan, I see that you have had the same treatment that I had recently for ENB.  I was diagnosed with Kadish B after a surgery to remove my tumor found that it was cancerous.  I am in the last few days of completing my radiation therapy.  I'm very anxious about the chance of recurrence as well as the long term side effects of the radiation.  If you could share more of your experience it would be helpful.  I'd like to be part of this community and share information for the years to come.  Thanks.

  • AngieR15
    AngieR15 Member Posts: 10
    #14
    Bsauls94518 said:

    ENB recovery

    Hi there, I went through my surgery last November.  I did lose my taste and smell for several months but it did slowly come back.  It took a while and I felt I was learning to smell again, some sensations breif and hard to identify and once in a while a reassuring old smell would come back.  I didn't focus too much on the senses being gone and one day they were mostly back.  Find a good doctor that you really trust and surround yourself with a group of positive like minded people and you will be fine.  The methods have really come a long way and treatement is growing by leaps and bounds.  Private message me if you have questions, I'm not online as much these days as we moved to the country and internet connectoin is not what we had in the city LOL.  

    Hey, when they did your

    Hey, when they did your surgery did they remove your entire olfactory nerve? I had surgery 5 weeks ago and my sense of smell is completely gone and I was told I would never get it back since they removed the entire nerve.

  • AngieR15
    AngieR15 Member Posts: 10
    #15
    Bsauls94518 said:

    My Experience with ENB

    Hi, I was diagnosed in September of 2015 and found that this is indeed a rare tumor. It had me worried and I did my research on the best places to go.  I found that MD Anderson in Texas was really good with this type of tumor as well as some teaching schools on the East Coast. My doctor was from Oakland CA Kaiser and I asked him about other options as I really wanted to have the best care. He did rotations with Johns Hopkins and had strong ties with the surgeons and teachers back east. He also attended a conference on ENB just after we met, so that put me at ease.  The surgery was about 8 hours and the first couple days were rough but they were able to get negative margins and no need for Radiation or Chemo.  

    I have been in touch with another survivor that is on this site and she is doing well.  The diagnosis sucks and it's very scary to face but you will make it! Read, research but only pay attention to the medical sites like this one or the teaching schools that have solid medical research backing them up.  Take care of yourself and make sure you have a strong support team in your corner.  This group of people on this site really helped me keep my sanity and even bring a smile to my face when I was having a tough day.  Cancer sucks but kicking it's butt to the curb was most satisfying.  

    Hey I was told by my doctor I

    Hey I was told by my doctor I may not need radiation or chemo same as you. I am concerned about reaccruance if I don’t get it.

  • wbcgaruss
    wbcgaruss Member Posts: 2,484 Member
    #16
    EllenG. said:

    Hi Susan, I see that you have

    Hi Susan, I see that you have had the same treatment that I had recently for ENB.  I was diagnosed with Kadish B after a surgery to remove my tumor found that it was cancerous.  I am in the last few days of completing my radiation therapy.  I'm very anxious about the chance of recurrence as well as the long term side effects of the radiation.  If you could share more of your experience it would be helpful.  I'd like to be part of this community and share information for the years to come.  Thanks.

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  • AngieR15
    AngieR15 Member Posts: 10
    #17
    susanherz said:

    ENB with Radiation and Chemo

    Hi Lucy, I was diagnosed with ENB in April of 2017. I had surgery to remove the tumor followed by 6 weeks (30 treatments) of radiation. I did not receive chemo. I was told that surgery followed by radiation was the protocol for this type of tumor. I am just over one year out from completing radiation and my MRI's have come back with no signs of reoccurance. From what I understand, this cancer can be beaten. You will just have to be vigilant. Sending prayers for you and your husband. God bless.

    Hey Susan,

    Hey Susan,

    i am very interested to know how your radiation went? Also how have you been since? I had surgery last month and am still waiting on the pathology report to find out the grading and whether or not I will need radiation. I have a baby and I am extremely anxious about getting radiation... I am also nervous not to get it.. any insight from you would be greatly appreciated!

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