olfactory neuroblastoma

ninnyscott
ninnyscott Member Posts: 12
edited March 2014 in Head and Neck Cancer #1
Well, I had my surgery on the 31st, and am going for my followup tomorrow. They will remove the packing left in my nose and maybe have my pathology reports. Hoping to know whether I will be having the radiation treatments. I know more than likely I will but hoping I don't. Does anyone have an opinion on different clinics. I am going to Lee Moffit cancer center in tampa but I live in Plant city. we have a radiation clinic here but I am wondering if it is possible to not get as good of treatment there as opposed to staying at the cancer center for my treatments.

I felt dizzy for a few days and nausea after my surgery, has anyone else had that? I feel like I am being a wimp. My dr said I should be able to go back to work after 10 days. Just hope I feel like it.

For some reason it just makes me feel better to be able to talk about things. Thanks to everyone for writing, it helps me by reading what others go through and how they deal with it.

take care,

margie
«1

Comments

  • Scambuster
    Scambuster Member Posts: 973
    #2
    IMRT
    Hi Margie,

    I understand if you can have a choice with radiation, you get IMRT as opposed to the standard. This may mean you have to go twice a day but the intensity of the doses are 'modulated' to be more effective to hit the cancer while causing less 'collateral damage' to surrounding tissue. You will find good info on the net about IMRT or ask your Doctors.

    Hope it all goes well and you don;t need it.

    Regds
    Scambuster
  • Hal61
    Hal61 Member Posts: 655
    #3
    No Wimps Here
    Hi Margie,
    Congratulations on getting your surgery done so quickly. You're anything but a wimp, and don't be afraid to tell your doctor how you feel about going back to your job. You are the authority on that issue, and right now you are doing a great job of recovering. Dizziness and nausea would seem to me to be par for the course for surgery on the 31st, depending on severity. Talk to your surgeon or specialist about that when you get your pathology, and hopefully they will both be lessening in frequency and severity.

    My radiation for SCC, base of tongue, two lymph nodes involved was IMRT, but only once per day. I have no idea of what you're prescribed regimen might be if it is needed, but I know most people here getting "regular" radiation are receiving IMRT. Joking and laughing are always good medicine along with good nutrition. My best wishes are with you and your family.

    Hal
  • ninnyscott
    ninnyscott Member Posts: 12
    #4
    Scambuster said:

    IMRT
    Hi Margie,

    I understand if you can have a choice with radiation, you get IMRT as opposed to the standard. This may mean you have to go twice a day but the intensity of the doses are 'modulated' to be more effective to hit the cancer while causing less 'collateral damage' to surrounding tissue. You will find good info on the net about IMRT or ask your Doctors.

    Hope it all goes well and you don;t need it.

    Regds
    Scambuster

    Thank you, looked up IMRT
    Thank you, looked up IMRT and found there is a certification which my local rad clinic does not seem to have. Will ask about that today at the doctor's office

    Thanks

    Margie
  • ninnyscott
    ninnyscott Member Posts: 12
    #5
    Hal61 said:

    No Wimps Here
    Hi Margie,
    Congratulations on getting your surgery done so quickly. You're anything but a wimp, and don't be afraid to tell your doctor how you feel about going back to your job. You are the authority on that issue, and right now you are doing a great job of recovering. Dizziness and nausea would seem to me to be par for the course for surgery on the 31st, depending on severity. Talk to your surgeon or specialist about that when you get your pathology, and hopefully they will both be lessening in frequency and severity.

    My radiation for SCC, base of tongue, two lymph nodes involved was IMRT, but only once per day. I have no idea of what you're prescribed regimen might be if it is needed, but I know most people here getting "regular" radiation are receiving IMRT. Joking and laughing are always good medicine along with good nutrition. My best wishes are with you and your family.

    Hal

    Thanks for the
    Thanks for the encouragement. guess I still need to be taking it one day at a time.

    margie
  • SIRENAF42
    SIRENAF42 Member Posts: 202
    #6
    Good Luck
    I was diagnosed with the same cancer, Esthesionueroblastoma (also known as Orlfactory Nueroblastoma), you can read my information on my profile. Make a list of questions when you go see your doctor, dont be afraid to ask, also try and bring someone with you to all your appointments. Sometimes you get overwhelmed with all the "information" and you will need another pair of ears to hear what you may have missed. I would go home sometimes in a fog, information overload.

    Good luck in whatever your decision is, please let us know how you are doing!!

    Laugh and smile everyday!... :)
    Sirena
  • chark
    chark Member Posts: 14
    #7
    ninnyscott said:

    Thanks for the
    Thanks for the encouragement. guess I still need to be taking it one day at a time.

    margie

    Ninnyscott
    I too was told I have Olfactory Neuroblastoma after my sinus surgery. I am trying so hard to wrap my head around it. I lost my Mom in 2008 to cancer. May I ask you a few questions. Do you have children and how did they handle it. I am trying to figure out what the Hyman grading scale means. My path report labels it a II and IV. You had your surgery really soon. I don't have my first appointment at the hospital in Boston until July 15 for my initial appointment, that is like 3 weeks since my diagnosis. Well I hope you are recoving and I will be praying for you. God is good.

    Christy
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #8
    chark said:

    Ninnyscott
    I too was told I have Olfactory Neuroblastoma after my sinus surgery. I am trying so hard to wrap my head around it. I lost my Mom in 2008 to cancer. May I ask you a few questions. Do you have children and how did they handle it. I am trying to figure out what the Hyman grading scale means. My path report labels it a II and IV. You had your surgery really soon. I don't have my first appointment at the hospital in Boston until July 15 for my initial appointment, that is like 3 weeks since my diagnosis. Well I hope you are recoving and I will be praying for you. God is good.

    Christy

    Christy, welcome to CSN. I
    Christy, welcome to CSN. I cannot answer your questions but wanted to welcome you. YOu have come to the right place for answers. There are many people here who will answer your questions and provide you with support. Since we've all faught the battle or are currently fighting the battle, we know what you're feeling. We know what it is like to be scared, to wonder what the trmnts will be like, will we survive, etc. There are many, many survivors here, some fighting C more than once. Anyway, I just wanted to say welcome and you will be all our prayers.
    God Bless,
    debbie
  • chark
    chark Member Posts: 14
    #9
    debbiejeanne said:

    Christy, welcome to CSN. I
    Christy, welcome to CSN. I cannot answer your questions but wanted to welcome you. YOu have come to the right place for answers. There are many people here who will answer your questions and provide you with support. Since we've all faught the battle or are currently fighting the battle, we know what you're feeling. We know what it is like to be scared, to wonder what the trmnts will be like, will we survive, etc. There are many, many survivors here, some fighting C more than once. Anyway, I just wanted to say welcome and you will be all our prayers.
    God Bless,
    debbie

    Thank you debbiejeanne!
    I am finally able to sleep so that has helped. Family and friends are so encouraging and God is so good.
    Happy 4th of July to all of you.

    Christy
  • Unknown
    Unknown
    #10
    SIRENAF42 said:

    Good Luck
    I was diagnosed with the same cancer, Esthesionueroblastoma (also known as Orlfactory Nueroblastoma), you can read my information on my profile. Make a list of questions when you go see your doctor, dont be afraid to ask, also try and bring someone with you to all your appointments. Sometimes you get overwhelmed with all the "information" and you will need another pair of ears to hear what you may have missed. I would go home sometimes in a fog, information overload.

    Good luck in whatever your decision is, please let us know how you are doing!!

    Laugh and smile everyday!... :)
    Sirena

    This comment has been removed by the Moderator
  • SIRENAF42
    SIRENAF42 Member Posts: 202
    #11
    unknown said:

    This comment has been removed by the Moderator

    Yes Gracie, it was really
    Yes Gracie, it was really worth it! Every time I hug my kids I smile and know, it was all worth it!

    God bless!!
  • robe68
    robe68 Member Posts: 13
    #12
    unknown said:

    This comment has been removed by the Moderator

    Dear Gracie
    For my part, I can definitely say it was all worth it. From my original diagnosis till now, I have had a son and watched him grow for the past 2 years. It has been an utter joy.

    From a fellow survivor,
    Rich
  • brian1145
    brian1145 Member Posts: 2
    #13
    SIRENAF42 said:

    Good Luck
    I was diagnosed with the same cancer, Esthesionueroblastoma (also known as Orlfactory Nueroblastoma), you can read my information on my profile. Make a list of questions when you go see your doctor, dont be afraid to ask, also try and bring someone with you to all your appointments. Sometimes you get overwhelmed with all the "information" and you will need another pair of ears to hear what you may have missed. I would go home sometimes in a fog, information overload.

    Good luck in whatever your decision is, please let us know how you are doing!!

    Laugh and smile everyday!... :)
    Sirena

    THANK YOU!!
    Sirenaf42 thank you for your encouragement and kind words during rough times. I had to have four surgeries to my head and neck and radiation treatment will be soon. I spent 10 days in intensive care and 7 days in a regular room just par for the course I guess. Right now I'M taking it one day at a time, and just recovering from all the surgeries that were done. My doctors are very optimistic about my recovery. I lost my smell and I do miss it but hey I'm not complaining if that's all I loose. However I did suffer memory loss but doctors said it should only be short term. THANK YOU for helping me get through this and continue to stay in touch.
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #14
    chark said:

    Thank you debbiejeanne!
    I am finally able to sleep so that has helped. Family and friends are so encouraging and God is so good.
    Happy 4th of July to all of you.

    Christy

    Christy, I'm glad it worked.
    Christy, I'm glad it worked. You are so right, GOD IS GOOD!!
    GOD bless you,
    debbie
  • mqt
    mqt Member Posts: 2
    #15
    OLFACTORY NEUROBLASTOMA
    Margie and all,
    I have been diagnosed with olfactory neuroblastoma cancer on my left side of nose and eye and had gone thru 2 cycles of chemo therapies and now waiting on MRI results to determine surgically remove cancer and later with radiation treatment. I am having blurry vision especially on my left eye. Margie and forum, please fill me in what to expect from this rare case of cancer. Can this type of cancer be beaten, vision can be restored? How long do I expect to be out for surgery?

    Thanks so much in advance!

    Mike
  • SIRENAF42
    SIRENAF42 Member Posts: 202
    #16
    mqt said:

    OLFACTORY NEUROBLASTOMA
    Margie and all,
    I have been diagnosed with olfactory neuroblastoma cancer on my left side of nose and eye and had gone thru 2 cycles of chemo therapies and now waiting on MRI results to determine surgically remove cancer and later with radiation treatment. I am having blurry vision especially on my left eye. Margie and forum, please fill me in what to expect from this rare case of cancer. Can this type of cancer be beaten, vision can be restored? How long do I expect to be out for surgery?

    Thanks so much in advance!

    Mike

    :)
    Hi Mike, I am a 3 year survivor of Esthesionueroblastoma (another name for olfactory neuroblastoma), read my profile for my story. My cancer was in my ethmoid sinus and nasopharnyx, luckily it had not spread to my eyes or bone.

    Please feel free to email me at sirenaf44@yahoo and I will help out in any way I can!

    Hang in there, you are not alone my friend!

    Sirena
  • mqt
    mqt Member Posts: 2
    #17
    SIRENAF42 said:

    :)
    Hi Mike, I am a 3 year survivor of Esthesionueroblastoma (another name for olfactory neuroblastoma), read my profile for my story. My cancer was in my ethmoid sinus and nasopharnyx, luckily it had not spread to my eyes or bone.

    Please feel free to email me at sirenaf44@yahoo and I will help out in any way I can!

    Hang in there, you are not alone my friend!

    Sirena

    Thank You!
    Thanks Sirena for your prompt and informative response. I feel very comforting and
    encouraged that you had the same type of cancer and had made that cancer history.
    Does IMRT radation treatment work best for olfactory neuroblastoma cancer? It surely worked
    for you. Some friends suggested me to proton radiation treament. I would appreciate your
    advice and inputs.

    Thanks again!
    Mike
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #18
    Lee Moffit Cancer Center Tampa
    Not sure how I missed this one Margie...sorry.

    I live in Lakeland and Watson Clinic Center for Cancer Care and Research is also affilliated with Moffit...very good place.

    I went/go to Watson Clinic here in Lakeland.

    Hoping all is well with you and yours.

    Best,
    John
  • SIRENAF42
    SIRENAF42 Member Posts: 202
    #19
    mqt said:

    Thank You!
    Thanks Sirena for your prompt and informative response. I feel very comforting and
    encouraged that you had the same type of cancer and had made that cancer history.
    Does IMRT radation treatment work best for olfactory neuroblastoma cancer? It surely worked
    for you. Some friends suggested me to proton radiation treament. I would appreciate your
    advice and inputs.

    Thanks again!
    Mike

    Treatment
    I know people who have had IMRT and Proton for our type cancer. Im not sure of why one gets one type and one gets another, maybe its the size and location? I would ask your radiation oncologist for an explanation of the different types. When I had my treatments, I didnt know anybody with our type cancer, so I had no clue of what to do or what was going to happen. So I just went with the flow of my schedule at MD Anderson. I look back and think I must of looked like a zoombie or something, just moving wherever they wanted me to go. How do you know what questions to ask, when you dont even understand your cancer? It just crazy and mindboggling.
  • olivia46
    olivia46 Member Posts: 28
    #20
    SIRENAF42 said:

    Treatment
    I know people who have had IMRT and Proton for our type cancer. Im not sure of why one gets one type and one gets another, maybe its the size and location? I would ask your radiation oncologist for an explanation of the different types. When I had my treatments, I didnt know anybody with our type cancer, so I had no clue of what to do or what was going to happen. So I just went with the flow of my schedule at MD Anderson. I look back and think I must of looked like a zoombie or something, just moving wherever they wanted me to go. How do you know what questions to ask, when you dont even understand your cancer? It just crazy and mindboggling.

    Just diagnosed with olfactory neuroblastoma
    Hi Sirenaf42 and all:

    I was just diagosed with olfactory neuroblastoma. I'm going to see a radiation oncologist and a neurosurgeon soon. The operation will be within 6 weeks. Just wonder what to prepare for questions and what to expect of the operation. I was seeking 2nd opion and came to u penn hospital in Phili.

    I'm glad to find this support group, however, not familiar with the site yet.

    Thanks,

    Olivia46
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #21
    olivia46 said:

    Just diagnosed with olfactory neuroblastoma
    Hi Sirenaf42 and all:

    I was just diagosed with olfactory neuroblastoma. I'm going to see a radiation oncologist and a neurosurgeon soon. The operation will be within 6 weeks. Just wonder what to prepare for questions and what to expect of the operation. I was seeking 2nd opion and came to u penn hospital in Phili.

    I'm glad to find this support group, however, not familiar with the site yet.

    Thanks,

    Olivia46

    SuperThread...
    Welcome Olivia...LOL, if you hit that post button more than once because it's slow, you'll end up with four posts... we've all done it.

    Here is a link to Sweetblood (Dawn's) accumulation of links and information you might find very helpful.

    SuperThread

    Best,
    John

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