Ganglioneuroblastoma

dancer21
dancer21 Member Posts: 18
edited March 2014 in Childhood Cancers #1
Having had a large mass removed from my adrenal gland, it turned out to be a cancer called ganglioneuroblastoma, a rare childhood cancer. Im 21!No one seems to know much about it and the doctors are keeping quiet until ive had further scans. I was wondering if anyone had come across this before or had any advice for me. Having heard many tales about treatment, Im very worried about it and scared as to what might happen to me. I would love to hear any words of encouragment or information.
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Comments

  • cardan
    cardan Member Posts: 5
    #2
    dancer21,
    I'm new to this web site..but by now I'm sure you have found out what you needed to know. I work at a pediatric hospital and have some connections with the Hem/Onc Dr's. Hope all is well with you and if you need anything....

    Keep Smilin'

    cardan
  • dancer21
    dancer21 Member Posts: 18
    #3
    cardan said:

    dancer21,
    I'm new to this web site..but by now I'm sure you have found out what you needed to know. I work at a pediatric hospital and have some connections with the Hem/Onc Dr's. Hope all is well with you and if you need anything....

    Keep Smilin'

    cardan

    Hello,
    Thanks for replying to my message. It's been a few weeks since ive been on here and I'm still none the wiser over my diagnosis. Im currently still having tests but things are moving very slowly.I would be most grateful for any information you could find regarding ganglioneuroblastomas. It's driving me mad not knowing what it is and why it's there!
    Thank you very much, all the best

    dancer21 x
  • torey
    torey Member Posts: 10
    #4
    dancer21 said:

    Hello,
    Thanks for replying to my message. It's been a few weeks since ive been on here and I'm still none the wiser over my diagnosis. Im currently still having tests but things are moving very slowly.I would be most grateful for any information you could find regarding ganglioneuroblastomas. It's driving me mad not knowing what it is and why it's there!
    Thank you very much, all the best

    dancer21 x

    hi, I am 21 also and am proud to tell you that as of July 2nd of this year I am a cancer free..and the cancer was Neuroblastoma. I did it and sweetie you can too!
    What state are you in? I am NY. There is a great hospital in NYC. I was there this summer for surgery because my cancer came back. The hospital is Sloan-Kettering Memorial Cancer Center. Tell your doctors about it, get on-line and you find out about it. The surgeon is world known and absolutely amazing. Can't give you any better advice than to have your doctors contact someone there...they treat Neuroblastoma well. I am from the Rochester area and knew noone who had Neuroblastoma, went to NYC this summer for sugery and a lot of people there had it. People from all over go to this hospital.
    I know I keep saying Neublastoma and you said you have Ganglioneuroblastoma....and when I have a biopsy done it is what I had at that time. I am not definite on what it is and I wouldn't want to say something and have it be wrong.
    I hope this helps some...
    Let me know if you want to just talk. Honestly, I have never met anyone my age with this and would love to talk to you!

    Torey

    you can e-mail be at Torey22@excite.com if you want to talk more. I check that e-mail more than i check on here.
  • Brycesmom
    Brycesmom Member Posts: 1
    #5
    Hello,
    Go to ACOR.org go to neuroblastoma {this is a message board} there is a man who has been diagnosed with neuroblatoma and is currently in treatment. I'm sure he would be able to shed some light on treatments and other valuable info. Hope this helps!
  • kellikaspar
    kellikaspar Member Posts: 2
    #6
    Hello, just found this site because my husbands sister is 20 and diagnosed with ganglioneuroblastoma. The biggest problem is that she lives in Jordan not the USA. We live in NC and have been talking to doctors at Duke Hospital which say they treat this type of cancer. We are in the beginings since she was just diagnosed a little over a month ago. We cannot find much about this type of cancer either. We have gotten all her records involving this disease mailed here and are now waiting for the actual slides from the biopsy with the samples on it. We want to know if we should have her flown here to have the surgery and treatment. Her family overseas has not told her waht she has until they know everything. she thinks she had a simple cyst removed. the doctors here want to know what stage the cancer is in but none of the literature we have received from her doctors in Jordan say anything of staging. We feel she may not get the best treatment there b/c of lack of experience (the country only has 4 million people, very small). Any info you find out would be greatly appreciated b/c we are in the same boat, not knowing! If you could let us know what type of treatment you are receiving and at what hospital that will help. Our bigest problem will be paying for her treament if she needs to come to the States b/c her insurance will not be accepted here as far as we know. Her tumor is exactly where yours is, attached to the outside of her adrenal gland. It has touched a lymph node and expanded to her bone. The reports are very unclear as to how bad it has spread, one mentions only the lymph, one mentions only the bone, others say nothing of either lymph or bone. It is very confusing. I ask doctors at Duke if there is a good chance of survival with this cancer and they say they cannot tell me until all reports have been studied. You are not alone as you can see and we will keep you in our prayers as well.
  • dancer21
    dancer21 Member Posts: 18
    #7
    kellikaspar said:

    Hello, just found this site because my husbands sister is 20 and diagnosed with ganglioneuroblastoma. The biggest problem is that she lives in Jordan not the USA. We live in NC and have been talking to doctors at Duke Hospital which say they treat this type of cancer. We are in the beginings since she was just diagnosed a little over a month ago. We cannot find much about this type of cancer either. We have gotten all her records involving this disease mailed here and are now waiting for the actual slides from the biopsy with the samples on it. We want to know if we should have her flown here to have the surgery and treatment. Her family overseas has not told her waht she has until they know everything. she thinks she had a simple cyst removed. the doctors here want to know what stage the cancer is in but none of the literature we have received from her doctors in Jordan say anything of staging. We feel she may not get the best treatment there b/c of lack of experience (the country only has 4 million people, very small). Any info you find out would be greatly appreciated b/c we are in the same boat, not knowing! If you could let us know what type of treatment you are receiving and at what hospital that will help. Our bigest problem will be paying for her treament if she needs to come to the States b/c her insurance will not be accepted here as far as we know. Her tumor is exactly where yours is, attached to the outside of her adrenal gland. It has touched a lymph node and expanded to her bone. The reports are very unclear as to how bad it has spread, one mentions only the lymph, one mentions only the bone, others say nothing of either lymph or bone. It is very confusing. I ask doctors at Duke if there is a good chance of survival with this cancer and they say they cannot tell me until all reports have been studied. You are not alone as you can see and we will keep you in our prayers as well.

    Hello,
    So sorry to hear about your husbands sister.
    I'd be more than happy to try to answer any questions you may have on this type of tumor. Since my diagnosis I have done my best to find what little information I can about it so maybe I could shed some light for you. It would be nice to communicate with someone else who also has been diagnosed with this rare cancer.
    I dont know how often you come on here but perhaps we could arrange a time to chat in one of the discussion rooms or perhaps leave an email address for me.
    Meanwhile I hope things are going as smoothly as possible for your family, in what is a very stressfull time, especially with her living so far away from you.
    Best wishes and hope to hear from you soon
  • kellikaspar
    kellikaspar Member Posts: 2
    #8
    dancer21 said:

    Hello,
    So sorry to hear about your husbands sister.
    I'd be more than happy to try to answer any questions you may have on this type of tumor. Since my diagnosis I have done my best to find what little information I can about it so maybe I could shed some light for you. It would be nice to communicate with someone else who also has been diagnosed with this rare cancer.
    I dont know how often you come on here but perhaps we could arrange a time to chat in one of the discussion rooms or perhaps leave an email address for me.
    Meanwhile I hope things are going as smoothly as possible for your family, in what is a very stressfull time, especially with her living so far away from you.
    Best wishes and hope to hear from you soon

    Dancer21, My email address is kellikaspar@yahoo.com Please feel free to email me anytime and we can share any informations we both get. Stay strong. Kelli
  • dancer21
    dancer21 Member Posts: 18
    #9
    kellikaspar said:

    Dancer21, My email address is kellikaspar@yahoo.com Please feel free to email me anytime and we can share any informations we both get. Stay strong. Kelli

    Hi kelli just wondered if you received my email?
    Hows things going?
    x
  • Irishchick
    Irishchick Member Posts: 1
    #10
    dancer21 said:

    Hello,
    So sorry to hear about your husbands sister.
    I'd be more than happy to try to answer any questions you may have on this type of tumor. Since my diagnosis I have done my best to find what little information I can about it so maybe I could shed some light for you. It would be nice to communicate with someone else who also has been diagnosed with this rare cancer.
    I dont know how often you come on here but perhaps we could arrange a time to chat in one of the discussion rooms or perhaps leave an email address for me.
    Meanwhile I hope things are going as smoothly as possible for your family, in what is a very stressfull time, especially with her living so far away from you.
    Best wishes and hope to hear from you soon

    Hi, My name is Aisling I'm 23years old and from Ireland. 3 months ago I was diagnosed with ganglioneuroblastoma. The doctors here are baffled. There is only 57 cases in the world recorded. There is no information or research on this topic at all. If any one can shed some light onto the situation. What are the treatment options and life expectency of such a disease. It is driving me mad because no doctors will tell me a thing. Any information would be greatly appreciated. Thank You. Aisling.
  • dancer21
    dancer21 Member Posts: 18
    #11
    Irishchick said:

    Hi, My name is Aisling I'm 23years old and from Ireland. 3 months ago I was diagnosed with ganglioneuroblastoma. The doctors here are baffled. There is only 57 cases in the world recorded. There is no information or research on this topic at all. If any one can shed some light onto the situation. What are the treatment options and life expectency of such a disease. It is driving me mad because no doctors will tell me a thing. Any information would be greatly appreciated. Thank You. Aisling.

    Hi Aisling just wondered if you got my email I sent? Like I said I'd be more than happy to talk to you and hopefully can answer some of your questions. I hope your well and look forward to hearing from you
    Dancer
  • ViktorMayrin
    ViktorMayrin Member Posts: 1
    #12
    Interesting. I just talked with my dad, cause I couldn't remember what type I had. I was diagnosed when I was 2 1/2 years old, and was treated at Children's Memorial Hospital. I'm now seventeen, and the only side effects I have are:
    2 less ribs on my left side
    lopsided (I lean to the right)

    That's about all.
  • Diorssister
    Diorssister Member Posts: 1
    #13
    ViktorMayrin said:

    Interesting. I just talked with my dad, cause I couldn't remember what type I had. I was diagnosed when I was 2 1/2 years old, and was treated at Children's Memorial Hospital. I'm now seventeen, and the only side effects I have are:
    2 less ribs on my left side
    lopsided (I lean to the right)

    That's about all.

    Hi everyone,
    Just wanted to introduce myself (am 24 and live in Australia). I have a 3year old sister with ganglioneuroblastoma, and have been trying to gather info on the topic. It has been very difficult to find, with most things directing me to neuroblastoma, however I have managed to find a few articles and websites with basic info. Just wanted to let anyone interested to let me know via this discussion board if they would like me to email them the stuff I have. Also, if anyone else knows anywhere that good info can be found it would be much appreciated if it could be shared. I know that the info I have is only based on children, but I am sure that some of the facts of the disease (i.e. staging, treatment) are similar or the same. Let me know if you are interested. Hope all is well.
  • dancer21
    dancer21 Member Posts: 18
    #14
    Diorssister said:

    Hi everyone,
    Just wanted to introduce myself (am 24 and live in Australia). I have a 3year old sister with ganglioneuroblastoma, and have been trying to gather info on the topic. It has been very difficult to find, with most things directing me to neuroblastoma, however I have managed to find a few articles and websites with basic info. Just wanted to let anyone interested to let me know via this discussion board if they would like me to email them the stuff I have. Also, if anyone else knows anywhere that good info can be found it would be much appreciated if it could be shared. I know that the info I have is only based on children, but I am sure that some of the facts of the disease (i.e. staging, treatment) are similar or the same. Let me know if you are interested. Hope all is well.

    Hi Diorsister,

    Thanks for your post. Havent been on this site for a while so only just noticed your message. I was just wondering how your sister is now? I hope all is ok.
  • Unknown
    Unknown
    #15
    This comment has been removed by the Moderator
  • Katiepie
    Katiepie Member Posts: 1
    #16
    dancer21 said:

    Hi Diorsister,

    Thanks for your post. Havent been on this site for a while so only just noticed your message. I was just wondering how your sister is now? I hope all is ok.

    rare cancer..
    Hello dancer and all.
    I may not know a lot about this rare cancer. But ill give it a try.
    When I was 3 almost 4 years old I had ganglioneuroblastoma. It was located on the left side
    of my abdomin, just floating and touching nothing. A women driving a car and reading at the same time happened to rear end my parents car with me in the back and save my life. (though she didnt know it at the time) The doctors found a lump in my stomach and said they didnt like it. They didnt quite know what it was until my cancer was removed. Here is the information Ive learned about it for all the years ive been cancer free.
    There are two types of this cancer. Ganglioneuroblastoma is beniene, which basically means it hasnt spread. Neuroblastoma is i think its called malignant, which means it does spread. The treatment for either cancer would be chemotheropy, or radiation.
    What my parents told me is that I would have basically only been able to live for a month. Though my cancer beniene it could still have spread.
    See basically ganglioneuroblastoma is a tumor inside a sack. If the cancer doesnt get taken care of soon enough then it turns into neuroblastoma.
    You could start with either. but if you have ganglioneuroblastoma get it taken care of fast as possible. Because once the sack explodes it gets all over everything in your body and you may not live.
    Im truly sorry for anyone whos had or has this rare cancer. When my tumor was taken out they sent it too a science fasility to be studied.
    I hope this information helps anyone that needs it out. if someone needs to talk to me just email me at racing_chick911@yahoo.com and label the subject cancer or ganglioneuroblastoma or neuroblastoma.
  • kwright09
    kwright09 Member Posts: 1
    #17
    dancer21 said:

    Hi Diorsister,

    Thanks for your post. Havent been on this site for a while so only just noticed your message. I was just wondering how your sister is now? I hope all is ok.

    Ganglioneuroblastoma
    Hi Dancer21 My name is Kyle and i live in Wisconsin. I was 3 years old when i was diagnosed with Ganglioneuroblastoma, and i am glad to hear that there is more than just me to survive this horrible cancer. When my mom first found out about the cancer the doctors had said that there was only known to be 1 other person in history that had this type of cancer and that if i were to survive (very unlikely) i would be the first. Since it was such a rare type of cancer they wanted to do surgery right away to remove the tumor from my adrenal gland. Make a wish was involved but never made it through process. I am now 22 years old and have not had any complications with the surgery. If you would like to know anything about recovering please feel free to ask me. I will check back on this site twice a week. Thanks much for posting on here.
  • jhaning0407
    jhaning0407 Member Posts: 1
    #18
    Wow, im sorry you are having
    Wow, im sorry you are having to go through all of this! I hope the doctors are letting you in as to what is going on and i hope you have a safe recovery!
  • lillpyro
    lillpyro Member Posts: 2
    #19
    torey said:

    hi, I am 21 also and am proud to tell you that as of July 2nd of this year I am a cancer free..and the cancer was Neuroblastoma. I did it and sweetie you can too!
    What state are you in? I am NY. There is a great hospital in NYC. I was there this summer for surgery because my cancer came back. The hospital is Sloan-Kettering Memorial Cancer Center. Tell your doctors about it, get on-line and you find out about it. The surgeon is world known and absolutely amazing. Can't give you any better advice than to have your doctors contact someone there...they treat Neuroblastoma well. I am from the Rochester area and knew noone who had Neuroblastoma, went to NYC this summer for sugery and a lot of people there had it. People from all over go to this hospital.
    I know I keep saying Neublastoma and you said you have Ganglioneuroblastoma....and when I have a biopsy done it is what I had at that time. I am not definite on what it is and I wouldn't want to say something and have it be wrong.
    I hope this helps some...
    Let me know if you want to just talk. Honestly, I have never met anyone my age with this and would love to talk to you!

    Torey

    you can e-mail be at Torey22@excite.com if you want to talk more. I check that e-mail more than i check on here.

    you had it too!!
    For the longest time growing up as a kid i didnt understand what it was. i was 6 months old when i got ganglioneuroblastoma! i like you have never met anyone with the disease either. i know that 5 of 1,000,000 children get it. thats only about 12,000 people in the world now in 2012 of 7 bilion. i just wanna say hi and hopefully get more of an understanding of what i had as a baby.
  • lillpyro
    lillpyro Member Posts: 2
    #20
    ViktorMayrin said:

    Interesting. I just talked with my dad, cause I couldn't remember what type I had. I was diagnosed when I was 2 1/2 years old, and was treated at Children's Memorial Hospital. I'm now seventeen, and the only side effects I have are:
    2 less ribs on my left side
    lopsided (I lean to the right)

    That's about all.

    i had it too
    i had the same disease and and just wanna say that its cool to finally know that im not the only weird personly shapped person out there from this cancer. i have two different sized hands two different colored eyes and only sweat on one side. so hi.
  • dancer21
    dancer21 Member Posts: 18
    #21
    How are you?
    Hi all,

    Not been on here for a while and just wanted to see how you were all getting on?
    I can't believe how quickly time had flown by. I am now almost 9 years in remission. However, still not a great deal known about us!

    Hope you are all keeping well.

    Best wishes

    x

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