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Ganglioneuroblastoma



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dancer21

				          
            Posts: 2

          
          
            Joined: May 2003

          
        					
				
		
									

        			    May 26, 2003 - 6:04pm			  			

			
			
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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cardan

				      
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July 2, 2003 - 12:31am

			
Re: Ganglioneuroblastoma
			
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



			
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dancer21

				      
	        Posts: 2

	      
	      
	        Joined: May 2003

	      
	    				
		
			
July 27, 2003 - 3:23pm

			
Re: Ganglioneuroblastoma
			
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



			
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torey's picture
						
torey

				      
	        Posts: 11

	      
	      
	        Joined: Jan 2001

	      
	    				
		
			
October 13, 2003 - 1:41pm

			
Re: Ganglioneuroblastoma
			
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.



			
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Brycesmom

				      
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	        Joined: Jan 2004

	      
	    				
		
			
January 16, 2004 - 12:33pm

			
Re: Ganglioneuroblastoma
			
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! 



			
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kellikaspar

				      
	        Posts: 1

	      
	      
	        Joined: Mar 2004

	      
	    				
		
			
March 21, 2004 - 8:35pm

			
Re: Ganglioneuroblastoma
			
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.  



			
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dancer21

				      
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April 9, 2004 - 4:50pm

			
Re: Ganglioneuroblastoma
			
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



			
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kellikaspar

				      
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April 12, 2004 - 3:49pm

			
Re: Ganglioneuroblastoma
			
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



			
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dancer21

				      
	        Posts: 2

	      
	      
	        Joined: May 2003

	      
	    				
		
			
April 22, 2004 - 5:49pm

			
Re: Ganglioneuroblastoma
			
Hi kelli just wondered if you received my email?

Hows things going?

x



			
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Irishchick

				      
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	        Joined: Sep 2005

	      
	    				
		
			
September 7, 2005 - 11:16am

			
Re: Ganglioneuroblastoma
			
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.



			
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dancer21

				      
	        Posts: 2

	      
	      
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September 29, 2005 - 11:32am

			
Re: Ganglioneuroblastoma
			
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



			
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ViktorMayrin

				      
	        Posts: 1

	      
	      
	        Joined: Sep 2005

	      
	    				
		
			
October 1, 2005 - 10:51pm

			
Re: Ganglioneuroblastoma
			
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.



			
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Diorssister

				      
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	        Joined: Sep 2006

	      
	    				
		
			
September 11, 2006 - 9:47pm

			
Re: Ganglioneuroblastoma
			
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.



			
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dancer21

				      
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November 13, 2007 - 1:19pm

			
Re: Ganglioneuroblastoma
			
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. 



			
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