Discussions By Condition: Brain conditions

neuroblastoma survivor w/ ?'s

Posted In: Brain conditions 0 Replies
  • Posted By: Anonymous
  • June 22, 2006
  • 04:15 AM

Hi, I am a 31 yr old female who had been diagnosed with Abdominal Neuroblastoma at the age of 5 months. I was treated in Boston, Ma in 1975-76.

My parents didnt speak much about it or inform me with any details of the treatments I recieved. Unfortunetly I have lost both my parents to different types of cancer and now I am old enough to ask questions, and I have many of them.

My first question is,

I have approx. 2 dozen scars on my back in the shape of circles probably the size of pennies. I am told that when I was younger they were very deep, and even today, several of them are still very sensitive. Is anyone familiar w/ the treatment that I might have recieved or what they were caused from?

Growing up as a child I can remember being embarrassed by them and my dad always telling me that they were victory scars and I should be proud to have them, which today, in my adult life, I am.

I am not even sure what stage my cancer was when diagnosed and which treatments I recieved. I was so relieved when I bought this computer and found this web site, now I have a chance to research exactly what Ive always wondered about.

I also have the scar around my waiste which I have seen and also read some info about. The scars on my back are nothing like Ive ever seen before on anyone else, and when I show doctors even they seem blown away, the best way to describe my back is that they are like a leopard print in pattern and shape.

I requested my files from boston when I carried my first of 2 children, and I recieved a minila folder with VERY little information, I am assuming its because of the # of years which have passed, is there any type of library in which I can utilize to research my case that anyone out there knows of?

I thank you in advance, like I said Im new to this, and Im very interested in finding as much knowladge of the possible treatments I may have recieved.

I tried to donate blood recently and I was denied because of the chemo I recieved, which kinda scared me and sparked my initial hunt.

Thank You Again. :)

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