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Ganglioneuroblastoma

ashlie.zahnd
Posts: 1
Joined: Aug 2013

Hi everyone!

I know there are other threads on this topic but I wanted to start another because they haven't had much activity recently.

I'm looking for some advice and hopefully reassurance. My son was diagnosed with ganglioneuroblastoma last summer 2012 and had a major surgery to remove the tumor. They believe they removed it all and based on tumor genetics he's cancer free. We have been rejoicing for over a year now but I'm a little concerned. Did we do everything necessary to be sure it hadn't spread and are we doing everything to be sure it won't come back? He's just having simple ultrasounds every 6 months along with blood and urine tests and our oncologist would like to have completely released us before now but knows I'm apprehensive so he's continuting these simple tests. My son had an initial follow-up CT at 3 months but other that and the bone marrow biopsies with surgery we haven't done anything else. 

I've read cases where this type of cancer reoccurs, where people have much more extensive follow-up and that it can even come back as neuroblastoma which is much more aggresive and deadly.

Any experience or advice for a worried mother?

Thank you in advance!

Ashlie

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