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!



  • mj1976
    mj1976 Member Posts: 3
    better late than never....



    It seems scary, but in low risk / intermediate cases, surgery can typically be the only treaatment option.  Odder still, residual tumor can be left behind where they may not opt to follow up with post-chemo.  This really goes back to all the volumes of work to better typify prognostic indicators / markers of the tumor biology.  Age (at least in my research) is the most important indicator, where 1.5 years or less have the best outcomes.  However, that is only because that age group is confounded with typically lower tumor stages (1, 2a, 2b, L1, L2).  If the biopsy of the removed tumor indicated ganglioneuroblastoma, that shows a more mature (less malignant) make-up, and many residual tumor cells can mature into ganglioneuroma (benign) from surgery alone provided they are not high risk types.

    The follow up blood/urine/CT/MIBG scans are a safeguard to catch any recurrence early enough that salvage therapy can be instituted with a high success rate.  NSE/VMA/HVA levels in the blood and urine become elevated in the presence of neuroblastoma (and sub-types), although not a definitive indicator on their own.  CT of the tumor bed and surrounds are ok, but MIBG is more of the standard test given its sensitivity to pick up much lower presence levels of active neuroblastoma (as well as ganglioneuroblastoma and ganglioneuroma).

    Given the age of your post, I am hoping you now have 4.5 years of event free survival behind you, and are rejoicing that ever approaching 5 year marker where most institutions consider your child cured.  The chances of recurrence/relapse go down exponentially, so I pray for just that situation.  Best wishes.