Please reassure me before I go insane
Please note I do not need medical advice. I need support and positive stories right now
Today has been a bit of an emotional rollercoaster and I think I’m just looking for some reassurance from people who have been in similar shoes.
My son has NF1 and has faced many challenges since birth as a result. recent imaging showed changes in a plexiform neurofibroma that raised concern for possible MPNST. We were initially told the PET was reassuring, but a few hours later the doctor called to tell us the wrong report had been reviewed, and the actual PET report mentions moderate increased avidity “concerning for MPNST.”
We are now discussing biopsy and next steps with his team.
I know “concerning for” does not mean confirmed, and I also know NF tumours can sometimes behave in messy and unpredictable ways without it being malignant. Right now I think I’m just hoping to hear from families who have had scary MRI/PET findings, concerning uptake, biopsies, etc that did NOT end up being MPNST.
I’m not looking for false reassurance, just real experiences while we sit in the uncertainty and wait for the next step.
He’s handling all of this far better than I am. His main concern was whether he’ll still make T-ball on Friday because he’s just so tired of pain and missing out on normal life.
Thank you ❤️