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MPNST & NF - Any long-term survivors?

Posts: 4
Joined: Jan 2011

Every bit of news I get about this terrible cancer is bad. Has anyone with NF survived an MPNST for more than 5 years?

My son had a very aggressive 11.5 cm tumor removed from his pelvis. They are going to re-scan his lung today to find out if a spot they found is a met.

I am so scared! Please, if anyone has had a good outcome, please let me know.

Posts: 2
Joined: Jan 2011

Yes there are longterm survivors. I have NF and so does my sister. I had 23cm MPNST removed from my pelvis 3 years ago this month. My sister had one in her shoulder 20+ years ago. Both of us have not had any spread or local recurrence. It is very scary to read information that is out there and even from the Doctors. In my opinion the rarity of this type of turmor affects the information used to create the stats the Doctors use. I try not to worry too much about the future. In regards to lung mets, the first year the Doctors thought they saw someone that concerned them in my lung but followup test found nothing. They tend to freak out a bit when you have NF and cancer and need to be extra catious. I hope everything works out well for your son. I can't advise you on what to do but I will share what I do. Take everything the Doctors say about the stats etc with a grain of salt, they can only use the data they have available.Surgerical and radiation treatment have greatly improved. My sister actually didn't ask for prognosis at all and when she followed up to get some damaged tendons repaired the Oncologist nearly fell off his chair when he saw how long ago the surgery was. We are all individuals and thats what the stats do not show.

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