General Category > NF2
Extremly worried about NF2
Willbur:
--- Quote from: Susan A on January 16, 2017, 11:49:45 am ---Willbur, I'm curious as to why you were tested for NF2? You only mention one AN and no other tumors. Most people with an AN don't have NF2, and most people with NF2 have multiple tumors. Even if someone with mosaic NF2 only has one AN, they almost always have other tumors (tho obviously it is possible to find one before the others appear.) Honestly, I think your chances of having NF2 are very, very, small! Hopefully you are reassured by Kathleen's comments and by the fact that, even with one AN, you will have regular follow up MRIs, so your docs will be able to look for any signs of other tumors.
--- End quote ---
Willbur, I'm curious as to why you were tested for NF2? - Anyone under 30 is considered at risk for NF2 or at least from what I read and what the genetics counselor told me.
Most people with an AN don't have NF2, and most people with NF2 have multiple tumors. - I know they can grow in other parts of the body, but I've never had a scan done on any other parts of my body.
Honestly, I think your chances of having NF2 are very, very, small - I think between her and my doc my worries have subsided. The doc told me statistically speaking he is about 100% sure I don't have it.
Kathleen_Mc:
Willbur: Did you have your scan yet?
Kathleen
Willbur:
--- Quote from: Kathleen_Mc on January 24, 2017, 04:15:11 am ---Willbur: Did you have your scan yet?
Kathleen
--- End quote ---
Yea had it a week before Jan 24th. Nothing appears on my left side.
Kathleen_Mc:
Great news !
Susan A:
That's great news Willbur! Glad to hear your scan was negative and that the doc is so sure you don't have NF2 :-) An AN alone is enough to deal with!
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