Neurofibromatosis Support Group
Neurofibromatosis is usually noncancerous. There are three types of this condition. Type 1 usually appears in childhood, while Types 2 and 3 appear in early adulthood. Type 1 can cause bone deformities, learning disabilities, and high blood pressure. Type 2 can cause hearing loss, vision loss, and difficulty with balance. Type 3 can cause chronic pain throughout the body....
Has anyone else ever had an abnormal mammogram? I had one yesterday, abnormal. Now I have to go back for an ultrasound. I can't feel any lumps. but I figure there is a good chance if I have a tumor it is NF, not cancer. Anyone else go through this?
petals
An abnormal finding could mean several things. Did you tell them about NF? There is a thread in the women's section of the CTF BB that discusses this exact issue and some of those women have had abnormal pictures that turned out to NF related. Still with the slight increase in breast cancer that is associated with NF, it is definitely good to get it ruled out. I hope you get some reassurances.
deleted_user
Yea, I have had several "call backs" due to the tumors. Now they just compare them from the last years tests, I have to be checked annually due to my grandmother (she had nf also) had breast cancer. prayers for you, Marah
Marah
Thanks ladies. On my side I guess is absolutely no history of breast cancer in my family. But then there was no history of NF either. So.....
petals
Oops just to be clear, there is an increased risk of breast cancer in NFers but the women that posted on the CTF BB thread that I was talking about had abnormal scans that turned out to be regular NF tumors, not breast cancer. So it can definitely happen that the abnormality is just a neurofibroma...or even some other weirdness that is neither NF nor cancer. Just re-read my post and didn't think I had worded it well. Good luck to you and please keep us posted. I'll keep my fingers crossed that all is well.
deleted_user
whats the ctf board??
rose77
It could just be your NF tumors. I remember the first time I went the tecnition came back into the room after they looked at the films and told me that they needed to take more and that they needed to take them over again. Then it hit me I forgot to tell them about the NF. So she talked to the DR and said everything was ok. Anyway it true they just compare them to last years at this point. I have also had it done to close to my period and had to go back because they get a different picture from that.
Marah
The doctor said it is not an NF tumor. He says he can tell because of where it is, deep down in the breast tissue. But he doesn't think it is cancer. Apparently benign tumors tend to be nice and regular (just like mine) and cancer tumors tend to look like puffy clouds. So anyway, he is trying to decide whether to do a biopsy or to just re ultrasound it every 6 months.
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