Anyone here with Neurofibromatosis Type 1?

pudelpointer · May 2021

Hello,

I have Neurofibromatosis Type 1 (NF1). I have had a spot on my breast monitored every 6 months since 2017, they are sure it is benign. However, yesterday they found a new spot and want a biopsy asap, so I go in Monday morning. I am nervous about the fact I have increased risk of breast cancer because of NF1, but also the rush on the biopsy.

I was just curious if anyone here has NF and what their experience has been. Having NF decreases survival rates and I am super nervous.

Thanks.

ElaineTherese · May 2021

Hi!

I don't have NF1, but my sister and nephew do. (My nephew has a benign brain tumor that is monitored every six months via MRI.) I did genetic testing, and I do not have the genes currently associated with breast cancer. My sister is keeping a close eye on her situation; so far, she's had problems with cysts on her ovaries but nothing going on in her breasts so far. Hope someone else with NF1 stops by soon! ((Hugs))

pudelpointer · May 2021

thanks for replying. My results finally posted to the portal and found out it is BIRADS 5. Ugh.

ElaineTherese · May 2021

Ugh is right. There is still a small chance that it's benign. Let us know how it turns out. ((Hugs))

pudelpointer · May 2021

Thanks. I will update.

Anyone here with Neurofibromatosis Type 1?

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