Hello Lanie & welcome to Healing Well. I happened across your post here & wanted to respond. I am very sorry to read about your diagnosis. Cancer of any kind is not what anyone ever wants to hear they have. I did a forum search here & could not find anyone with this particular breast cancer. I did a quick read on NIH site since I know nothing about this form of breast cancer. I am assuming you are being scheduled to see a specialist.
This forum is pretty slow & I am not sure if it has a moderator or not. When a forum doesn't have a mod things tend to get slow.
Since this is such a rare form of breast cancer perhaps you may consider coming here & posting your journey. We have a lot of readers here at HW, anyone can read these threads but only members can post. Your journey would probably help lots of women.
Hopefully we will hear from you again. Take care.
Moderator in Chronic Pain & Psoriasis Forums