Trying to understand my diagnosis

Kelligirl5

I was diagnosed with Paget's Disease in late March and had surgery to remove the nipple on May 15th. I guess I was not really understanding Paget's in general as an aggressive cancer. I was told stage 0, grade 3 DCIS. Today they told me I am ER - and didn't really go over the rest but said its typical that Paget's is not hormone related. So I'm assuming this means I am triple negative but was just too dense to understand what the doctor has been trying to tell me! The good news in all of this was that my nodes were clear, my margins were very clear and it's out of me. The bad news would then be the fact that its triple negative. What does this even mean for me? We caught it extremely early, it was not invasive and again no nodes affected. I should be doing a happy dance and yet here I am in a complete panic! The surgeon said today that I would probable not be offered a hormone blocker, just radiation? Is that standard protocol? I keep reading with triple negative chemo is standard?? I see the surgeon on Friday and want to be prepared with the RIGHT questions this time!! When she said I was ER- I thought it was a good thing!!! Now I'm in panic mode again wondering if I've made the right decisions with just a lumpectomy.Am I really going to be stressing out for the next few years praying for no reoccurance??/

Meow13

Not sure, did you ask why radiation? Is it because you are er negative? There are risks associated with radiation that I found doctors really down play.

moth

radiation is standard after breast conserving procedure.

Check out the articles on DCIS http://www.breastcancer.org/symptoms/types/dcis/tr...

And consider having the oncotype DCIS test done to determine if you would benefit from chemo since you cannot rely on hormone blockers to protect you.

Best wishes