ILC 40s Node Negative - Did I make the right decisions?

Hi Sharon, - did you have the Oncotype testing done? What was your score? I can understand all of your questions (been there!) about your choices, but, at this point, it may be better to just move on, since you're past the point of opting for chemo. (not sure if you had radiation).

One question- with your preventative mastectomy next week, are they going to do a SNB? The reason I ask is because a sister of a close friend of mine had a double mastectomy (preventative on one side) and they only did a SNB on the side they knew had BC. After surgery, and too late for a SNB, it was found that the "good" side had cancer, also. It really messed with her head.

Hi

I think you have to make the best decision you can at the time with the info you have.  I actually had chemo (my oncotype was in the gray area, so I decided to take chemo).  I had no nodes and pretty clear margins at my lumpectomy.  I am heading into year 5-- was on lupron/femara-now just femara---- feel great.... 

I feel like I made the right decisions for me, but I know people with the exact same diagnosis who made different decisions--- no right or wrong--just what is right for you. 

Hi Butterfly,

I had bilateral prophylactic MX last May b/c of history of very dense breasts, multiple cysts, LCIS and a host of other things (including extreme stress and pain that was constant for 12 years) - thought I'd get the BPMX and no Tamoxifen for me. Sentinel node negative.

Pathology found ILC 3mm in the area where the LCIS had been. I'm on Tamoxifen. On Tuesday my MO told me that I'm basically a very healthy 40-something (eat well, exercise, and try to avoid undue stress) who listened to her body ... So barring any issues with endometrium, uterus, or ovaries... I hope I'm good to go.

I haven't told many of my family about this. 1) didn't want to burden them and 2) didn't think they'd understand or be supportive.

I'm happy with the choices that I've made thus far. The new boobies look a lot like the old boobies (L is LOOKS bigger than R) and the scar tissues are beginning to smooth out - DH likes them and refuses to call them "foobies" he says they're our boobies.

Good luck!

trying to figure all this out for my Mom,

she will not be getting chemo either- much like butterfly- she is well- you can see sig below

and her new RO said SAME thing pretty much! We really like him. he said "do the known risk factors/side effects outweigh the possible benefits?" when we asked about chemo- he rec only the radiation and hormone therapy.

but, no chemo, she doesn't actually have a MO yet- but one we met at a multidisciplinary clinic said that her oncotype would be low she guessed and that her 5.2cm ILC didn't warrant it.

she is starting radiation for 33treatments, begin next wk.

**WHEN does she start the hormone therapy??? she wants to start but the MO didn't mention till I mentioned/asked about it and we never got a clear answer except yes she should do HT.

oh, gotta go! hugs to all!

I am making an appt with the actual MO that we were hoping to see, just to see what he says. My mom wants to start the HT femara, and wants to start it like yesterday!!

*she is continuing to heal nicely from her BMX, though is noting some skin breakdown at surgical site...

Hugs to all