Questions to Ask Doctor

Hi, Fly. I've got PILC, too. Someone can correct me if I'm wrong, but I think any time there's skin involvement, the staging is automatically IIIB. Was the tumor very close to the surface? You mom's tumor really isn't that big at 1.3 cm.

Generally chemo is done first to shrink the tumor down so a lumpectomy can be done instead of a mastectomy. But if your mom has skin involvement, they'll have to do a mastectomy anyhow, so I'm not sure why they're recommending neoadjuvant chemo. That's something to get a couple of onc opinions on.

HER2 is a protein that is sometimes overexpressed in breast cancer tumors, making the tumor more aggressive. ILC is almost always HER2 negative, but the pleomorphic variant that your mom has is occasionally HER2+. Mine was not, BTW. If by some weird chance her HER2 testing comes back positive  (there are two lab methods--ICH and FISH--so you'll probably end up seeing both on reports when you get them), then there is a targeted therapy called Herceptin that can be added to the chemo to specifically stop the HER2 overexpression. 

Oncotype DX is a test that is run on the tumor sample after surgery to look at the DNA of the tumor. You can read about it at www.oncotypedx.com. It is used for ER/PR positive tumors where there is no node involvement. You will need to find our your mom's ER/PR status. ILC is almost always hormone positive, but sometimes there are exceptions, and typically those exceptions would be in the pleomorphic variant. Back to Oncotype--the test measure how hormone responsive the tumor is, meaning how well would it respond to hormone therapy like Tamoxifen or Arimidex, vs. responding to chemo. The test gives a score--low, intermediate, high--with a % chance of recurrence.  A low recurrence score--under 18--means that the tumor should be very hormone responsive, and that chemo wouldn't help much. A high score over 30, I think it is, means the opposite, and that chemo would help a lot. Most women seem to score in the intermediate range of 18-30, which is a grey area.

My Oncotype with my PILC was 18, which was just barely in the intermediate range, but was somewhat high for an ILC tumor. My tumor was also only moderately ER/PR positive. We're seeing a lot of low scores (9-11 range) for ILC girls on this board,  b/c their tumors are highly ER/PR expressive and they'll benefit the most from hormone therapy. 

Hope that helps a little. And yes, the beginning is the hardest, and yes, you will be a pro at this really fast! Your mom is lucky to have you.

Thanks, Nancy.

Fly, wanted to add--Oncotype is clinical validated for Stage I and II node negative cancers. I don't know if your mom having skin involvement, and hence being Stage IIIB, completely precludes use of the test in your mom's case. It probably will. That will be another good question for the oncologist, though.