Choosing No Chemo

Hi, Maze. A positive sentinel node will pretty much buy chemo, regardless if it's ILC or IDC. You're right--there haven't been any further studies done on ILC and chemo after that one by Dr. C.

The reason a lot of ILC probably responds better to HT than to chemo is b/c a lot of ILC is grade 1 and hormone positive. I had a grade 2, pleomorphic ILC, which is considered the equivalent of a grade 3 IDC (there's also some debate among pathologists as to whether ILC should be graded with the SBR scale like IDC or not). Grade 2 and 3 tumors respond better to chemo than grade 1 tumors do. 

We have some ILC girls on this site who have had neoadjuvant chemo and had their tumors respond, even grade 1 tumors. So it's not an absolute thing that ILC should not be treated with chemo. I had 4 doctors tell me I had to do chemo, partly b/c of age (38) and tumor size (2.7cm), even though I had negative nodes. 

How hormone positive is your friend's tumor? If it's expressing ER/PR in the 80-90% range, it may be a good course of action to go straight to HT. Mine was in the 30-50% range, depending on the sample, so that was another reason I wasn't comfortable with HT alone.

Have you plugged her numbers into Adjuvant Online? If you haven't, you can access it at www.adjuvantonline.com. It's a calculator that will give you the benefit of chemo and HT, both alone and combined.

I'm not sure if Oncotype DX can be run if there's a positive sentinel node--I think that still may be in trial right now, but you can ask her onc if s/he'll run it anyhow on her tumor. That test will give a score that puts the patient in a low, medium or high risk of recurrence category. Low scores also indicate that the tumor is hormone sensitive, and will respond better to HT than chemo. Conversely, a high score tumor should have a good response to chemo. I was an 18, which is the low end of the medium risk category, so my Oncotype really didn't help much. But I did have one onc tell me that if it came back low, say under 10, that he'd put me on HT only.

So, basically, the things to consider are: how old is your friend, how hormone positive is the tumor, what is the tumor grade and what does Adjuvant Online say? Also see about the feasibility of Oncotype DX with the positive SNB.

Don't know if Dr. C does phone consults--he may. I wanted to go see him b/c he's the only onc in the country with a clinical interest in pleomorphic ILC, but then I met a woman who sees him for her Stage IV PILC, and she said that he doesn't make a big deal out of her subtype at all. So for all I know, he's taken to lumping ILC in with IDC like the rest of the onc world.

Good luck to your friend--she's lucky to have you helping her! 

I'm sorry to butt in to this coversation, but it just happened to catch my eye. They have ordered a oncotype for my mother and she does have a positive node. I don't if there are different types of tests or not?? We are really new to all of this, but I know for sure they are waiting for a company from Ca. to contact her to see if her ins. will cover this test. They said if her number is low enough they do not want her to do chemo as they feel there will be no benefit.