ILC PCR ACHIEVED ER + PR + HER -

FaithAndTrust

I just want to say to anyone being told CHEMO not always effective for ILC this was not the case for me. I have entered my diagnosis details below but not sure if I did it correctly ..diagnosed 2014 mainly ILC with small ductal as well Grade 2 ER+ 20% Plus 2 nodes showed on but six plus showed on US so never been quite sure how many involved. But CHEMO did an amazing job and can work for ILC.

kar123

Chemo worked well for me too. I had a 7.5 cm tumor and it shrunk it to 3 cm. It wasn't fun for sure, but glad I did it. Wonderful it worked for you!!!

momand2kids

Hi

another ILCer here-almost 10 years out--- I also did chemo--- 4 rounds--it was rough but I have never regretted it.... I am in excellent health and hpe to stay there for a long time!!!!

FaithAndTrust

thanks Kar123 you also had a great response to the CHEMO.. good for you.

Do you know how you were staged? I was staged 2 but sometimes feel it should've been more because of lack of clarity over number of nodes??I had three tumours all individually small between 1-2.5 cm but altogether 10cm of area because of how ILC forms..was your 7cm one tumour or a few?

FaithAndTrust

hear hear Mom... thanks for your response and great you are ten years out..

Momine

Yes, I am also someone for whom it worked well. It did not achieve PCR in my case, but did shrink a giant tumor down to a fraction of its original size. The idea that chemo "doesn't work" for ILC seems to be based largely on the fact that PCR is less likely with ILC than with IDC. However, PCR is quite rare either way.

There was a large study a few years ago that looked at longterm outcome, comparing ILC and IDC, and it concluded that chemo contributed as much to longterm survival in ILC patients as it did for IDC patients, regardless of whether PCR was achieved (in cases of neoadjuvant chemo). So I consider the adage about chemo not being useful in ILC to be a myth.

FaithAndTrust

momine great you also had such good response. I just its important that ladies newly diagnosed with ILC are aware CHEMO can and does work...as it did for us.

Sim10

Hi All, I was diagnosed with Stage 3, moderate grade, lymph involvement Invasive Lobular in the right breast. I just had my 2nd chemo and had an ultrasound. My initial tumor was 2cm and is now 3cm. After seeing my oncologist who said, its too early to tell if the growth of 1cm to the tumor is cancer, or dead cells, tissue or odema, as sometimes this can happen. Ive also read that chemo doesnt always respond to Invasive Lobular and its a multi pronged approach. I am HR ER positive, tomorrow i go for my third chemo im on FEC x 3 and the D another 3, then booked in for Bilateral Masectomy then radiotherapy for 5 weeks and hormonal therapy. I am freaking out, as its grown but could be dead tissue. Ive been advised that they wont really know till the masectomy. They are not concerned as ive only had 2 chemo out of 6. Anyone in the same boat. I am 55 post menopausal and live in Sydney Australia. Thanks to all and good luck to everyone xxx

Moderators

Dear Sim10,

Welcome to the community. We are sorry about your diagnosis and treatment but glad that you reached out to our members. We hope that you will find support and helpful information here to help you along the way. You also may want to check out the Forum for those who live in Australia. We look forward to seeing you here. The Mods

Annette_U

I agree with these ladies...chemo does work for ILC. It shrunk my cancer mass and made getting an MX with clear margins easier. I'm not sure which chemo protocol works best as I see survivors here that have had FEC or AC and different numbers of Taxol or Taxotere. BUT........ so far ....so good for me! I say go for the chemo if offered (or ask for it) and try to get on AI's after chemo/rads. It's been 6 yrs for me since being diagnosed.