Pleomorphic ILC

toomuch,  You are asking a very good question.  I wonder about that sometimes.

We haven't heard from Eve1956 since September.  I hope she is O.K. 

SAMayoFL, Huge congratulations on finishing chemo!  There is a normal life waiting for you after chemo!  I honestly cannot say it will be "soon".  Be very patient because the "come back" process takes some time.  That's not true for everyone, I guess, but I think it's true for most of us.   

Hi all you PleoPals out there.  I just decided to come to the ILC board today and voila!  Here you all are on the old Pleomorphic thread, and I had to chime in.  With all the research I've done, I have to admit I haven't learned anything concrete about BC, especially pleomorphic ILC, and especially ER+PR- pleomorphic ILC.  Just about every aspect of BC is controversial, with conflicting data in the research.  And it keeps changing over time.  The reality is, nobody knows much.  We are really living with something that remains a huge mystery.  I hate that, but there it is.  I try to be philosophical about it, but sometimes it's hard.  I know, though, that I got good care.  I know the people treating me are doing everything possible.  The research I did gave me that reassurance.  I get the most important reassurance, though, right here from all of you.  I know that I am not crazy.  Sometimes my feelings have been so overwhelming I thought I was really lost.  I also know that we BC women who feel deeply about things seem to linger in this parallel universe.  We are so aware of our mortality, so aware of our vulnerability.  It changes everything for us.  Thank goodness we can talk to each other.

I have researched the ER+PR- stuff.  It seems to go along with some genomic instability in some cases, not all, and may mean higher proliferation levels and lower chance of response to endocrine therapy, though not always.  It is still controversial whether + - cases respond better to AI's than tamoxifen.   By 6 years after diagnosis there seems to be no difference in relapse rate compared to ++.  Some research links this to a higher proliferation rate, some doesn't.  Keep in mind these are primarily IDC cases.  Who knows if any of this relates to ILC.

In terms of being Grade 2 or Grade 3, I have found conflicting systems among different pathologists.  The Canadian system (Provincial Health Services Authority, British Columbia) says that with pleomorphic lobular "mitosis are easily identified", but in my case my mitotic rate was 1 and my s-phase fraction was very low.  The Stanford University pathology people say pleomorphic lobular is decided on the basis of the nucleus, and it could be graded 2 or 3 depending on mitotic rate.  That seems more in line with my pathologist.  I don't think all grade 2 nuclei would be called pleomorphic, but I don't know.  

I know it's hard for my husband to hear me talk about cancer.  I don't avoid the topic, but I have to not obsess either.  It is huge in my life, but I'm trying to make it less huge in "our" life.  Not easy, but I'm trying.  

It's great that we PILC's can talk, since there are so very few of us around.  Sending big hugs to all of you today!!!  G. 

http://www.radiologyassistant.nl/en/4793bfde0ed53#a479b01fd6acf8

mymountain,  This link has really good info on kinds of calcifications and what they mean.  Hope this helps you a bit.  Hugs, G. 

Looks like us Histologic Grade 2 Pleomorphic Lobulars are pretty hard to classify using the GGI.

This is from an ASCO abstract, 535, and includes some pleomorphics.

Background: The utility of histological grade (HG) in invasive lobular carcinoma (ILC) remains controversial as one of the 3 Elston-Ellis components (tubule formation) is not present. Pleomorphic ILC (PILC) is a subtype of ILC characterized by an aggressive clinical behaviour. Genomic grade index (GGI) is a 97-gene signature which improves the accuracy and prognostic value of HG in invasive ductal carcinoma. It is particularly useful in segregating HG2 tumors into low and high genomic grade (GG1 and GG3). In the current study we evaluated the ability of GGI to grade ILC, and hypothesized that GGI would have prognostic value in ILC. Methods: A consecutive series of tumors diagnosed at Institut Jules Bordet, Brussels between 1995 and 2005 as early stage ILC was selected. Gene expression data were generated from frozen tumor samples using Affymetrix U133 Plus 2.0 arrays. GGI was calculated using the Ipsogen MapQuant Dx protocol, which defines tumors as GG1 or GG3; non classified cases are reported as UD (Undetermined). Invasive disease free survival (IDFS) was defined as the interval between the date of breast surgery and the date of any invasive recurrence or death.Results: Gene expression profiles and clinicopathological information were obtained for 118 ILC cases (103 classic ILC and 15 PILC). In the subset of classic ILC, the HG1, HG2 and HG3 frequencies were 17% (n=18) , 81% (n=83) and 2% (n=2). GGI classified 89% of HG1 tumors as GG1 (n=16) and 11% as GG3 (n=2). 71% of the 83 HG2 tumors were reclassified as GG1 (n=59), 13% as GG3 (n=11) and 16% as UD (n=13). In total 72% of pts were GG1 (n=75), 14% UD (n=14) and 14% of GG3 (n=14). In the subset of PILC (n=15), 13 tumors were classified as HG2 (87%) and 2 tumors as HG3 (13%). GGI reclassified the HG2 tumors into 38.5% GG1 (n=5), 23% GG3 (n=3) and 38.5% UD (n=5). In the subset of N0 patients (n=57) GGI was a prognostic factor for IDFS (GG1 vs GG3; HR = 0.24; 95% CI 0.06-0.95; p = 0.03). Conclusions: GGI reclassified 83% of ILC tumors into low or high grade. In the HG2 subgroup, 81% of tumors were reclassified. We demonstrate for the first time the prognostic value of genomic grade in node-negative ILC. Results from the extension phase of our study with samples from additional centers will be presented at the meeting.

cathmg,  I sincerely hope your onc is right about that!!!  The only thing my oncologist has ever said to me about PILC is that it would be affected by the AC. He was right about that.   

Toni_S,  I think your pathology report would say something about pleomorphic variant.  Mine said, "...with features of pleomorphic lobular carcinoma."  If it doesn't say that it is a particular variant then it's probably classical ILC.  You could ask your doctor, of course, to look at your pathology report and give his opinion, or call the pathologist directly.  I know what you mean about having so much information to process.  

Hello Pam1,  Welcome.  I'm glad you found this site, too.  Hope everything is going better with all the fluid after your bilateral mast.  I read that you will be seeing your oncologist June 2.  Hope that goes well for you.  We pleomorphics are unusual.  I remember feeling a bit different than everyone else and was glad to meet others who had this, too, so we could support each other.  There are lots of nice people here.  Hugs, G.