Any triple negative ILC out there?

PILC here and just finished my treatment, I had AC+T and had 16 radiotherapy treatments, last one today.  Now I am feeling at a loose end as I cannot take any hormones to make sure this doesn't come back.  Of course there is no guarantee of anything I guess, just hope and pray.  Very interested in John Smith's efforts to enlighten us what is happening with ILC, particularly that PILC has a 100% 5-year survival rate - that is great news !

Southermother -   I read this yesterday morning on one of the links of the results from the First Symposium.  I would have to go back and try and find where I read it from.  I was very surprised as it said that there was a 100% guarantee on PILC not returning in the first 5 years. Someone else then commented that they thought PILC was more aggressive than Classic ILC, and I thought that too.   Give me a day or two to find this as I won't be at my computer for the next few hours.  Now it may not have been triple negatve, I can't remember specifically.

Hi Numb and Michelle,

This is the post from the thread 'Oncotype score for ILC'. I have put the relevant part in bold. There is a reference to one patient with HR (hormone receptor) negative PILC.
It almost seems too good to be true to have 100% 5 year survival but I'm going to go with it! When I had my first appointment with my MO last year she made me think I was on death's door so it's great to see this.
























Posted on: Oct 9, 2016 05:25PMReport this Post

Silicon Valley -, CA, USAJoined: Apr 2014Posts: 606

JohnSmith wrote:

As some know, the ESMO 2016 Oncology conference in Copenhagen, Denmark is happening this weekend.
[ESMO = European Society for Medical Oncology]
Dr. Hope Rugo, a well respected BC oncologist at UCSF tweeted (@hoperugo) a slide image from the presentation:
"Analysis of OncotypeDX recurrence score and its clinical implications in invasive lobular carcinomas of the breast".
Her comment was interesting: "Lobular cancers much less likely to have hi RS (2.2%). A group who can omit testing?"

Anyway, here's the Abstract: 148PD - "Analysis of Oncotype DX recurrence score and its clinical implications in invasive lobular carcinomas of the breast"

Background
The Oncotype DX breast cancer assay is increasingly being used to guide treatment decisions for patients with early stage, HR+, HER2- BC, regardless of the histologic subtype. The utility of the Oncotype DX in decision making for treatment of invasive lobular carcinoma (ILC) has not been investigated.

Methods
We performed a retrospective analysis of early stage breast cancer patients treated at Penn State Cancer Institute from 2001 to 2011 and identified 102 patients with ILC. We evaluated the clinicopathological features and compared the Recurrence Score (RS) distribution in this population to that reported by Genomic Heath for the ductal histology (Kruskal-Wallis test). Median follow-up was 4.5 years

Results
We found that the RS distribution for ILC differed significantly from that reported by Genomic Health (P < 0.0001). The vast majority of patients (97.8%) have low/intermediate RS and only 2.2% high RS whereas the RS distribution reported by Genomic Health is 54.2% for low RS, 20.6% for intermediate and 25.2% high RS. We also found a statistically significant difference in the RS distribution between pure ILC and pleomorphic ILC (P = 0.027). When using RS of 25 as cutoff for chemotherapy recommendation, 93.3% of ILC patients have RS ≤ 25 and would not be candidates for adjuvant chemotherapy. Most tumors were T1-T2 (93.5%) and 6.5% were T3. Most tumors (64.4%) were node negative, 21% had 1-3 lymph nodes positive and 14.4% had N2/N3 disease. All the pure ILC tumors were hormone positive and only one pleomorphic ILC tumor was HR negative. 5.8 % tumors were Her 2 +. The 5 yr. Disease free survival (DFS) for the entire cohort was 84.9% and 5 yr. overall survival (OS) was 91.4%. OS varies significantly by histologic subtype with 5 yr. OS being 100% for pleomorphic ILC, 92% for pure ILC and 73% for mixed subtypes.

Conclusions: The Oncotype DX RS distribution in invasive lobular carcinoma is unique, differing significantly from that in invasive ductal carcinoma. Majority of patients (97.8%) have low/intermediate RS and 93.3% have RS ≤ 25 and would not be candidates for adjuvant chemotherapy. The clinical usefulness and cost-effectiveness of the Oncotype DX in guiding treatment for ILC should be further investigated.

Authors: C. I. Truica, J. Felts, B. Han, J. Zhu (Penn State Milton S. Hershey Medical Center, USA)
Disclosure: All authors have declared no conflicts of interest.
Legal entity responsible for the study: Jesse Felts Cristina Truica
Funding: Pink Zone and Lady Lion Basketball Breast Cancer Research Endowment and the Federal US Work Study program

Hi Tinkerbells,

Like your sister, I was ILC er/pr+ first time around. You can read on my profile below that I had lumpectomy, chemo, rads, tamox, etc. Then er/pr- followed by dbx and another chemo.

I hope that her treatments are quick and easy!

I have Triple Negative polymorphic ILC.

Very rare.