Topic: Any triple negative ILC out there?

Sep 18, 2016 02:50AM SoutherMother wrote:

Welcome Purplegurll:,

Thanks for joining our rare group. I would be interest in knowing which immunotherapy treatment you are receiving? I am plugging along with bi-monthly Opdivo treatments. I have had some progression in my spine while on Opdivo but I have only been taking it since July. I am hoping to do a chemo as my tumor markers are spiking. Has your Oncologist mentioned chemo in combination with immunotherapy

Sep 18, 2016 10:27PM SoutherMother wrote:

Purplegurll,

I have heard Keytruda is better than Opdivo but don't have any research to back it up. Thank you for letting us know. We will be standing by, eagerly waiting to hear about your scans and how you are doing through all of this. Did you mention that you are taking any other chemo or drug with the Keytruda? I see the Xeloda is mentioned in your lists of treatments, but not sure if that is past or present.

JohnSmith, thank you again for your information. I am checking in on your FB page every week. A beacon of light for me.

I have a meeting with my Oncologist tomorrow to try and figure out if the Opdivo is working. I love that I don't have all the side effects of chemo.

Michelle

Oct 10, 2016 04:03AM Numb wrote:

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 !

Oct 11, 2016 12:52PM - edited Oct 11, 2016 12:54PM by Numb

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.

Oct 11, 2016 04:40PM Optimist52 wrote:

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

Oct 11, 2016 08:25PM SoutherMother wrote:

Thank you for your quick response(s). Bear with me as I am on pain meds and definitely not my normal self, After reading the information, I still don't feel like Triple negative PILC has been addressed. I see only one PILC mentioned in the study, and that was was not verified as a triple negative. Is my foggy brain missing something?

Oct 12, 2016 12:27PM - edited Apr 8, 2017 08:27AM by Moderators

I don't blame you for wanting to hold onto some hope. I am more guarded when you see 100% guarantee verbage. Then to add to it, you have to look at how many people were studied and does it actually pertain to your subtype. Triple Negative PILC is so rare and difficult to get a group together to study that it would surprise me to see that happen. I would never place my hope on a 100% guarantee with only one participant in my subtype. I don't think that qualifies me as a doubting thomas. I have learned you have to read the finer print.

Dx 9/2007, IDC, <1cm, Stage I, Grade 2, 0/4 nodes, ER+/PR+, HER2-Surgery 9/2/2007 Lumpectomy: Left; Lymph node removal: LeftChemotherapy 10/2/2007 Cytoxan (cyclophosphamide), Taxotere (docetaxel)Radiation Therapy 11/2/2007 BreastHormonal Therapy 3/2/2008 Arimidex (anastrozole)Dx 9/2014, ILC, Both breasts, 9/13 nodes, ER-/PR-, HER2-Chemotherapy 10/17/2014 ACChemotherapy 12/29/2014 Carboplatin (Paraplatin), Taxol (paclitaxel)Dx 3/2016, ILC, Stage IV, metastasized to bone, ER-/PR-, HER2-Surgery MastectomyRadiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall

Edited by Mods to clean up Edit/Delete links.

Oct 14, 2016 03:51PM SoutherMother wrote:

Numb,

Glad you can get hope from the abstract. It reminds me of something from the Bible, Matthew 17:20.

Michell

Apr 4, 2017 03:25PM anotherNYCGirl wrote:

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!

Jun 25, 2018 03:08AM Ginagia1 wrote:

I have Triple Negative polymorphic ILC.

Very rare.