Lobular Breast Cancer: Let's share and support each other

Thanks for sharing as my tech didn’t mention the flush at my Breast MRI last month!

I, too, had good results with this cancer--radiation with zero ill effects. Took Letrozole for 5 years and am doing great. I wish you the same good luck.

I wonder how this will differ from or add to the recommendations just published here: (https://www.uspreventiveservicestaskforce.org/uspstf/recommendation/breast-cancer-screening#bcei-recommendation-title-area). These recommendations seem to decrease the frequency of mammogram and discourage use of MRI. Am I reading that wrong? It's a losing battle to get anything more than the lousy mammo that apparently missed my cancer for probably a few years, though religiously obtained them. No source of consolation for me 🙁 .

When it comes to the Find It Early Act, I would love to know what qualifies a person for additional screening such as MRI. Seems to me there will be all sorts of caveats one must meet and those, like me, with early stage ILC and smallish tumor will be SOL. Not optimistic any of this will help those with true early stage.

Thanks for sharing that link but it definitely is challenged by most radiologists and can be read in their trade journals the importance of MRI's for dense breasts. I just hope oncologists understand how we feel - early detection is all we have!

Just spoke with my breast surgeon and she said they no longer use that type of dye.

Rely what dye do they use of it isn't gadilinium. Anyway, they flush after the mri now! Cheers...keep on top of everything they do to us cancer survivors. We have to be our own advocates. What dye is your place using. Mine is still using gadilinium and said that is the o ly one available. What's yours and I will tell them. Thanks

The dye is called DOTAREM.

Dotarem is gatoterade meglumine A member of the gallolidium family. It has been shown to be less toxic but has similar side effects. There are many gallolidium types used as radioactive dyes

I'm having a BRAIN MRI and it was explained that the DOTAREM is much less of an issue in the brain as far as accumulation goes.

This just out . . . Report from ESMO breast cancer 2024
Exemastane plus ovarian suppression shows benefit for ILC in premenopausal women.
Maybe something to discuss with your oncologist?

Below is the abstract from a presentation at the ESMO conference 2024. It uses a primary endpoint of breast cancer free interval (BCFI) - which I like better than OS, overall survival, because I’m interested in how long it will be before a recurrence might happen, OS doesn’t tell us that.

109O - Adjuvant endocrine therapy for premenopausal invasive lobular carcinoma (ILC): Results from SOFT and TEXT phase III studies (ID 133)

Lecture Time 17:41 - 17:53
Speakers
* Otto Metzger (Boston, United States of America)
Authors
* Otto Metzger (Boston, United States of America) Yue Ren (Boston, United States of America) Jens Huober (St. Gallen, Switzerland) Rosita Kammler (Bern, Switzerland) Patrizia Dell'Orto (Milano, Italy) Leila Russo (Milan, Italy) Gini F. Fleming (Chicago, United States of America) Prudence A. Francis (Melbourne, Australia) Olivia Pagani (Rennaz, Switzerland) Barbara A. Walley (Calgary, Canada) Sherene Loi (Melbourne, Australia) Marco A. Colleoni (Milan, Italy) Beat J. Thuerlimann (Zürich, Switzerland) Giuseppe Viale (Milan, Italy) Meredith M. Regan (Boston, United States of America)

Abstract
Background
Data from BIG1-98 along with pre-clinical findings point to a partial resistance to tamoxifen (T) among postmenopausal women diagnosed with ILC.

Methods
The TEXT and SOFT trials assigned premenopausal women with hormone receptor-positive (ER+) tumors to exemestane plus ovarian function suppression (E+OFS) or T + OFS, or to T alone in SOFT only. This analysis includes centrally reviewed ER+HER2-negative tumors (n=4115) classified as invasive ductal carcinoma (IDC), (n=3370) or ILC (n=345). Cox model analyses stratified by trial and chemotherapy use included histological subtype, treatment, and interaction term. A pre-specified level of significance P-interaction< 0.2 was selected to retain statistical power (>80%). The analyses were adjusted by age, tumor size, nodal status, and centrally assessed Ki67 to define Luminal A-like (LA), (Ki67 < 14%) and LB-like tumors (Ki67 ≥ 14%). The primary endpoint was breast cancer free interval (BCFI).

Results
At 12-yr of median follow-up in the SOFT trial, E+OFS showed a larger treatment benefit over T in ILC (HR=0.32; 95%CI 0.12-0.91) than in IDC (HR=0.71; 95%CI 0.54-0.93), Pinteraction=0.15. Differences were less marked for T+OFS vs. T, ILC (HR=0.66 95%CI 0.31-1.42) and IDC HR=0.81 95%CI 0.63-1.05), Pinteraction=0.62. In SOFT+TEXT at 13-yrs, E+OFS vs. T+OFS consistently benefited ILC (HR=0.60 95%CI 0.31-1.15) and IDC (HR=0.70 [95%CI 0.58-0.85), Pinteraction=0.65. The table below (not included here) shows consistent benefit E+OFS vs T or T+OFS for both LA and LB-like ILC tumors. In contrast LB-like IDC benefitted more from E+OFS vs. T+OFS, with LA-like IDC showing a much smaller benefit.

Conclusions
The benefits favoring OFS+E appeared to be greater for ILC when compared to IDC, overall and consistent within subgroups of LA- and LB-like tumors defined by Ki-67. E+OFS stands out as the most effective treatment for ILC.

Clinical trial identification
NCT00066690; NCT00066703.

Legal entity responsible for the study
International Breast Cancer Study Group, a division of ETOP IBCSG PartnersFoundation, sponsored the SOFT and TEXT clinical trials.

E - Exemestane, an aromatase inhibitor
OFS- Ovarian function suppression
T - Tamoxifen
LA - luminal A
LB - luminal B