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

Posted by mjay @mjay, Jul 28, 2022

Since lobular breast cancer is only 10-15% of all breast cancer diagnoses and now understood to be a unique subset of breast cancer as a whole with different characteristics than ductal breast cancer necessitating different treatments and inherently different risks, I would like to see a separate category under the breast cancer forum so that the most appropriate info is being disseminated for this specific subset of BC. Just a thought.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

@alibee

That was my path as well, straight to the lumpectomy. I had 5 days of targeted radiation after that and now I’m on the aromatase inhibitor, Letrozole, which I’ve tolerated really well. The whole process takes some time, start to finish which surprised me. Next week I have my one year follow up and can ask the questions I have about our specific BC.

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Wishing you the best next week!

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@alibee

That was my path as well, straight to the lumpectomy. I had 5 days of targeted radiation after that and now I’m on the aromatase inhibitor, Letrozole, which I’ve tolerated really well. The whole process takes some time, start to finish which surprised me. Next week I have my one year follow up and can ask the questions I have about our specific BC.

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Yes, that’s what they’re suggesting for me. Thanks for mentioning Letrozole. One thing at a time but I’m not looking forward to taking something. However, I realize that I have no choice (to discourage reoccurrence) and I’m grateful to have it caught early. I guess I have to heal before the radiation part.

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@marshgirl24

Thanks so much! I am reading past posts now to learn more. My lumpectomy was last week and next week I have an appointment with a medical oncologist. I’m beginning to wonder why my dr went directly to a surgeon. Just need to learn more about this lobular diagnosis. Thx for suggesting that Alliance.

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That was my path as well, straight to the lumpectomy. I had 5 days of targeted radiation after that and now I’m on the aromatase inhibitor, Letrozole, which I’ve tolerated really well. The whole process takes some time, start to finish which surprised me. Next week I have my one year follow up and can ask the questions I have about our specific BC.

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Thanks so much! I am reading past posts now to learn more. My lumpectomy was last week and next week I have an appointment with a medical oncologist. I’m beginning to wonder why my dr went directly to a surgeon. Just need to learn more about this lobular diagnosis. Thx for suggesting that Alliance.

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@marshgirl24

Hi, I'm newly-diagnosed and interested in following this lobular subgroup and wonder if you are still active?

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Hello, and I’m very sorry to hear about your diagnosis. I’m about a year and a half past my diagnosis and doing well. As far as I know, this subgroup is still active. If you look back at previous posts, you might find some answers to questions you have. Another resource that’s helped inform me is the Lobular Breast Cancer Alliance. Wishing you all the best!

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Hi, I'm newly-diagnosed and interested in following this lobular subgroup and wonder if you are still active?

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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

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@cedar75

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

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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.

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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

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@kstar077

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

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The dye is called DOTAREM.

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