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How many women on here have ILC breast cancer?— Edited -1/28/25 There is now a new ILC breast cancer group listed at the bottom of groups

A MyBCTeam Member asked a question 💭
Rochester, NY

Would you be interested in having a new group added here for those with ILC?

ILC breast cancer is separate from other breast cancers.
We need to be aware of any new treatments.

September 26, 2025
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Answer Summary

Members enthusiastically supported creating a dedicated ILC breast cancer group, with many sharing that invasive lobular carcinoma is... Read more

Members enthusiastically supported creating a dedicated ILC breast cancer group, with many sharing that invasive lobular carcinoma is distinctly different from other breast cancers and notoriously difficult to detect on mammograms alone, with MRIs often being the only reliable imaging method. Several members described their personal ILC journeys, including mixed diagnoses with IDC, varied treatment paths involving lumpectomies, mastectomies, chemotherapy, radiation, and aromatase inhibitors, and the ongoing challenge of managing side effects like joint pain while balancing recurrence risk. A recurring theme was the critical need for more research, better detection methods, specialized information, and community connection among the estimated 15% of breast cancer patients with this subtype, with members celebrating when a moderator announced the new ILC group had gone live.

A MyBCTeam Member

I don’t belong to any groups but I think individual groups for all the different types of Breast cancer is beneficial to women especially new members who are just learning about their cancer. I think this site in general is the best for all information because it’s made of women who are going through it and in plain English .

September 26, 2025
A MyBCTeam Member

Definitely interested! Right breast ILC with LVI (focal). Unusual cells on left breast being watched. Last week on Good Morning America they were talking about the increase of ILC in the population. Not enough reseach … and more research needed

October 16, 2025
A MyBCTeam Member

I sent a suggestion to the MyBCTeam, suggesting a Group for Lobular Breast Cancer. They already have a group for Triple Negative, and Triple Positive- so this would not be a stretch. Let's see what happens- I'll let you know if I hear anything!
Hugs!

September 27, 2025
A MyBCTeam Member

I had ILC 10 years ago I had right sided lymph node removal and mastectomy I didn't have a lump it was found by accident I'm now 10yrs clear.

September 26, 2025
A MyBCTeam Member

@A MyBCTeam Member
@A MyBCTeam Member

Hi Joyce :
Both Jo and I both submitted this idea and have heard nothing back yet.

There has been no response yet from this site.

But there is a lot of interest in an ILC group as shown by the response in this feed.

This is really needed.

October 15, 2025 (edited)

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