@A MyBCTeam Member

Plus, Letrozole supposedly works better for ILC.

I read that someplace but do not have a link for it now…Will post when I find it again.

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A MyBCTea...

Thank you

usually a slower grower, the biggest difference between the 2 main types of our b.c.'s can be said in 1 word -*** e-cadherin***; a protein encoded by the cdh1 gene - it causes a loss of adhesion in the cancer cells. -so rather than sticking together to form a clump like iDc, they lose their sticky - and form in flat lines, and/or line up in single file sheets. -this trait makes them nearly impossible to be found on normal scans lessening the chance of catching it early - contrast mri is the gold standard for finding these cells that have lost their glue

there are other types of cancer caused by the same mutations as our lobular carcinoma, and when we have spread, ours tend to travel to this areas vs where ductal spread is more prevalent

as sue10 offered, there are numerous groups and while admittedly ilc was lumped [sorry for lack of better wording] in with idc 10% - 90% - this is being fixed.

here's what we STILL need for lobs....1. a much more advanced screening protocol withOUT the invasive contraindications of accruing gad with frequent contrast mris. 2. since lob is a totally unique cancer in the way it grows, using the same treatment methods for ductal has been found to often be ineffective on lob. - this is changing as well.

the lob groups are on it - unfortunately our numbers are growing too as b.c. rates continue to climb - but to make a bad pun, there has been much lobbying for lobular and advocacy for better scanning and treatment for this unique b.c. is in the works - there are many new podcasts and symposiums on the topic

I am very glad they are there and it is horrible that the head of the ILC sister passed away and there is no one with the needed knowledge to take over. I’m going to speak to MD Anderson to see if there are groups since they treat ILC. i’m also going to try and get in touch with Sloan-Kettering to see what they have in relation to groups and maybe be a part of needed studies for ILC

Hi @A MyBCTeam Member

There is a National ILC group,
Lobular Breast Cancer Alliance, online.

Also, 2 groups on Facebook.
I signed up for them but never seem to check them. Is this one of the groups that you were mentioning?

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A MyBCTea...