Frustration

JudyO

I try to do research about ILC but it is so limited...I get frustrated. It is worse than ILC and more often recurs after 7 years. That makes me believe the online calculators are not for us (predict and Lifemath). I have read people questioning onco type testing for ILC (saw new lobsig). I am PR - and that really has no research other than it is very bad. I see arimidex better for ILC but how much and for who...I see chemo doesn’t work as well but for who does it work..

trinigirl50

https://lobularbreastcancer.org/

Check out that website for info on ILC. It isn't any worse than IDC, in general reocurrence is not any more or less likely. It is usually a less aggressive type of cancer. But that unfortunately means there is more likelihood of LATE reoccurrence than IDC. It "appears" to have worse prognosis because it is often caught at later stage than IDC. Due to the tumour formation (in threads rather than solid lump) it can be invisible on all diagnostic scans, hence later stage diagnosis.

It can metastasize to differing sites than IDC: ovaries, peritoneum, eyes, as well as bones, lungs, liver and brain (as per IDC). It is generally more multi focal. Although it has been said that it is more likely to be bilateral, this has not been proven.

PR-, usually means a more aggressive cancer, where the likelihood of early reoccurrence (before 10 years) is higher. ER+ pr+ cancers have the highest likelihood of late reoccurrence (after 10 years). If you have already passed 10 years in that particular instance PR- is a plus. PR- usually does not reoccur after 10 years.

Chemo does work for some ILC cancers (many women have completely path response as you can see in ILC thread topics discussed.) PR- ILC in particular, should benefit more from chemo as PR- usually means more aggressive and higher proliferation. Chemo works best on those types.

According to very large study, ILC does significantly better on AIs than Tamoxifen.

Yes there is a long way to go on ILC. Oncotype probably is not the best tool and hopefully LobSig will soon be available for public use.

ILC is finally getting some attention.

A lot of your questions are discussed on various threads in the ILC forum. You just have to wade through them.

Just to he clear, I am not a medical expert, all the info I have has come from my own research. I dont read newspaper articles but I research articles on scientific and medical sites.

trinigirl50

https://lobularbreastcancer.org/

Moderators

Hello, Judy! On the following pages of the main Breastcancer.org site you can learn more about diagnosis and treatment of invasive lobular carcinoma:

Invasive Lobular Carcinoma: Symptoms, Diagnosis, and More

Hope this helps!

The Mods

momand2kids

Hi there-

so sorry you are so frustrated-- I just wanted to check in --I was ILC- I am 11 years out--- feel great-- not sure what the future holds but for now I assume I am healthy!!!! Research is helpful and it is good for us to know what is happening- you may want to talk to your onc- or the Lobular Alliance.... they might have some additional information. Hopefully that will help you ... all the best

momand2kids

Judy,

I should add I had 4 rounds of chemo and was on letrozole for 5 years (along with lupron for 3 as I was pre-meno).... chemo was based on my oncotype which was in the intermediate range at the time....