Confused by report--is this ILC?

EClaire-I'm sorry that your joining us with an ILC diagnosis but you'll find lot's of good information here. Invasive mammary cancer includes multiple cancers including invasive ductal and invasive lobular carcinoma, as well as some more unusual types. I had my pathology done at 2 different centers and once it was referred to as invasive lobular carcinoma and once as invasive mammary carcinoma with lobular features. I think that the different terminology is just pathologist preference.

Hi E-Claire,

I know what you mean, the official guidelines don´t distinguish between ILC and ICD, but I think it is not because they think there is no difference but because they don´t yet know what they imply in terms of treatment! But especially in the US there are a handfull of researchers focussing on ILC.

I wouldn´t know of a good source right now, but have gathered some knowledge on the way...... First, they have to have a good look at your other breast, because there is a higher chance of lobular BC to occur in both breasts at the same time. (30%). It´s also often multifocal meaning there might be several little tumours. And they should use MRI for that, because it shows ILC best. As to treatment, neoadjuvant chemo often makes sense for ILC to shrink the tumour(s) and you will be able to see, whether chemo works or not. When looking for mets in staging, one should keep in mind, that lobular BC has a tendency to metastize in other places than IDC. I kept saying to my docs to have a good look at my ovaries and they said it was nonsense, I even wanted my ovaries out, like it´s often done in the US, but in Europe they have a very conservative approach to taking out "healthy" organs. Anyway, I ended up with large mets in my ovaries. But this is a very unusual place for first time mets, even for ILC, and of course I don´t want to say that every woman with ILC should have an ooph but at least doctors should be wanting to check the ovaries i.e. by MRI or CT at least once in a while during follow up.

The most important treatment for ILC is normally antihormonal therapy, in certain cases where there are several options, it might even be better to do Antihormonals rather than chemo.However, strangely, sometimes antihormonal treatment doesn´t work as well for ILC as one would expect. But I know that medical science is aware of this phenomenon and that they are doing research on that. 

Often ILC is slow growing, so a different approach has to be taken as compared to a fast growing cancer, but of course other types of BC can be slow growing too. That´s why, all in all, treatment is not that different, I think, however, follow-up should be more specified!

 All the best to you

Susaloh

With current medical knowledge it's not as important whether it lobular or ductal for treatment but rather the receptor status.  But that is just my opinion.

But when it comes to the question of future scans I would be very concerned if they just wanted to do mammos.  I would fight, kicking and screaming, that at the very least you would get alternating MRIs and mammos.  There is just too much risk that a future occurence may be lobular and that it would not be detected on a mammo.  I recommend having a discussion with your onc where you ask why wouldn't every future scan be an MRI.