Just diagnosed 04/03/16

Hi Michelle,

Sorry you had to join this group. My wife had a very similar diagnosis.

I assume you are in New Mexico?

When I saw that you were just diagnosed, my initial thought was to suggest seeking treatment at the University of Pittsburgh in Pennsylvania since they have the only research team in the US that is studying Lobular. They are conducting the first ever and only US-based ILC clinical trial (which I wrote about here). It's specifically for "newly diagnosed" patients like yourself who haven't had surgery yet. The 3-4 week clinical trial is designed to determine treatment response by testing a few different common breast cancer therapies to identify areas of Lobular drug resistance. Drug resistance is a bit of a challenge and ILC is a chronically understudied, poorly understood subtype that warrants different targeted treatment. The trial hopes to answer some fundamental questions, which are needed to change treatment guidelines that will ultimately improve survival for all ILC patients.

Hope this makes sense. Feel free to ask questions.

Just a little difference of opinion. You might but will not necessarily be offered an MRI unless you have dense breast tissue &/or your surgeon suspects more areas. You should also ask the surgeon whether (s)he specializes in breast cancer and if so, how many of each type of breast surgery (s)he has done and does. You should ask what grade and the hormone & HER2 status of your tumor are, based on your biopsy path report. (It, as well as size, could change in the post-op report). As to OncotypeDX, it's way too soon to ask. It needs to be done on tumor tissue removed from your surgery, because: that pathology is more definitive than initial biopsy tissue; you need to know your lymph node status, which is usually determined by sentinel-node biopsy, because it isn't ordered in women with 3 or more positive nodes (until recently, test-eligible women had to be node-negative); and generally limited to IDC (another version is for DCIS). ILC because of its shape and growth pattern tends to be bigger than IDC (so don't panic over the size), and it's tougher to get clean margins in ILC with a lumpectomy, which is why mastectomy might be recommended. You might also ask what your reconstruction options are--whether to see a plastic surgeon and if (s)he will be in the OR during your mastectomy or lumpectomy, and if for symmetry's sake your healthy breast will need any modification.