I was dx'd w/invasive lobular--2.5 cm tumor 9 mos. after I had a supposed normal mammogram. I had bilateral mastectomy (one side prophyllactic) because of very bad family hx of breast cancer. Although I tested negative for the gene, I was told that all genes have not yet been identified and that there was still good chance there was genetic base.
In addition to invasive lobular, they found DCIS w/comedo necrosis and there was a separate tumor in the nipple with dermal lymphatics and was told that I may indicate that I also have inflammatory breast cancer and am considered in the "gray" area for that. There were 9 positive lymph nodes with lympho-vascular invasion. All margins were clear although distance from main tumor was .6 cm from deep margin. I was both ER and HER2+. Supposedly, only 5% of those w/invasive lobular are HER2+. After surgery, all scans were clear.
I have had 4 cycles of AC, then 5 weeks of radiation and then 4 cycles of a taxane (2 Taxol and then 2 Taxotere) along with weekly Herceptin which I will receive for a year. Tamosifen was originally recommended as the next step in treatment, although I've been told that an aromatase inhibitor would be an okay choice as well. My understanding is that latest research has shown that Tamoxifen is less? or not? effective in those who are HER2+ I have also read contradictory research about one of the aromatase inhibitors being effective in those who are HER2+ One report said it was effective and had a good response rate and another report on different research that said it wasn't. Both of those contradictory studies were done on Letrozole or Femara. I am wondering if I should even take hormonal therapy, and, if so, what to use--Tamoxifen or an aromatase inhibitor, and if the latter, which one?