Hello @mjay Amanda the Connect Coordinator referenced me in her comment. My name is Cindy and I too have Invasive Lobular Breast Cancer, Stage 1. There aren't so many of us Lobular folks out there, so feel free to reach out to me, I'm happy to share and support in any way I can. About my cancer - I started with LCIS 7 years ago and then invasive 5 years ago. I opted for a bi lateral mastectomy because my LCIS was on the right breast and the invasive on the left. Since both breasts were involved, it was the right choice for me. I was unable to take the aromatase drugs but here I am at five years and counting and hopeful. I truly believe it's important to ask your doctors to check your estrogen and progesterone levels. They don't seem to do that automatically so you might have to press a little but I found that my estrogen levels were so low (without meds) that gave me some peace of mind. I was also tested with CEA turmor marker tests, which were negative, in the first year following my surgery (not prior to the mastectomy) but that is a possible test. It's not entirely reliable...you might get a low test and still have cancer and you might have a high level and not have cancer. It's just one tool oncologists might use. It's a simple blood test and not expensive, so you might ask about it as well.
My husband has a Stage IV cancer of unknown primary (they don't know the actual cancer type). He is working on year four now and is in treatment (radiation and chemo, off and on). He gets the CEA test every 3 months as well as a PET scan. His cancer is advanced and for him this blood test is very helpful because his cancer comes and goes with treatment and sometimes simply on it's own...it may appear and then receed randomly. A normal CEA is in the low numbers - like .02 - 4 etc....his test results have been at their lowest in the 200's and at their highest in the thousands. For him the blood test shows that the cancer continues to circulate in his system. The downside of the CEA is that it can be elevated by things like lung disease (COPD, colds) etc and other factors but it can also signal cancer.

I hope this helps a little. You should continue to be vigilant with your doctors, asking for whatever tests and support will help you cope with your cancer diagnosis. I think peace of mind and knowing you're doing all you can to manage your cancer and stay healthy is very important. Press your doctors for all the support you need.

Hugs,

CIndy

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