Initial Screenings for ILC - fearing lack of proper treatment

Hi everyone,

I was diagnosed with Invasive Lobular cancer mid-April this year. I have two larger tumors in my right breast, the largest being about 3 cm x 5cm at first diagnosis. Both tumors had high ki67 rates: 44% and 39%. I was started on Femara. A few weeks later a digital mammogram found two more tumors in the other breast. They were around 1 cm, and had low ki67 scores.

The only screenings I've had have been two rounds of biopsies on the right breast and one on the left with Ultrasounds and the one Digital mammogram. My surgeon and Oncologist want to do a 6 month Femara only treatment then a double mastectomy. I was told all I needed were ultrasounds to check the tumor's size about every 6 weeks.

At my last visit, my Dr. didn't have my last imaging report. She felt my breast and stated she could hardly find the tumors. Well I still can, and have questioned whether they may be growing. I feel bumps in my armpit. When I asked to see the imaging report, she had computer problems. Since the waiting is driving me nuts, I stated I wanted surgery. So she sent me to the scheduler. The scheduler also gave me a copy of the report and it stated my largest tumor hadn't changed size from the previous imaging. Two other Dr's of mine who are supposed to receive all my reports failed to get a copy of this one.

Even so, the scheduler gave me dates that were still over 2 months out, making me wait the 6 months of a current clinical trial. I didn't consent, nor even qualify for this trial as I have bi-lateral cancer.

But I've had no breast MRI's, no body scans, no accurate lymph node checks, no chemo except for the Femara. Is this acceptable treatment for an aggressive bi-lateral lobular cancer? Especially when the Endocrine treatment doesn't work? I could have had mets when first diagnosed, as There was a specific spot in my lower abdomen where I constantly felt like I was being stabbed with a knife. It improved after the Femara, but still ..... The answer I've been given is that the Femara will kill any mets, so it doesn't matter if we find them or not.

Am I on the bargain basement treatment plan? My Surgeon is married to the CEO of my Health Insurance Co. I feel under treated with a cancer that metastasis so easily. Is this normally how stage 2 and possibly stage 3 lobular breast cancer treated? I'm very upset and scared right now.