ILC, HER2+++, 59yo, concerned yet hopeful

Hello ladies,

On May 4, I had a biopsy with a diagnosis of Invasive Ductal Carcinoma and was triple positive, ER 100%, PR 70%, and HER2 +3.  My surgeon and I had discussed Herceptin, chemo and what likely lay ahead.

On June 4 I had a lumpectomy. 3 nodes removed, all clear which was great. Two weeks later, my surgeon spoke with me about a port, what that would entail, and checked that I had made my oncologist appointment. Healing was going well, I was ready...

On June 29, I met with my new oncologist and, like so many of you, my world began to spin!--

First came the new diagnosis from the surgical pathology report: Invasive Lobular Carcinoma with some Lobular Carcinoma in Situ; tumor was now 0.6cm; Grade 2 (6/9); T1b, N0, M0 and since "HER2 is of minimal concern, I am recommending we put you on Tamoxifen for 5 years and do the standard dose of radiation".

I didn't know where to begin.  HER2 minimal concern?  Tumor is too small to do anything but Tamoxifen?  If you were closer to 50 rather than 60, we would assume more years so we might be more aggressive in our treatment.  And so on... I couldn't think, couldn't come up with the questions, knew I should be relieved but it didn't fit somehow.

I listened, I questioned the new diagnosis, my fears of HER2 and the need for Herceptin ("not effective with tumors as small as yours and your age").  My friend was delighted to hear I was saved from chemo treatments by a pill for 5 years!  But the uneasy feeling would not leave the pit of my stomach! 

Called my surgeon who was surprised also and said she would check with the oncologist. Afterwards, she called apologizing saying she had misunderstood and thought standard treatment for HER2 involved chemo and Herceptin no matter what the tumor size, but it appeared the evidence to support that wasn't there.  She asked me to try him one more time, go in and explain my concerns and ask questions, because he thought I was ok with the Hormone Therapy. She did admit that they had not had a case such as mine with ILC, ER/PR positive and HER2 positive with such a small tumor so things were new and I was more or less a data point.

I searched for a second opinion at the larger hospitals in one of our closest main cities only to find that just about everyone here works there too and they confer with one another.  So, I contacted Mayo Clinic!  It may be a long drive, but I need fresh eyes and open minds.  I am almost six weeks out now from surgery but I am more concerned about not starting with the correct first step no matter what.

If Mayo says my oncologist is correct with all their expertise, at least I can come back with a more peaceful frame of mind and take Tamoxifen, knowing I went the extra mile to find the best solution for me. 

The sad part we all know: Getting diagnosed is difficult enough.  But having to decide what treatment is best when your life may depend on it? Only those who have walked this path truly understand the toll it takes on you mentally, physically and emotionally!  Thanks for "listening".