[agness]

Last year I was diagnosed as stage 3B with a left-sided breast tumor, mets to the left axilla and an affected internal mammary node behind my breast bone. I took neoadjuvant TCHP from 3/14-07/14 and had a pathologically complete response to treatment in August 2014 (lumpectomy and SND). I did proton therapy to the left chest wall from 10/21/14-12/9/14 and continued on 16 doses of herceptin finishing on 1/28/15 of this year.

Last week I was diagnosed with metastatic breast cancer (HER2) to my cerebellum with a 3.5x5 cm lesion that was well differentiated and not well vascularized. Evidently the amount of edema I was experiencing, which was completely overlooked by my primary care doctor, radiation oncologist and medical oncologist over the past months, could have killed me in my sleep.

A bone scan yesterday revealed minor metastatic disease to my lower ribs (both sides) and opposite sternum. I will undergo a PET scan on Monday for further diagnostics.

From everything I have read the risk of HER2 metastasizing to the brain actually is a known risk, especially concurrent to a pathologically complete response to TCHP. This was never discussed with me, even though I had progressive symptoms of ataxia, dzziness, occipital neuralgia and vomiting.

I have been actively reading up on how we can use targeted therapies both systemically and in the central nervous system to try to combat this. We know that my HER2 cell line did respond to the targeted therapies systemically -- but my central nervous system appears to have functioned as a reservoir.

Right now I'm to heal for 4-6 weeks before undergoing something like gamma knife to the tumor bed. I am keen to take advantage of the radiation increasing my blood-brain permeability to targeted therapies during that time -- though I have to get my team on board. It seems to me that if we throw more at it sooner then we might actually gain some ground on this disease.