Life with metastatic breast cancer is exhausting, overwhelming, being hyper-vigilant, and paranoid. It is also amazing, joyful, hopeful and inspiring. I had all the feels yesterday! It was my date with a doctor at the University of Michigan. I wanted, no, needed to hear from an expert in the breast cancer field that I am on the right path. I really needed verification that I am doing all I can do to THRIVE with cancer. I am in charge of my care. I am the expert of ME.
I have been having breast changes on the side that had the initial tumor so I have been worried and anxious. My regular oncologist told me not to worry that we would watch it. Right now I am NEAD. I want to stay NEAD for as long as possible. Therefore, after having lunch with some AMAZING stage four ladies who all go to U of M, I decided to make an appointment. A few weeks later my day had come. Holy moly was I anxious. What if they find something? What if I am not articulate about why I came to see them? What if they FIND something??? Okay a few deep breaths.....faith not fear!
The appointment went great. I met with two wonderful doctors. They listened to all my questions and validated that my questions were appropriate, relevant and something that could be presented at a fellowship meeting. I felt extremely proud that I did the research and knew my shit! After a manual exam they both felt that the breast changes are a thickening in the shelf that hold the breast tissue and some lymphedema of the breast. Who knew you could get lymphedema of the breast. Something else I will be researching. Whew!! I think my shoulders came down from living next to my ears. I had been so stressed.
I also heard words such as exceptional responder. I LOVE those words. There were a few changes the doctors suggested such as switching from tamoxifen to an aromatase inhibitor, like letrozole, a medication change to have my xgeva shot every 6 weeks vs. 4 weeks so it can coincide with my infusions; this will result in 1 less appointment each month (WAHOO) and the dreaded brain MRI. I am not having any symptoms of mets to the brain. But HER2+ cancer likes the brain. It is one of the places in can migrate too and most chemo drugs do not pass through the blood brain barrier. A baseline MRI is good practice because if there are small spots they can be radiated and be taken care of easier when they are smaller. I have faith that my brain is perfect. I visualize a healthy brain. Faith not Fear. We also had The Talk. To remove the breast or to not to remove the breast, that is the question. In some of my stage 4 FB groups women have talked about having their breast removed to reduce the tumor load, hoping to help the body's immune response. (If I had the brca genes the story would be different.) I researched articles, but there is not enough evidence to support surgery for stage 4 MBC; but I still needed to have this conversation. The oncologist said with my complete response there is nothing to remove and that surgery at this time was not necessary. If there is re-occurrence in the breast only, we can revisit this conversation. I am at peace with decision. I really do not want more surgery but I would do whatever it takes to be here as long as possible.
The day ended happily. I will continue to have my care managed locally and know that U of M is in my back pocket for progression. Now I have to put my big girl pants on and talk to my local oncologist to implement these changes. Of course, the best way to end the day is a date with my husband. Two dates in one day! I was desperately seeking answers, now I feel so much relief from the awesome news that my breast changes are not another tumor. Joy is dinner with my love and sangria.