Today, I undertook the appointments with a mixture of apprehension, frustration, and hope. The stakes are always high and every consultation feels like navigating a labyrinth, especially when you are hoping for answers that you can't find. This day was no different. My appointment with the Surgical Oncologist was pivotal. We wanted answers, clarity, and a way forward.
Surgical Oncologist
The consultation began with a deep dive into my medical history and recent scans. The surgical oncologist’s words resonated in the sterile room, “Without a primary tumor, there’s no need for a mastectomy. It’s optional.” "We aren't sure where it started." The news was both a relief and a source of confusion. How could the cancer exist without a primary source? We knew it had to come from somewhere. Despite their best efforts, all the many doctors, biopsies, prods, and pokes on me had left us unable to locate it.
We had traveled all this way in hopes to maybe find where it all started from.
We left that meeting feeling just as confused as we were when we got here, except now we new the surgery was optional. I am not sure if that left me feeling better or worse. I wanted some direct answer that said what I needed to do rather than this, we aren't sure and it is up to you because we don't really see a reason.
Oncologist
We had a short break to get lunch and then headed back to the facility. We went in hoping to get more answers when we met with the Oncologist. On the positive, she was in agreement with my current Oncologist at home for the type of chemotherapy, surgical, and radiation track. I felt safe to at least be taking the chemotherapy I was on and the way I was taking it. She echoed the same perplexing sentiment - they really had little answers.
I brought up the fluid (effusion) around my heart and lung, expressing my desire to have biopsies done. I knew they hadn't scheduled these tests and it was as if the information hadn't reached them in time. I shared my concerns, but it became evident that they weren't going to do anything. However, they were curios, and were eager to get my results once I followed up on it when I got home.
The main mystery!
The source or origin of my breast cancer remained a mystery. However, they offered an intriguing hypothesis: at some point, cancer might have developed in my breast. My immune system, in a valiant effort, attacked it and seemingly did its job. The cancer, then subdued, retreated into the lymph node and lay dormant.
This theory, though comforting, left me pondering. I couldn’t help but think back to my car accident – the bump, the activation of my lymph system. Was this the catalyst? Did that accident awaken a dormant threat within me? The questions swirled around, unanswered but persistent.
Did this happen to other women, but we don't hear about it because by the time we find out they are dead?
I felt like my whirlwind at MD Anderson may have been for nothing. The only thing I could think after another long mental day was a sense of relief at not needing an invasive surgery, confusion over the elusive nature of the cancer, and a lingering hope that the answers would eventually surface. Amidst the uncertainty, one thing was clear – the fight continues, and every day brings us a step closer to understanding and overcoming.
Yesterday was proof that navigating cancer is as much about the emotional and mental journey as it is about the physical one. Today felt more frustrating. I had this long journey hoping to get answers, but leaving with more questions. The further we got into this cancer the more confusing it seemed to be.
I will say the impressive group of female doctors at the MD Anderson Breast Cancer Center is fantastic. Each doctor was smart and caring. If only the facility was closer. It was making me think more and more about the Vanderbilt location that was only a few hours away from me. The more I was learning about the Cancer of Unknown Primary - the more I was realizing I needed a Specialist Group that could handle it or at least a skilled breast surgeon to handle the surgery option I was or was not considering.
At this point, I was confused and tired and confused!
My mind is Building a Mystery by Sarah McLachlin.
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