Diagnostic process in the United States

Coming back to the United States, I knew my experience with the healthcare system would be different. I was fortunate that my mom had already made a consultation for me, so just a few days upon my return I was sitting in a breast specialist’s office with my mom. We both had no idea what to expect yet were eager for answers.

First, my doctor performed a standard breast exam and then reviewed the ultrasound images and test results that I brought back from Rwanda. As he reviewed the results, I sat in silence wondering if he would be able to tell me anything more than what I already knew. By this point, it had been a couple weeks of saying ‘probably cancer.’ It was hard to sit with that, not knowing what type or stage or possible treatment plan. I never thought I’d want a diagnosis but I was ready. I just wanted to move forward at this point and felt I had been living in limbo for long enough.

Instead of more clarity though, my doctor shared that he wanted me to go through the diagnostic process again for higher quality images and results. After my original biopsy resulted in large bruises and extreme soreness in a sensitive area, I wasn’t thrilled about this but certainly understood why. I promptly scheduled the ultrasound-guided biopsy but it was another one of those hurry up and wait moments. My doctor also advised that I get BRCA testing done, to see if there is a known genetic component to my cancer. This could impact treatment options, so we decided to get that blood test done immediately.

Ten days later, on a Thursday, I finally arrived at my early morning biopsy appointment. After changing into a hospital gown, I was led down the hallway to the third door on the left. As I entered, my eyes were drawn to the panels above the table with cloud images for patients to look at. I layed down as instructed and the tech explained each step as she went. 

First, the ultrasound to see the mass and then the biopsy. As she began the ultrasound, she immediately found the mass and continued to look around. As she went toward my armpit, I realized she was looking at my lymph nodes which was not something they did in Rwanda. She stayed there for a moment, and as I watched the screen I wondered what I was looking at. “We’ll be doing a lymph node biopsy as well,” she said softly. “Do you see something?” I replied all the while expecting her not to give me a straight answer without further consultation. Luckily, she did provide more information and it was crucial. 

One of my lymph nodes was clearly enlarged, something that I had not considered before. I had assumed I’d just need surgery and radiation, because of the size of the lump being so small. I had not mentally prepared myself for the prospect of chemotherapy but when asked, she said that I would likely need it. This was the first real piece of insight I received, and while it wasn’t news that I wanted, it was a step in the right direction with getting answers and mentally preparing for the journey ahead.

Approximately 7 years before this, one of my college roommates and closest friends was diagnosed with Leukemia. I witnessed the living hell that was her chemo and I wouldn’t wish that on anyone. She had 31 days of inpatient care and many complications over the course of her treatment. That was my only real reference point and while I knew at the time that every cancer is different, I didn’t know enough about different types of chemo to know if mine would be any easier. Remember, I didn’t even have an actual diagnosis yet.

As the tech continued, I was impressed that she was operating the ultrasound wand and machine with one hand while performing the biopsy with the other. Since my mass was mobile, I wondered why she didn’t need to hold it down forcefully like they did in Rwanda. With my arm lifted above my head, I hardly even felt the breast biopsy and I was pleasantly surprised. 

Before she moved onto the lymph node, she warned me that this would be more likely to bleed and we’d need to put strong pressure on it. I didn’t mind, as she so seamlessly performed the breast biopsy. I had, however, forgotten that I didn’t eat breakfast nor drink much water prior to the appointment. What would have been a seemingly simple biopsy turned into a hematoma and me nearly fainting when they tried to perform a mammogram immediately afterward. A bag of IV fluids, something they very rarely ever need to give in this setting, was just what I needed to recover from the situation. It was an unexpectedly eventful morning but in the end, we got what we needed.

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