Lulu’s Fight: This is my journey through cancer

Before cancer, I was a healthy, high-achieving woman with a Ph.D. in Management. I exercised regularly and mostly watched what I ate. I had been married 5 years and my husband, Marc, and I were making decisions following a not-so-successful fertility journey regarding how we’d most like to add to our two teenage sons from my husband’s previous marriage. I was enjoying a new job, meeting exercise goals (I had run two half marathons and finally hit a sub-30 minute 5k), and Marc and I had had an incredible fall 2018 traveling and enjoying time together before giving fertility efforts one last attempt in hopes of a biological baby (or two). 

I had recently turned 40 and was proud of myself for having my first mammogram and going the extra mile to choose the 3-D option. When my primary care doctor called a few days later to let me know I needed to go back for a diagnostic follow up because I had ‘dense tissue’, I wasn’t concerned. I had been cautioned that this was the norm for our family. Sure enough, they were right. After the return trip to the imaging center, I was in the clear. Nothing of concern. In my left breast, there were a few calcifications we would keep an eye on with another mammogram in six months and in my right breast, there were a few seemingly benign cysts, of the fibrocystic nature. No biggie. It was late October 2018, and I had a ‘clear’ mammogram. I marked my calendar for the April 2019 follow up. I knew I should probably cut back on coffee and for a few weeks, made a valiant effort to limit my intake to two cups a day. 

Two weeks later (mid-November 2018), I started having a deep pain in my left breast. My husband is a sonographer (aka, an ultrasound tech) and I complained about my breast hurting. Marc hypothesized maybe the process of the mammogram had popped a blood vessel, causing a small pooling of blood. This explained the deep pain and was our working hypothesis. While rare, it is possible. He also strongly encouraged me to get it checked out if I felt there was really something wrong. By this point, we were nearing the end of the semester and my coffee intake had resumed to its normal excess. I decided to wait until Christmas break to see how it felt. 

December 14th was a most certainly stressful day, getting out of town for Christmas with part of my family, working a full day and driving the four hours home to Nashville. When we got there, I was tired, my left breast was really bothering me and I felt run down and a little feverish. Marc and I were getting ready for bed when I noticed my left breast was red and swollen, and for the first time I felt a golf ball sized lump. The next morning I texted my primary care physician, who is a good friend. “I know the chances of this being something really bad are small because I JUST had a clear mammogram, but something’s going on and I need to see you Monday.” She replied, “I understand. Call the office when we open, and I’ll make sure you get in.” I texted her later that day that both my mom and my sister felt like it was mastitis so I thought I probably just needed some antibiotics. I googled mastitis, and while rare for a non-lactating woman to get it, it is possible. Awesome. I can’t get pregnant but I can get mastitis. Oh, and I forgot to mention, I had shingles in October. Great. I am too young for shingles, but I can get that, too. Go figure.

By Monday at 9:00 a.m., I was laying on the exam table in my (friend and) PCP’s office. She began her exam and immediately said, “Laura, I don’t want to scare you but this isn’t a golf ball. It’s a grapefruit. Let’s get you in for a biopsy.” The surgeon she wanted to do the biopsy was out of the office that day but could see me the next day. He wanted me to get an ultrasound, so I drove to another town nearby where they could fit me in at an Imaging Center that day for another diagnostic ultrasound.

Here’s where my story fits what typically goes wrong for IBC. I arrived to get an ultrasound of my left breast. Remember, my husband is an ultrasound tech. Also remember, I had a breast ultrasound as part of a diagnostic follow up about seven weeks prior. I know how this is supposed to feel. I expected the room would be dark, and it was. While that’s not normally a problem, it is when the first clue of IBC is a red breast. Something you can’t see in the dark.

I could also tell the sonographer wasn’t really sure of what she was doing as she changed probes three times. It seemed a little too fast for what I remembered back in October. She went back to the radiologist to discuss her findings, which I knew was a normal protocol. When she came back, she wished me luck and sent me on my way. 

In my gut, I knew it wasn’t right. I walked back to the car, texted my doctor that I was done, and then walked back inside and asked for a copy of the exam. By the time I got home, I had heard from my doctor who had received the “rushed” report.  The exam showed ‘nothing’ of significance. In fact, there’s a scoring potential tumors are given to indicate the likelihood of cancer, called a Birad. It was so normal, mine was a 2, which means cancer is not at all likely. My PCP didn’t believe it; neither did I. 

I took the disk with the images directly to my husband who took a look in between patients. He immediately knew it was a bad exam. He immediately knew there wasn’t enough tissue in the image to determine what was going on. He immediately knew the grapefruit-sized mass we were all feeling wasn’t originally detected in the images because it was the ENTIRETY OF THE IMAGE…with no healthy tissue needed to differentiate from the tumor. He repeated the exam and quickly found the margins of the mass. He measured. He called in the surgeon he was working for that day to take a look. Both were intrigued. It was a dark irregularly shaped black spot. Marc said its initial presentation was consistent with a fluid-like substance; however, it was certainly not a cyst. The best hypothesis was fluid that was likely blood or puss, and a biopsy was absolutely necessary. At this point, everyone who had examined me was more intrigued than worried and all were convinced time was of the essence as we proceeded to determine what was going on. No one was of the 'let's wait and see' mindset.

On Tuesday, December 18th, I showed up for the biopsy. I was nervous but very hopeful we would drain the now hypothesized abscess, get some antibiotics and move on to Christmas break. During the biopsy, things turned from intrigue to concern as the mass we were expecting to have a fluid-filled core didn’t. It was hard. I saw something shift in Dr. Lewis’ face and countenance in general.

I immediately asked, “Do you play 'worst case scenario'?” With a sigh, he replied, “We can.” And at that moment, I knew what he was going to say. I was right as the next words that came out of his mouth were, “Inflammatory Breast Cancer”.  I will never forget his next words. “IF that is what this is, we have options. We will take good care of you.” He completed the biopsy, prescribed antibiotics just in case it was an infection, and reassured me I was in good hands. 

Two days later on December 20, 2018, I received a text at work from my doctor asking to meet for coffee. I knew I had cancer.