#BeyondTheBreast: We Are Our Best Advocates

March 23, 2018

Metastatic breast cancer, also called stage IV breast cancer, is breast cancer that spread beyond the breasts and nearby lymph nodes to other parts of the body. Metastatic breast cancer affects the bodies and emotions of those living with it in unique ways.

For LBBC’s spring #BeyondTheBreast campaign, on March 26, members of LBBC’s fall 2017 class of Hear My Voice Outreach volunteers wrote about their experiences with metastatic breast cancer and how the disease has affected them.

Here, Michelle Hauser-Wallace, 46, of Madison, Wisconsin, writes about the importance of knowing your body and speaking up when something doesn’t feel right. Read her story and learn how you can get involved with #BeyondTheBreast.

My journey with breast cancer has taught me to be mindful of my body and to speak up when things are not quite right. I accidentally discovered my own breast cancer prior to my initial, early-stage breast cancer diagnosis, and I pointed out a concern to my healthcare team prior to my metastatic diagnosis. We know our own bodies best so being vigilant and voicing our concerns are critical when dealing with a potentially deceitful and deadly disease such as metastatic breast cancer.

Prior to being diagnosed with breast cancer the first time, I accidentally came across a lump in my breast while bathing even though I had just been cleared by a mammogram. Initially, I did not think much of this lump because it was such a tiny spot. It did not hurt; it was not noticeable; and I was not at risk for breast cancer, so I thought, based on my take-away from an earlier conversation with my primary care physician. I had been led to believe that I was not at risk because my mother, sister and aunt did not have breast cancer. My paternal grandmother and great-grandmother had it later in life, but I was told, wrongly, that did not increase my risk given their age. Unfortunately, I was not told that I had dense breasts, which makes it harder for the mammogram to detect breast cancer and may increase one’s risk for breast cancer.  Not knowing this, I decided to forget about the tiny spot because after all, the mammogram is the holy grail of breast cancer detection, so I thought, and it had cleared me.

A couple of months after my mammogram, I accidentally came across the same spot again while bathing. It was still there. I thought, “Maybe I should say something to my medical team.”  Again, I was confident that it was probably nothing. I called my doctor’s nurse with the news. Then, I was sent for another mammogram, an ultrasound, and eventually a biopsy. Two days after my biopsy, I found out that I had breast cancer. I was stunned as I had never given breast cancer a single thought throughout the entire process. In hindsight, I hate to think what would have happened if I would have continued to let that little spot go. It would have been so easy to ignore.

I’m thankful that I spoke up.

My breast cancer turned out to be triple-negative breast cancer, or TNBC, an aggressive form. Following months of chemotherapy, I had a bilateral mastectomy. The surgeon was able to remove an ample margin around the tumor for testing, and my pathology report came back clean. Yeah! I was cancer-free, so I thought. 

About a month after my mastectomy, I noticed a small hard spot on the surface of my chest. I was scheduled to see the nurse practitioner, in lieu of my oncologist, for a follow-up appointment. I asked the nurse practitioner about it. She said that it could be my tissue expander, from breast reconstruction surgery, poking through. That seemed plausible because the expanders did shift and poke me in different places, making them very uncomfortable at times. About a month after that visit, I had a visit at the plastic surgery center and I saw the physician assistant. I asked her about the spot and shared the nurse practitioner’s comments. The physician assistant told me that it was in my skin and that it may be scar tissue from the mastectomy: Perhaps the laser got too close to that area during the procedure. That seemed plausible as well. Unfortunately, my concern was not communicated to either of the doctors – my oncologist or plastic surgeon – so nothing more happened.

About 2 months later, I saw my oncologist. When she saw the spot, she was immediately skeptical. She sent me for a biopsy. It was triple-negative breast cancer. At that time, my scan showed spots in my lungs as well. I was diagnosed as metastatic.

The silver lining is that the spot on my chest was my ticket into a clinical trial that required a 1- centimeter lesion for measuring progress. The spots in my lungs were too small to meet the requirement.

My journey to this point has taught me to be mindful of my body, suspicious of unusual changes, and to call out those concerns. I have learned through my personal experiences and the experiences of others. Sadly, my friend Lucy passed last November from metastatic triple-negative breast cancer. She was first diagnosed with early-stage TNBC in 2012. She had surgery and received a clean pathology report. Life was so good after surgery that she felt as though she were able to put breast cancer well behind her. Then, about 2 years out from surgery, she developed a persistent cough that went on for several months. She was checked and it was thought to be a cold or virus. Later it was discovered that the cancer had returned with a vengeance, as metastatic breast cancer, and she was encouraged to get her house in order. My dear friend, Lucy, left us way before her time. 

Breast cancer does not present itself in a neat little package, with a label that reads “cancer.” It’s deceitful and can present itself in different forms and through different symptoms, so I continue to strive to be extra vigilant, speak up when something is off, and encourage others to do the same. We really are our own best advocates.    

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