Breast cancer was not on my radar 5 years ago, but now it’s an incurable illness that’s in my face every day. I was 37 years old in the spring of 2018 when I was diagnosed with metastatic breast cancer, also known as stage IV breast cancer. Metastatic breast cancer describes a type of breast cancer in which the cells have broken away from their original location to form a new tumor in a different tissue or a different organ.
The spread of cancer cells from their original site is called metastasis. It most often spreads to the bones, liver, lungs, and brain. I remember when I finally viewed my scans, thinking my whole chest was lit up like a Christmas tree. It was terrifying. I had metastases in my lymph nodes, mediastinum (the area between my lungs), and lungs.
One of my first thoughts was, “I don’t have time to be sick.”
As a disabled, single mother living with chronic bipolar 1 disorder, I already had a lot on my plate. My life has been marked by adversities, so I viewed receiving a breast cancer diagnosis as another inconvenient circumstance that I was going to have to get through.
Another thought I had was, “This cancer could have been caught sooner.”
Distorted thinking had me blaming myself for the rapidly spreading cancer cells. I was scared and angry. Mania fueled my determination to beat this disease.
The first time I noticed the suspicious lump in my right breast was in 2016, 2 years prior to being diagnosed with hormone receptor-positive, HER2-positive invasive ductal carcinoma with lobular features.
When I went in to get the concerning lump checked out, during my routine OB/GYN exam, the on-call doctor brusquely said:
“You have no family history of breast cancer. You are too young. You are breastfeeding, so it is likely a clogged milk duct.”
My primary care doctor was unavailable, so I agreed to be seen by another provider who was unknown to me. The appointment that I had waited over 2 weeks for felt rushed. This doctor misdiagnosed the skin dimpling, the inverted nipple, and the pea-sized lump around my right breast as a clogged milk duct. Due to his demeanor and the way I was being spoken to, I remember feeling ridiculous for even thinking it might be cancer. Although I didn’t feel that my concern was taken seriously, I did believe what he told me because he’s the one with a medical degree.
Admittingly, I didn’t have the best breast self-awareness. I didn’t know the risk factors. My breasts had changed a lot over the time I spent breastfeeding my daughter. During one point in my breastfeeding journey, I had self-diagnosed myself with a mild case of mastitis, so when the doctor said it could be a clogged milk duct, I accepted this diagnosis. I wish I’d listened to that nagging voice inside of me that signaled “something doesn’t seem right.” In hindsight, I should’ve advocated for myself and asked for additional screening.
I have learned a lot since my initial misdiagnosis. It didn’t matter that I had no history of breast cancer in my family. I was adopted at birth, so the information I did have on my biological family’s medical history was limited until I could do genetic testing. When the testing came back negative for cancer markers, I was left wondering, “How did this happen?
I may never know the exact answer, but I feel that I have an obligation to educate myself to better understand this cancer. I now share my experiences in hopes to spread awareness of the importance of advocating for yourself. It’s OK to ask for additional screenings and second opinions. If something doesn’t feel right, don’t ignore the feeling!
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Photo Credit: Tetra images via Getty Images
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