My Sister's Death Taught Me How To Advocate For My Own Health

My Sister’s Death Taught Me How To Advocate For My Own Health

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My sister died because of a false negative breast cancer screening.

She was 52.

At 15, she started getting benign cysts in her breasts. These were indicators she was more likely to develop breast cancer. Her cysts — about 20 in total — required numerous surgeries, but every biopsy came back negative for cancer. In her late 30s, her doctor recommended she get mammograms. She never missed one. She was still getting cysts in her breasts, but they always came back negative.

Four years before she died, she went in for her annual screening. Because she had so many benign cysts, she also had a breast ultrasound, which can detect changes in breasts and differentiate between a cyst and a solid-mass that could be cancerous.

The screening came back clear. The next year was the same. Two years before she died, she went in for her mammogram and felt something in her breast. She mentioned it to the technician. The screening came back clear. She felt something wasn’t right, but she trusted the technician knew her job. She developed a violent cough a few months later. One day during a coughing spell, she heard something pop. The pain was excruciating. She went to her doctor and discovered she had broken a rib.

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Something told her the broken rib was connected to the breast abnormality she felt. She immediately went for another mammogram at a different facility. She was right. She had stage-4 breast cancer. It had spread to her ribs and her eye. Her doctor said the type of breast cancer she had was slow-growing, so she probably had it for a few years by the time it was discovered.

She died two years later.

Her story isn’t new or unique. Breast cancer screenings miss about 20% of breast cancers. While that statistic is disheartening, we can’t just count on mammograms to tell us about our breasts. Here are some ways we can advocate for our own health.

We all know we should do a monthly breast self-exam. These are important in detecting abnormalities in our breasts. Set a reminder on your phone every month to do it. This only takes a few minutes, but it could save your life. In addition, schedule a clinical breast exam so a professional can check your breasts, too. If you have particularly dense breasts, ask your doctor about a breast ultrasound.

Why am I so passionate about women advocating for our own health? On top of unnecessarily losing my sister to breast cancer, I had my own experience with misinformation from a healthcare professional.

Uterine fibroids run in my family. My mother, sister and I all had them. My mother had a total hysterectomy when she was 31, which was the only option available at the time. When my sister was 31, she had a myomectomy, which involves cutting out the fibroids but leaving the uterus intact. I lived across the country at the time she had the surgery, so while I knew she had her fibroids removed, I didn’t know the details of the procedure.

Two years later, I went in for a pap smear and saw a new doctor. His bedside manner was cold, and he barely said two words to me. Usually doctors try to make you comfortable during the exam, but he didn’t even bother. He finished up and told me to meet him in his office. I got dressed, went to his office and sat down.

He told me I had fibroids and needed a hysterectomy. I was in shock. The fibroid diagnosis wasn’t new, but a hysterectomy? I was 31 (yes, the same age as my mother and sister when they had surgeries for their fibroids), but he didn’t offer me any other options. I cried. Then I left.

I called my mother, a nurse, and told her what he said. She calmed me down and told me to call my sister, who told me she had a procedure called a myomectomy for her fibroids. That was the first time I had heard of it. My sister said, while the recovery was painful, she felt much better. I went home and Googled the term to read up on it. I scheduled a second opinion for the following week.

After my exam, the doctor confirmed the fibroids. Then he gave me two options: leave them or have a myomectomy. I was relieved I didn’t even have to ask him about a myomectomy since he already gave me the option. I asked why he wasn’t recommending a hysterectomy. His answer? I was too young. I told him about the previous doctor. He said the surgery is complicated and time-consuming. Many doctors don’t want to perform it for that reason.

I had a myomectomy at 31. Eight years later, the fibroids grew back. I had a wonderful doctor, who gently recommended a partial hysterectomy. I would keep my ovaries but lose my uterus. I was almost 40 by then, so I opted for the hysterectomy. Along the way, I learned to speak up about my choices and trust my instincts.

Women owe it to ourselves to advocate for our own health. We do this so well for others, and we need to give just as much consideration for our own well-being.

Whether it’s a mammogram or simply an annual physical exam, ask your doctor questions. Let her know your concerns about that lower back pain or dizziness you have in the mornings.

Doctors are people just like us. They make mistakes. Some are better than others. If you find yourself tongue-tied and too uncomfortable talking to your doctor, consider switching to a new one. I personally am more comfortable with female doctors. I feel like they listen to me. Think about your ideal doctor and seek him or her out. It may take time to find someone you trust, but it’s important you do.

When you get a diagnosis, do some homework. The Internet is filled with useful information, but it’s also filled with misinformation. While there are reliable sources like MedlinePlus, a government website, where you can find accurate health and drug information, websites shouldn’t be used to diagnosis yourself. Only a doctor can do that. 

Let’s put us first for once. We owe it to ourselves and our loved ones to take our own health seriously.