Opinion: What a cancer misdiagnosis taught me about coping with medical distrust

I had breast cancer that had traveled to my lymph nodes, and on a bone scan it appeared to have spread to my skull. For two weeks, I had been reading the dismal, nauseating survival statistics for younger women with metastatic breast cancer.

“If I were in Vegas, I’d put money on you being alive in five years,” my doctor said.

It was a relief to have someone put winning odds on me being around for that long, but I was reeling from the news.

I was a healthy, 31-year-old surgery resident. I had no known risk factors for breast cancer, aside from some relatively distant family history. A year and a half earlier, I felt a hard lump smaller than a pea. At the time, a breast cancer specialist said it was a benign cyst.

The lump didn’t go away. Over a year later, when I felt a second small lump right next to it, I returned for a needle biopsy.

This time, the results showed aggressive cancer.

Too many women have faced a diagnosis like mine. Thirteen percent of women in the United States will be diagnosed with breast cancer, and about 9% of them will be younger than 45. For younger women, outcomes are often worse. Five-year survival rates for women younger than 40 are 5% lower than for older women.
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I was shocked by my diagnosis, and felt betrayed. I was training to be a doctor, and wasn’t expecting the physicians taking care of me to make this mistake. I questioned the profession I had committed to for nearly a decade, and began to lose trust in the health care system I would need to rely on to survive.

This past year, I have revisited this experience in light of the massive pushback by many Americans against public health mandates, masks and vaccines, which is often based on mistrust of physicians and health care systems. Recent polls indicate around 20% of Americans are unlikely to ever get a Covid-19 vaccine.

I understand where people are coming from when they say they don’t trust medicine, or when they express hesitation about the Covid vaccine. I am a doctor, but as a patient, I have struggled with my own mistrust.

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Ultimately, I knew I had to cope with my own mistrust to get the necessary treatment. I was so fortunate that the cancer had only spread to my lymph nodes, and that a skull biopsy showed no disease. I had a chance for cure. But in order to fight my breast cancer, I would have to commit to surgery, chemotherapy and radiation.

I was relieved to have a path forward, but I also felt a lot of anxiety. I was afraid of what the medications would do to my body and felt I was poisoning myself with chemotherapy and radiation. I felt tremendous pressure to protect myself from additional medical errors, which made me second-guess every decision.

I also knew the medications, doctors and hospitals could save my life. So, with my family and my doctors, I bet the odds and won.

It takes a leap of faith, along with sound advice and reliable information, to trust medicine and doctors. I know how difficult it might be for those who are hesitant about Covid-19 vaccines to take that leap. But it is a tragedy that we have lost more than 730,000 lives to Covid-19 in less than two years, and mistrust is preventing people from protecting themselves.

In my professional role, I know what it means to be the human responsible for the health of others. We are not perfect. But ultimately, the doctors who cared for me successfully treated my cancer. And just as I wish the best for my own patients, I have no doubt that the doctor who initially misdiagnosed my cancer, and then made the correct diagnosis, wanted the best for me. And he set me on the path to where I am today.

As we approach the end of this Breast Cancer Awareness Month, let us celebrate the importance of taking charge of our health — for women diagnosed with breast cancer, and for patients diagnosed with Covid-19. It may be frightening to get a mammogram, or to get a Covid vaccine, or to ask questions if something doesn’t feel right. It takes courage to overcome the fear and mistrust. But doing so just might save your life.


Christin Hakim

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