With Metastatic Breast Cancer, I Can’t Control Much — But That Only Makes Me Fight Harder For a Cure

As told to Erica Rimlinger

My grandmother was diagnosed with breast cancer in her 40s, and my Ashkenazi Jewish heritage is a risk factor for breast cancer. So I started getting mammograms when I was 40, back before that was the recommended age for everyone.

The second mammogram I had, at age 41, found cancer: ductal carcinoma in situ (DCIS). I knew there was a reason for my vigilance, but it still felt really unexpected. On the other hand, the vigilance of the early mammograms clearly paid off: my cancer was believed to be stage 0. Although I was handling a range of emotions — everything from shock to fear — I was grateful the cancer had been found early. After getting opinions from three doctors, I decided to have a double mastectomy.

After the surgery, my cancer was restaged to 1A, which meant the cancer, though still small, had already spread outside my milk ducts. Still, I had already chosen the most aggressive treatment, so there was nothing more that could be done. It was a challenging time, but I got through it with the support of my friends and family.

In April 2020, I developed a cough. I thought it was allergies or acid reflux, but a month into the pandemic lockdown, I feared it was Covid. The cough continued to get worse and lasted a long time, but because of the pandemic I didn’t rush into the doctor’s office.

By May, I knew something was wrong. I was a reasonably fit and healthy person, and I was now getting winded walking up the stairs. I went to the doctor, who ordered a CT scan. Two months before my 44th birthday, I was diagnosed with breast cancer that had metastasized to my lungs, liver, spleen and bones. My family and I were reeling. My risk of recurrence was so low, yet just two years after my early-stage diagnosis, I had metastatic disease.

Before I could even wrap my brain around the diagnosis, the doctor said I had to start chemotherapy right away. A lot of people feel sick after chemotherapy. But my experience was different. I felt so sick from the cancer that the chemo treatments — though not easy — made me feel better. I could actually feel the chemo working to reduce the cancer in my lungs. Even as I endured unwanted side effects, I knew my treatment was destroying my tumors, and that kept me optimistic.

Eighteen months later, at a metastatic breast cancer support group, I mentioned in passing that I’d had a headache that wouldn’t quit — for two weeks. Two friends in the support group pulled me aside and said I needed to tell my oncologist.

After a brain MRI, the doctor and the nurse practitioner walked into my room together. I knew immediately the news wasn’t good. The cancer had spread to my brain.

I was fortunate to be able to join a clinical trial testing a new drug combination for brain metastases. But six months into the treatment, my brain lesions started growing. I had to leave the trial and start radiation.

I questioned whether this was the beginning of the end. But cancer, as I know from too much experience, doesn’t follow the rules. I don’t know what path my treatment will follow. I don’t know what my future will bring — does anybody? Maybe there would be another clinical trial I could join. And maybe I could do something to help more clinical trials materialize.

I decided to share my story far and wide in hopes that we could raise money for research. My community responded, raising more than $875,000 for metastatic breast cancer research. It’s even a family effort: My older daughter did her own fundraiser during the pandemic.

Since I left the clinical trial, I’ve changed treatments two or three times. I will be in some sort of treatment for the rest of my life, but I’m grateful I’ve managed to maintain a good quality of life for the past three years and hope that continues for a long time.

When friends ask me if I’ll talk to their newly diagnosed friend or family member, I warn them my story could scare them rather than soothe them. People may not want to hear that my early-stage cancer metastasized. But, until we find a cure or better treatments for metastatic cancer, there aren’t any guarantees.

I try to make each day as normal as possible. Some days you would never know that I’m living with stage 4 cancer. Other days, I need more rest. It’s probably true my diagnosis is always on my mind: It’s just not always top of mind. I live with uncertainty, but I still live a very full and joyful life. When my husband and I worried about putting our kids on the cancer roller coaster, a therapist advised us to be open and honest with them in age-appropriate ways. “Kids do best when they are strapped into the roller coaster with their parents,” she told us.

Aside from the day-to-day help with meals, carpools and emotional support, my community’s incredibly generous fundraising efforts to support research have really been the greatest source of support.

It’s been empowering to know that so many friends, family and even total strangers are committed to the same cause. New therapies are being approved every year. Research is why I’m alive today — and tomorrow’s treatments keep my hope alive for the future.

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