as told to Erica Rimlinger
My grandmother was diagnosed with breast cancer when she was 40 years old and my Ashkenazi Jewish heritage It is a risk factor for breast cancer. So I started getting mammograms when I was 40, 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 seemed really unexpected. On the other hand, the surveillance of the first mammograms clearly paid off: my cancer was believed to be stage 0. Although he was dealing with a range of emotions, from shock to fear, he was grateful that the cancer had been found early. After receiving opinions from three doctors, I decided to have a double mastectomy.
After surgery, my cancer was restaged to 1A, which meant that the cancer, although still small, had already spread outside my milk ducts. Still, he had already chosen the most aggressive treatment, so there was nothing more that could be done. It was a difficult time, but I got through it with the support of my friends and family.
Jen with her family, 2023
In April 2020, I had 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 to the doctor’s office.
In May I knew something was wrong. I was a reasonably fit and healthy person, and now I was getting out of breath walking up the stairs. I went to the doctor, who prescribed me computed tomography. 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 very low, and yet just two years after my early-stage diagnosis, I had metastatic disease.
Before I could even understand the diagnosis, the doctor said I had to start chemotherapy right away. Many people feel unwell after chemotherapy. But my experience was different. I felt so bad about the cancer that the chemotherapy treatments, although they weren’t easy, made me feel better. In fact, I could feel the chemotherapy working to shrink the cancer in my lungs. Even when I suffered 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 go away…for two weeks. Two friends from the support group pulled me aside and told me I should tell my oncologist.
After brain MRI, the doctor and the nurse entered my room together. I knew immediately that the news was not good. The cancer had spread to my brain.
I was fortunate to be able to participate in a clinical trial testing a new combination of medications for brain metastases. But six months after treatment, my brain lesions began to grow. I had to abandon the trial and start radiation.
I wondered if this was the beginning of the end. But cancer, as I know from much experience, doesn’t follow the rules. I don’t know which path my treatment will follow. I don’t know what the future holds for me, does anyone know? Maybe there would be another clinical trial I could join. And maybe you could do something to help more clinical trials come to fruition.
I decided to share my story everywhere in the hope that we could raise money for research. My community responded and raised over $875,000 for metastatic breast cancer research. It’s even a family effort: My oldest daughter organized her own fundraiser during the pandemic.
Jen with her daughters, 2022
Since leaving the clinical trial I have changed treatments two or three times. I will be in some type of treatment for the rest of my life, but I am grateful that I have managed to maintain a good quality of life for the last three years and I hope that continues for a long time.
When my friends ask me if I will talk to their newly diagnosed friend or family member, I warn them that my story might scare them instead of calm 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 are no guarantees.
I try to make every day as normal as possible. Some days you would never know I was living with stage 4 cancer. Other days I need more rest. It’s probably true that my diagnosis is always on my mind: it’s just not always the first thing on my mind. I live with uncertainty, but I still live a very full and joyful life. When my husband and I worried about putting our children on the cancer roller coaster, a therapist advised us to be open and honest with them in age-appropriate ways. “Kids do better when they’re strapped to the roller coaster with their parents,” he told us.
Aside from daily help with meals, rideshares, and emotional support, my community’s incredibly generous fundraising efforts to support research have truly been the greatest source of support.
It has been comforting to know that so many friends, family and even strangers are committed to the same cause. New therapies are approved every year. Research is the reason I am alive today, and the treatments of tomorrow keep my hope alive for the future.
Do you have any real women, real stories of your own that you want to share? let us know.
Our Real Women, Real Stories are authentic experiences of real-life women. The views, opinions and experiences shared in these stories are not endorsed by HealthyWomen and do not necessarily reflect the official policy or position of HealthyWomen.
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