Voices Across America

Too Young for Breast Cancer, twice.

Megan

State: California
Congressional District: CA30

Diseases

Cancer

Issues and Challenges

Megan has encountered: Access to Expert Providers, Copay Issues, Insurance Issues, Disability, Invisible Illness, Social Security Disability

My Story

“Too young” for breast cancer at 30, now a metastatic survivor.

“I’m worried the pain in my chest is breast cancer" I told the doctor upon our first and only meeting. I went on to explain the on and off again pain that I had been feeling for several months and even mentioned the loss of my father to lung cancer two years prior as well as my friend’s recent passing in her 20’s to breast cancer. The doctor’s brow twisted with skepticism as she spoke: “Pain isn’t a symptom of breast cancer and you don’t have a family history of the disease. Plus you’re so young” she added.

She let me leave without setting up a return appointment or referral because it was “probably nothing” and at the time I didn’t know how to advocate for diagnostic testing to prove otherwise. I was 30 and I truly wanted it to be nothing too so I let her perspective frame the way I saw my symptoms since she, a medical professional in a white coat, casually told me to come back in a few months if it’s still bothering me.

Several months later, I felt site specific pain that led me to a lump in my breast that I could feel was growing. I went to a different doctor who gave me an exam and who also wasn’t concerned. So I too wasn’t concerned. The one saving grace was that she ordered an ultrasound for my “peace of mind” but instead of any sort of peace it led to a mammogram, biopsy and finally a diagnosis of stage two breast cancer at the age of 30.

I threw the book at my disease: I went through infertility preservation treatment before starting six rounds of chemo followed by a double mastectomy plus reconstruction surgeries. I then received five weeks of radiation and was on long term hormonal therapy. Treatment worked well as I was NED (no evidence of disease) for almost five years. Then out of nowhere I felt pain again. This time it was a cramp in my chest wall which led to a scan that would eventually lead to a diagnosis of recurrence of the disease. But now it’s stage four or metastatic. This time it’s incurable. My one saving grace was the lessons I had learned about how to advocate for quicker testing.

I could tell you what a wild ride 2020 was navigating a recurrence of disease at the age of 36 in the middle of a pandemic which had already caused me to lose my full-time job and insurance. I could tell you how my then live-in boyfriend and I became domestic partners so that I could legally change my insurance and get into a better hospital (spoiler alert we got married six months later). Or I could tell you how I started doing clinical trials as a necessity to stay alive but that I now do trials to forward science and to pay it back to all of those who put their bodies on the line before me. But those are longer stories for another day.

Today I’m on my second clinical trial and this line of treatment has been going strong for two years. I’m focused on combining my personal experiences with cancer and my background in performing and writing (which feels very full circle because that’s the reason I landed in Los Angeles in the first place). I work with organizations to share my story and educate about the signs and symptoms of breast cancer. I speak out about the young breast cancer experience and the need for young people in particular to advocate for their health. I also acknowledge the privilege that I have as a college educated woman who identifies as straight and white and work with my representatives to support bills that will create a more equitable healthcare system, especially for marginalized members of our communities.

My Motivation and Inspiration

What keeps me motivated is knowing that the work we do today whether it’s political in nature or educational or forwarding research…it’s going to hopefully be better for everyone who is diagnosed after me.

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