Young Women Can and Do Get Breast Cancer
Elizabeth’s story Age at Diagnosis: 21
I no longer like the 29th day of the month, especially if it lands on a Tuesday. Not only did my mom pass away from ovarian cancer on Tuesday the 29th, my father passed away on a 29th as well.
In 2008, my life had a drastic change of direction. I was 21 years old and had taken a semester off from college to care for my mom. She had been diagnosed with ovarian cancer 11 years before at age 50, and her body was now betraying her. We weren’t sure how much more time we would have with her. Since I was only 10 when my mother was diagnosed, cancer had been a big part of my life, but it still seemed unreal that she was going to leave us.
My mom had been a nurse and had made certain that my sister and I was aware of our family history of ovarian cancer and that we were aware of our heightened risk factor. What I never thought about was breast cancer. Three weeks after my mom passed away, I was in the shower and felt a lump in my left breast. At the time, I didn’t know young women were at risk for breast cancer. I underestimated the connection between ovarian and breast cancer and certainly didn’t think I had to worry about it.
I ignored the lump for a while, and, when it didn’t go away, I showed a few friends. They all thought I should go get it checked out. I made an appointment and was seen by a nurse practitioner that used to work with my mom. We lived in a small town in Wisconsin, so she didn’t just know my mom but knew my family medical history too. When the nurse felt the lump, she immediately told me I needed to have this mass examined. She suggested a doctor to see, and I made an appointment.
I had an incisional biopsy performed, and I expected to wait a few days to get the results. I was given a follow-up appointment for the next Friday. That same week, I received a call from the nurse telling me that the doctor wanted to see me. I had not yet returned to school and was now living with my sister who lived about an hour and a half away from the medical center. I asked if it could just wait until Friday, instead of having to make the two trips. The nurse said it couldn’t and she’d get the doctor on the phone. I asked if they had the pathology reports back yet. She said they had. I asked if it was benign, and she said she would go get the doctor.
I knew at that moment that the tumor was not benign and I had cancer. Six weeks after the death of my mother, I was diagnosed with breast cancer. The doctor asked if we could come in sooner than my appointment; he wanted to see me as soon as possible. My sister, then nine months pregnant and near her delivery date, called my brother-in-law who immediately left work. We soon got on the road to make the trip to the hospital. This was the same hospital where my father was in the intensive care unit (ICU), at the time, fighting an infection due to his diabetes.
When we arrived at the hospital, we went to see my father and wait for the surgeon. This was the same surgeon who told me he was 99% sure the lump would be nothing (young women don’t get breast cancer after all). He then had to tell my family that, in fact, I did have breast cancer. I was diagnosed with invasive ductal carcinoma, late stage 3A, and I was estrogen positive (ER+) and progesterone positive (PR+). The tumor was 2.5 centimeters, and 8 of 17 lymph nodes on the left side showed signs of cancer.
I hadn’t been tested for the BRCA gene, but, with my family history, my medical team and I decided to treat my cancer as if I was BRCA positive. I choose to have a bilateral mastectomy, which was followed by chemotherapy, radiation and hormone therapy. Since I knew I did eventually want to have kids, my doctor started me on hormone suppression therapy in order to protect my ovaries. This treatment decision allowed for the immediate start of chemo.
Unfortunately, because I’d taken time off of school, I was no longer eligible for my school-sponsored health insurance plan. The short-term catastrophic plan I did have had conveniently just expired. I was freaking out and didn’t have a clue how I was going to pay my medical bills. While I was talking it over with my sister, she reassured me that I’d be okay. She’d make sure I had a place to live and someone to care for me and we would figure out the rest.
I’d been afraid of running up debt while undergoing treatment, but I was able to get my treatment covered by Medicaid and had a part-time job. With that, I also had the security and love of my sister’s home and the added bonus of my wonderful new nephew to keep me company as I went through treatment. The next fall we lost my father, again on the 29th day of the month that also happened to be a Tuesday.
I decided I needed to start finding my way again. I knew I wanted to be involved with politics. My father had been a politician in Wisconsin, and we often spoke of politics in our home. I decided to take a chance and move to Washington D.C.; it’s what the “healthy” Liz would have done. Within a short time, I was fortunate to find a job and am now a legislative assistant. My sister encouraged me to try to meet other young women dealing with breast cancer. She wanted me to have people close by to talk to, who would understand what I’d just been through.
I reached out to Young Survival Coalition’s D.C. group. I knew about the organization when I lived in Wisconsin but never really connected. I thought I’d try now that I was in D.C. Through the group’s emails, I heard about C4YW, the Annual Conference for Young Women Affected by Breast Cancer. I decided to attend. That is where I met the five ladies in my life that are so important to me. We were all diagnosed in our 20s, and we felt an instant connection to each other.
I met this group of amazing young women in February of 2012, and they’ve proven to be some of the most important friends I think I’ll ever make. Even though we are spread across the country, we stay in touch with the help of technology. We’ve even been able to meet this past summer in California for a mini-reunion.