Nicole Miller

July 2014

In 2010, I was a 17 year old senior in high school – and my focus was on Spring Break, beach week, prom dresses and most importantly graduation! In April, I came home from a Spring Break beach trip with my friends, and while I was changing my clothes, my mom noticed that my stomach looked enlarged on the left lower side when I bent backwards. I didn’t think much of it, not only because I had the “I am invincible” teenage attitude, but I had been to the gynecologist in January of that year.

To appease my mother, however, I went to my primary care physician the next day. After a pelvic exam, she sent me straight to the local ER in Virginia, where I was living at the time. When I arrived, they did a transvaginal ultrasound and immediately wanted to do surgery. Luckily, they called my primary care doctor, and she recommended that they send me back to her for follow-up. She did a blood test, and I went on my way to enjoy the rest of Spring Break and the remainder of my senior year.

Two days later, my doctor called and told me that I might have cancer. She advised me to go to the hospital that night.

When I arrived at the hospital that evening in early April, I was prepped for surgery, which would occur the next morning. I was told it would be performed by a gynecologic oncologist. Morning came and I had the surgery which lasted 8 hours. When I woke up, I was told I had Stage 4 germ cell ovarian cancer. The tumor was almost the size of a basketball. In addition, the omentum, appendix, left ovary, left fallopian tube, and dozens of lymph nodes were removed. This left a 13-inch scar right down the middle of my stomach.

I was in disbelief. How could a tumor that large be hiding in my 110-pound, 5’8 body frame? I was extremely frustrated and confused. I had gone to the gynecologist earlier that year complaining of stomach discomfort and pain when I stood up. I was told that I just had really bad cramps and was asked if I just didn’t want to go to school.

I started chemotherapy a few days after my first surgery. I was put on BEP (bleomycin, etoposide, cisplatin) which was one of the strongest combinations of chemo I could get.

That week was also my 18th birthday. Instead of having fun, I had another day of chemo and I shaved my head. That’s when it all became real.

I chose not to get chemo in a hospital but rather I did it at a local oncologist’s office closer to my house. I received that treatment five days a week for multiple months. Luckily, I only had to get bleomycin every other week. Bleomycin caused intense bone pain, flu-like symptoms, and made me feel like I was on fire.

For me the physical side effects were not the issue, it was the emotional ones. I felt alone. Everyone just stared at me because I was so young, and everyone else was much older than I was. That age gap made it hard for me to talk to other cancer patients. At the same time, the doctors struggled to find a way to talk to me that was not too childish but in a way that I could understand. I didn’t always understand when they spoke to me as an adult.

Because my identity was so intertwined with my high school life, I felt I lost that. I couldn’t go to school and couldn’t do all of the activities every senior looked forward to for their whole high school career.

I finished my chemotherapy treatment later that summer, and I was sent for genetic testing. My doctors wanted to know if there was a genetic reason that I developed cancer at 17, and more specifically, why I got that type of cancer (germ cell ovarian cancer). I had no family history of any other type of cancer, and I was in otherwise perfect health. A month after I underwent the genetic testing, my endocrinologist informed me that I did have a genetic disorder. However, it was not the common BRCA gene default. Instead, I had a very rare disorder called Swyer Syndrome, which directly causes the type of cancer I had.

I was even more confused and frustrated with this diagnosis than I was with the initial cancer diagnosis.

In order to “fix” Swyer Syndrome, I had to get my other ovary and fallopian tube removed. I received that surgery around Thanksgiving 2010. I was lucky that this disorder was detected, because my other ovary already had cancer cells on it. Thankfully, I did not require more chemotherapy.

Even though I have physically survived cancer, I feel my survival story has just begun now, four years after diagnosis. Having this happen to me during a very important transitional time in my life has caused unique issues for me. At the time my cancer journey began, infertility was not even one of my concerns; I was 17 and it wasn’t important to my life right then. Now that I am 22 my infertility has become an issue. I also have a lot of anxiety about having had cancer and what it means for my future. Although I am struggling with these issues, I have still managed to thrive.

Now after being in remission for three years, I can say I have achieved a lot. I got to walk across my high school graduation stage and am now a senior at Portland State University studying social work. My goal is to help youth who are struggling with cancer. I also married my high school boyfriend who stuck by my side from the very first day I was diagnosed. We married in May 2013, and then moved to Oregon that same month. My cancer experience also brought my family much closer together, and we provide each other support.

In addition to my college studies, I am actively involved in the Survivors Teaching Students® program of the Ovarian Cancer Alliance which allows me to talk about my experience to future medical providers (doctors, nurses, etc.). This makes me feel empowered, and like I am finally conquering cancer.

Cancer might be a bad thing to have, but I am lucky in many respects.