Age at diagnosis: 17 years old
Story posted: October 2006
In the spring of 1997, I began having pains in my abdomen. These pains were like no other stomach ache or cramp I had ever felt in my young 17 years.
My dad had recently been diagnosed with bladder cancer, and I thought my pains could be an ulcer caused by worrying about him. For that reason, I did not want to tell my parents. I did not want them to worry about me; he was going through enough already.
Soon to follow, I began gaining weight quickly and it appeared as though this weight was only going to my stomach area. As odd as it may sound, I did not associate the pain with the weight gain.
My junior prom approached and I could barely fit into the dress I had bought only two months prior. I broke the zipper and ripped the seams. Finally, the following Wednesday I told my mom I really thought I should go to the doctor. Since it is unlike me to make such a request, my mom knew something was wrong and got me into see the family doctor that afternoon.
As my doctor asked me questions, he insisted I was pregnant. After I assured him that that was not possible, he did an x-ray which showed a number of dark spots. My doctor was puzzled and repeatedly asked me if I had ate anything out of the ordinary that day and if I was certain I had taken all metal off my body before the x-ray.
He then did a pap smear, which at the age of 17 was terrifying, never had having one before and being thrown into it. He concluded that I had an ovarian cyst and told me not to be alarmed, since they are very common.
My mom, having my dad’s situation constantly in mind, specifically asked if it could be cancer. My doctor laughed and said, “No.” He ordered an ultrasound and said if it was smaller than a grapefruit we could treat it with medication, but if it was larger, then I would need to have surgery to remove it.
Two days later I had my ultrasound, which showed this “cyst” to be the size of a football. My dreaded surgery was scheduled for Tuesday, four days later. My doctor explained to me that I would have to miss my prom for fear of this huge cyst popping. When I told him it had been the previous weekend and that I had already gone, he said it was a miracle that this cyst hadn’t popped!
From that Wednesday through the weekend, my pain and abdomen size intensified so much that I became restricted. I couldn’t sit, stand, or lay. It all hurt too much. By Sunday, which ironically was Mother’s Day, I looked like a nine-month-pregnant teen about to give birth.
Because this “cyst” was growing so rapidly, they admitted me into surgery right away Monday morning, the same day that my dad had his first cancer treatment. A gynecologist performed my surgery, in which she was given a surprise when she realized this so-called “cyst” was indeed a tumor. My family was told there was an unexpected occurrence and that surgery would be a while longer.
My doctor carefully removed this large 15-pound tumor, which was growing on my right ovary and expanded across, connecting to my left ovary. In addition to the tumor, she also removed my right ovary and fallopian tube, lymph nodes, and some surrounding tissue. I remember immediately after waking up from surgery having the sensation of my stomach being gone and empty, sunken in.
One of the two oncologists in my North Dakota hometown was assigned to me and worked directly with my gynecologist to treat me. I had a second opinion at the University of Minnesota, where they agreed with my doctors’ protocol of diagnosing this malignant endodermal sinus tumor and the need for chemotherapy.
I underwent a summer of intense chemotherapy, in which I received three three-week cycles of three drugs: Bleomyacin, Cysplatnum, and Etopacide. I would receive outpatient treatments the first week from 8 a.m. to 4 p.m., Monday through Friday, and the following two weeks only on Mondays.
In surgery, the doctors did an alpha-feta protein cancer marker blood test, which came to a count of over 1,200, under 15 being normal. After surgery that count was cut in half, and for the most part I continued to respond well to the chemo, bringing my cancer markers down with almost each treatment.
Like most cancer patients, I had many setbacks and suffered many side effects from chemotherapy, including hair loss, mouth and throat sores, dark skin discoloration, seizure-like symptoms from Compazine, an anti-nausea medication, and the development of Reynaud’s Syndrome, a circulatory condition that I will have all my life (but believe that is a small price to have had to pay).
Losing my hair was not too hard for me because my friends and family constantly made a joke of it. My sister would always bring me new hats and bandanas. My uncle bought me a shirt that said, “With a body like this, who needs hair!” My brother would even draw life-like faces on the back of my head! To me all these were better than wearing a wig!
After being cancer-free for 13 years, I currently receive my checkups once a year, which I still come with fear and worry. However, I am confident that with my thorough checkups, if anything were to come up again, it would be caught early.
Like so many other young survivors I have met, I was told I was too young for this to happen, which is neither comforting nor true. Not only were we told this by our friends, families, and communities, but also by our doctors. The reality is a woman of any age is able to get ovarian cancer. Looking back, I am fortunate to have had symptoms strong enough to lead me directly to surgery resulting in my diagnosis. If it had not been for that, I may have been misdiagnosed numerous times like so many other women.
The biggest challenge for me would have to be not knowing whether or not I can have children. The uncertainty is just a strange feeling. I still have one ovary but the intense chemo I received can critically affect the chances of bearing children. At the same time cancer has shaped me to be who I am today. Being diagnosed so young and surviving has shaped my choices in life and has brought me more positives then negatives.
My biggest successes would have to be the fulfillment of sharing my story with others, spreading awareness, giving hope to others who haven’t known anyone to survive 13 years, and the connections I have made with people.
I learned about MOCA after I graduated in 2002 in Fargo and had moved down to Minneapolis with my sister. We moved into the Linden Hills neighborhood a few blocks away from our new favorite coffee shop, Turtle Bread.
One day, we were leaving Turtle Bread when my sister noticed a flyer advertising MOCA’s third annual Walk/Run, specifically for ovarian cancer. I was so excited and insisted that we had to go. My sister wanted to do some research to make sure it was a legit nonprofit, but I said I’m going!
My best and biggest memory would have to be that first year at the Walk/Run, when Molly Cade came running up to me and gave me a big hug. She said, “come meet everyone!” I remember meeting and hugging so many people, thinking that everyone was so kind, loving, and welcoming. I have been attending the Walk/Run since then every year with my sister. We try and get more and more people to go every year.
As horrible as this disease is, I would never trade my experience. That is starting to sound like a cliché coming from survivors, but it is true. In addition to bringing my family closer together and my Christian faith stronger, my experience allowed me to meet so many amazing people that I otherwise would never have met, and it also guided me to a career choice of public health education.