Dysgerminoma is the name of the cancer that grew in my young body more than 25 years ago. It is a rare germ cell tumor that develops mostly in adolescent girls and young women. It is also a form of ovarian cancer.
When I got the diagnosis of “dysgerminoma of the ovary” I barely knew what my ovaries were. The months leading up to my diagnosis were pretty uneventful: It was the fall semester of my 9th grade year and I was still in the process of making friends and getting to know people at school since I had only moved to that town the year before. I was 14 and a sometimes starter on the basketball team – in good shape but not really a great athlete. I was a good student and enjoyed school.
In November we had a homecoming dance for which my mom had sewn me a new outfit, which might seem strange now but was totally normal in 1989 in rural Arkansas. I was happy to go to the dance because I had missed school much of the week prior due to a severe bladder infection. But I had fun at the dance and life went on.
Sometime around our Christmas break I felt like I was gaining a little weight in my belly so I started wearing my shirts untucked. My abdomen had been a little tender the month before because of the bladder infection, though it didn’t seem like it was as big then. Upon further examination I realized my “pot belly” was hard and that seemed weird. I brought this to my mom’s attention and from the look on her face I realized it was not just weird, but scary.
It was the first Friday of January 1990 when Mom took me to our local doctor to see what was going on. I was about to turn 15 and was VERY innocent — think Never Been Kissed innocent — and the doctor wanted to do a pelvic exam. If that wasn’t traumatic enough, it was inconclusive and she needed to get an ultrasound to know more. Because we lived in a super small town and it was a Friday, the ultrasound had to wait until Monday, and we had to go to the next town over because our small town doctor’s office did not have an ultrasound machine.
That Monday was my 15th birthday.
The ultrasound on my 15th birthday showed a large mass on my right ovary (which was big enough to make me look 4 months pregnant) but because the test was still relatively inconclusive, they wanted me to see a specialist in Little Rock. And they wanted us to go the next day. We drove the nearly two hours to see the specialist and upon his examination (yes, another pelvic) he decided I needed to have surgery to remove the mass. Immediately.
The next morning — two days after my 15th birthday — I was at UAMS in Little Rock having a major operation to remove a yet unclassified mass that may or may not be malignant. This was no neat little laser or scope surgery; the tumor was so large, they probably couldn’t have used that technology even if it had existed then. The tumor was the size of a football and was growing on my right ovary. They removed my right ovary, my right fallopian tube, my appendix, and several lymph nodes in the area. My uterus, left ovary, and left fallopian tube were unaffected (and are currently still right where God put them).
Had the tumor been benign that would have been the end of the story, but because it was malignant, the next thing on the “to-do” list was to consult with a chemo doctor at Arkansas Children’s Hospital. I was to have six rounds of chemo on an outpatient basis over the next six months.
I started my first round at the end of January 1990 and was given cis-platinum, bleomycin, and VP-16 over the course of five days. Doing this as an outpatient was not easy as we lived nearly two hours from the hospital. I remember that on one of the days we had car trouble en route to the hospital. I had the IV needle taped to my arm so they wouldn’t have to start a new one (I didn’t get a port because they were only doing six rounds of chemo) and we were just kind of stuck on the highway. This was before cell phones, so I honestly don’t remember who helped us and how we got to the hospital but we eventually got there.
During that first treatment, the chemo made me sick – as it infamously does – but the week after the treatment I got very sick. We returned to the hospital to discover I had a bowel obstruction caused by scar tissue from the surgery to remove the tumor. This meant I needed another operation.
The second surgery was at ACH and my recovery from the surgery coincided with two events: 1) my hair falling out from the chemo, and 2) my first concert: New Kids on the Block. For my hair, we decided to get it cut shorter to make it easier to deal with as it was coming out, and get a wig. For the concert, I had a potential problem: I didn’t know if my doctors would let me go. This was obviously a HUGE concern for me as a 15 year old girl in 1990. They DID allow me to go, but said I had to wear a mask (but I didn’t). They also connected me to an organization called Arkansas Children’s Dreams and got me a backstage pass. Maybe not so impressive now, but trust me, it was a big deal then. And though I was nearly bald, very skinny, and weak from surgery and chemo, I had the best time.
For my second round of chemo they decided to make some changes to my treatment since I had not tolerated the first round very well. First, they switched me from cis-platinum to carboplatin to reduce the severity of some of the side effects, which also reduced the administration from five days to three. Second, the chemo would be inpatient instead of outpatient. Though that helped, after round two I got sick again after I got home. We returned to the hospital to get the diagnosis of another bowel obstruction due to scar tissue. Which led to surgery number three.
The remaining chemo treatments were less dramatic, though still terrible. The third surgery was my last surgery that year, though I ended up having two more operations due to scar tissue — an operation in 2001 and one in 2006 (while pregnant).
In between the chemo treatments and surgeries, I was attending school and trying to be kind of normal. I ended up missing 45 days of school my ninth grade year, but my teachers were understanding and incredibly helpful. My school was small and in a wonderful little community with caring people who offered lots of support. And we were really lucky to be able to go to ACH for treatment. It is a fantastic hospital.
I’ve been cancer free since 1990, though I’ve had some health issues likely related to my treatment and surgeries. Twenty-five years later, I have yet to meet anyone else who has been treated for dysgerminoma.
I went on to graduate high school with honors, graduate college with honors, get married, and give birth to two healthy children. To celebrate my 40th birthday, as well as 25 years since my diagnosis, I ran the Aramco Houston Half Marathon in January 2015.
My ovarian cancer story is unusual, but the gift of my story is that people remember it and listen a little harder because it is unusual. My hope is that sharing my story will spark an awareness of the disease that helps someone else catch their symptoms early and gives them a greater chance of survival.