Last Spring (2015), just a couple weeks after my twenty-fourth birthday, I started experiencing abdominal discomfort and bloating. Assuming it was just constipation I initially ignored it, waiting for the issue to resolve itself on its own. What’s funny now in retrospect was that I had actually Googled my symptoms and saw the possibilities as either being lactose intolerance, constipation or (much less likely) ovarian cancer. “Ovarian cancer?!” I thought. I immediately dismissed this as being hypochondriacal.
After a week or so, the discomfort was transitioning to pain in my lower back and could no longer be ignored so I finally decided to visit urgent care. After a brief pelvic examination, the doctor determined there was definitely something wrong and immediately referred me to the ultrasound department that same day. The ultrasound revealed a giant mass (20.1 x 11.4 x 15.5 cm) on one of my ovaries. The mass was so huge they mistakenly thought it was my right ovary when in reality it turned out to be my left.
Two weeks later on April 21, I underwent surgery where they removed 2 liters of fluid (no wonder I felt so bloated) along with my left ovary and fallopian tube. The inter-operative pathology came back ostensibly benign, however just one week later, I received a phone call that more extensive pathology showed that the tumor was actually a malignant, grade 1-2 immature teratoma tumor and my ob/gyn advised that I would “probably need another surgery” and “probably need chemo”. At the time, the most devastating part was having to drop all of my spring classes knowing I was a mere three terms from graduating.
On May 7, two weeks after the first surgery, I had my staging surgery to determine whether or not the cancer had spread to other regions of my body. This one was done laparoscopically – five incisions each less than an inch long horizontally above my belly button. I was told that this surgery would be a quicker recovery time and much easier than the first and, though I left the hospital just a few hours after waking up, I ended up suffering from mild nerve damage in my left leg (I was told there is a bundle of nerves in your abdomen that correspond to your legs and that this is not uncommon), and was extremely sore and swollen for longer than I expected.
Immature teratoma (IT) is such an exceptionally rare disease that even the gynecological oncologists have to dust off the medical journals to figure it out, and there is not a 100% agreed upon consensus on what to do. Many doctors recommend that in the case of grade 1, stage 1 IT the patient just be put on a “wait and watch” observation after removal of the tumor rather than undergo chemotherapy treatment. I did hours and hours of research into this obscure disease and after learning this asked that I get a second opinion since my IT grade was on the cusp of being grade 1 and therefore had a chance of not requiring chemo. Unfortunately, the second opinion came back even higher than the first (grade 2-3) so there was really no other option.
The “bright side” to my type of cancer is that it is very treatable and both of the oncologists I met with kept using the word “curable.” You would think this would somehow magically make me feel better, and it certainly does now that everything is said and done, but at the time I did not find as much comfort in that word. I felt that since the Oncs saw my positive outcome as “in the bag” they took my concerns slightly less seriously. I kept being told that I would be fine and the worst part would be that I’d lose my hair. Though they were ultimately correct, when you’re in the midst of all this foreign jargon and medicine your fears are daunting, to say the least.
Leading up to treatment I did even more research, joined a Facebook group of other germ cell ovarian cancer survivors, and even went so far as to make a website (immatureteratoma.com) to truncate my learning in the hopes it might serve as a tool for other IT survivors and a form of catharsis for myself. Since I wasn’t going to school or working at this point, I needed some form of busywork to keep myself occupied. I ended up finding the research and website extremely helpful in maintaining some sense of control in having that knowledge.
June 8, I began chemo treatment. Immature teratoma requires a slightly different approach in terms of chemo compared to other ovarian cancers. Most of my focus was on researching my specific chemo regimen – bleomycin, etoposide and cisplatin (BEP) – so I’m not as familiar with the other kinds, but from what I understand, BEP is shorter in overall duration but a bit harsher in intensity. I had three rounds and each round was three weeks. I went Monday through Friday for five or so hours a day the first week, then Tuesday for one hour the following two weeks.
I finished all three rounds August 11 and have been doing three month check ups since. Pure immature teratoma tumors do not typically have any tumor markers, though sometimes Alpha-Fetoprotein AFP is used. However, unfortunate in my case, since the doctors didn’t suspect cancer at the time of initial diagnosis and before removal of the cyst, I never had the proper blood work done to establish that baseline.
Despite this remote concern of not being able to detect tumor markers, things are looking up for me now almost ten months post-treatment. I graduate from Portland State University this June for my Bachelors of Science in Economics, and have been working at a public relations firm in downtown Portland for almost eight months. When I’m not at school or working, I help out my grandfather with the family business, read, write, practice yoga and go on hikes.