"I'm a straight shooter," my doctor told me. I knew from then on that what she would say after that sentence would dramatically change my life forever. "I'm over 50% sure that this is cancer."
I'm a 22 year old girl with a great life. I have a bachelor's degree and am working on my master's degree. I have a job that I love and I have amazing friends. I eat whatever I want and I wear nice clothes. I like to go out and dance on the weekends, maybe have a drink every now and then. I've always been healthy. The most sick I've ever gotten was when I got mono at the age of 16. So when I started having pelvic pain, I didn't think anything of it. I always get monthly cramps before my period is due. Pain is normal for women and that is just something we have to deal with. Right...?
I began to have pelvic pain in the first week of March 2020. I've always had painful periods, but this was different. As the days went by, I started to recognize that these didn't feel like regular menstrual cramps. It was a mix of sharp, shooting pain and dull pain. But, it was as if my internal organs were on fire. There was a burning sensation that spread all the way up to the base of my ribcage. Whenever I had pain in the past, I would talk to my mom about it. After all, she's been around longer than me and would know what the pain was. Often times she would reply that the pain was normal. I would talk to my girl friends about the pain and everyone would chime in with their guesses based on personal experience. But all of their advice ended with the same sentiment. "Whatever it is, I'm sure you will be fine." When I called my mom this time after the pain had been continuing for about a week, she told me that I needed to schedule an appointment with student health. That scared me. I joked with her, "What if I have cancer?"
I had an appointment with student health for the following week on Friday the 13th. As the week went on while I was waiting for my appointment, I began to notice another symptom - extreme bloating. While this symptom tends to be temporary, it did not seem to go away. As the burning intensified, the bloating worsened. I also experienced some discharge. On the date of my pelvic exam, I reported these symptoms to the doctor. They performed a pelvic exam and diagnosed me with a yeast infection. This surprised me because I did not have any redness, swelling, irritation, or rash, which are the typical and most common symptoms that point to a yeast infection. I also questioned that the extreme pelvic pain I was feeling would explain this relatively simple diagnosis. Could a yeast infection provide pain that was as painful as this, spreading all the way up to my ribs, and lead to extreme bloating? The doctor explained that it could. They gave me a singular pill and sent me on my way.
Soon after this appointment, the state of Illinois went into lockdown. When I was unable to go back in to see the doctor when my symptoms did not go away, I had to rely on their virtual health system. While it was annoying to call in every day multiple times a day, they did a wonderful job at keeping in touch with me given the circumstances. They gave me the same treatment but for a longer duration. I began to urinate multiple times an hour, experience painful urination, and I developed a UTI during the time. The symptoms came back, so they diagnosed me with bacterial vaginosis. More antibiotics. Another UTI. More antibiotics. Pain came back. You get the cycle at this point.
A whole month had gone by with no relief. The pain got so bad that I became bed ridden. I was not able to stand up straight. Because I could barely walk, let alone stand, I would order takeout and have it delivered to my house for almost every meal. I had to start taking melatonin because I wouldn't be able to fall asleep from unbearable pain. I couldn't find a sleeping position that was comfortable. The bloating got so bad that I was unable to lay on my stomach. Come to find out, I gained 10 pounds during this month. The bloating was unlike anything I had experienced before, because my stomach was hard as if I was pregnant. Although there was no way I could be pregnant, I went out and bought a test anyways. When it came back negative, I turned to the internet. What could this possibly be? The doctors didn't seem to know what was going on. They would call me daily and record my symptoms. As they were tracking them, they seemed to be more confused as time went on. They finally agreed that phone calls would not suffice and in order for me to receive adequate treatment, they would have to make a special exception and bring me in for an in person visit.
When I came in mid April, I received another pelvic exam by a different doctor. They began pushing on my stomach and I yelled out in pain. They replied, "huh, that's weird," and went on with the exam. After hearing about all my symptoms, they decided to test my kidney function. Urine and blood samples were taken and I was yet again sent on my way with another antibiotic. I've officially lost count of the amount of meds they have put me on, but I am hopeful that it was the last course of antibiotics that I would have to take. I was wrong.
After my symptoms didn't go away, the doctor who had called me daily for the past month suggested I be transferred over to the department of gynecology and receive an ultrasound. Due to the virus, I was set up with a (yes, virtual) appointment with a new doctor. During this 10 minute call, they suspected that my pain was due to a ruptured cyst. This doctor did not think I would need the ultrasound and that the pain would go away. When I was still bedridden a week later, I had enough. The doctor who originally worked with me helped me get my ultrasound appointment scheduled.
On May 7th, I walked into the hospital for my ultrasound. As I was sitting in the waiting room, I overheard many women talking to each other about motherhood. They were asking each other about their due date, the sex of their child, if they have other children, and all of those other pleasant questions you ask. They all turned to me at the same time and asked, "What about you?" Their looks of discomfort and embarrassment sent me into laughter when I told them I was not expecting a child, but I sure do look like it and hopefully the doctors will figure out what's in my stomach.
I was eventually called back to begin my ultrasound. The ultrasound technician began their work. The first thing she said was, "Wow, that's a big cyst." Finally! I knew I wasn't crazy and that something was inside of me. She calmly told me she could not tell what ovary it was on, so she went to grab another technician to look with her. They were dead silent as they ran the device over my stomach and also internally for over 30 minutes taking numerous amounts of pictures. They would not answer my questions and the silence, along with the intimidating image in front of my face of my internal organs with a foreign object stuck on my ovary, was enough to make me have a panic attack. They said that although it is not normal protocol for the radiologist to come in and take their own pictures, they assumed that the doctor would want to take their own images. In walks the doctor. The three of them stared dead into the monitor for another 45 minutes as they took hundreds of images of my abdomen. The doctor stopped for a second, held the device in his hand, and turned to look me dead in the eyes for the first time and ask, "How old are you?" I was so freaked out I had them turn off the screen in front of me.
Finally when the ultrasound was completed, the doctor leaned against the wall and crossed their arms. They would not give me specifics, but described what was happening to me as a "fairly large mass" on one of my ovaries. I was told that it most likely is benign, because I am only 22 years old. Sometimes women my age can have "borderline tumors" that are not quite benign, but also not malignant. However, due to the size, it was going to have to come out. I begin to cry, because my worst fear up to this point was having to be cut open. I asked, "how big is the cyst?" To my surprise, the ultrasound technician looked at me and said, "do you REALLY wanna know...?" I had never been shot down by a health professional like that, as if I do not have a right to know what is going on with my body? Or, having a health professional assume that ignorance is pure bliss? The doctor kept telling me that they could not answer my questions because they "are just the radiologists, the imaging people. You will have to talk to your doctor about these questions." I'm sure they could answer those questions, they just didn't want to be the ones to deal with the repercussions of me knowing. They told me to get dressed, that I was free to go, and that I would be hearing from my doctor at a later date.
I was distraught. I was told the ultrasound would take no longer than 15 minutes. But, the appointment took an hour and a half. I had 3 professionals viewing my insides but none of them would point me to a direction where answers would be available to me. So I have this mass in my body, but no one can do anything about it right now? I felt alone and unseen. But, as I was reflecting on all of this, the door opened back up. The ultrasound technician asked me if I would like to speak to a doctor (as if that was a question that needed to be asked). Although it was not "my doctor," I could speak to one of their coworkers. This phrase was odd to me, because in my mind, I did not have a set doctor. I had been thrown around like a baseball during a triple play for the past 2 months. Whoever is available, they are my doctor. I just want answers.
I wait quite a long time to speak to this new doctor, but this time I received a bit more information. I asked this doctor how big my cyst was. They showed me the tape measure and how most cysts are about 2-3cm. Once they hit 3-4cm they must be removed surgically. Her finger kept moving down the tape measure. She stopped at the 21st cm mark and said "this is yours, about the size of a small basketball." They knew for sure that I was going to need surgery to remove the cyst, and not a laparoscopy. I would have to be cut completely open to remove the cyst in one whole piece. Because the cyst was so big, this doctor suggested that they call the top gynecological oncologist at the university to come over and look at my scan, but they told me, "it is NOT because you have cancer, but because this particular surgeon has ample amount of experience with more serious and complex surgeries like yours." I was also told that this surgeon will also be able to connect me with a doctor in Maryland due to their extensive network so that I could return home to my family and get the procedure done there.
I wait another exorbitant amount of time, but when the surgeon (my current oncologist) came in with knee-high high heel boots and put her hand on her hip as she introduced herself, I knew she meant business. She said she had heard about me and rushed over as soon as she could. She performed my third pelvic exam of the day, checked some other things, and then said she would be right back as she looked at the ultrasounds. But on her way out, she told me quickly that she did not think that the surgery could be done in Maryland but would explain why when she got back.
When she came back into the room, I wanted to be sure that I did not forget any information that was being relayed to me. She allowed me to have my mom on speaker phone as she told me the news. She began, "I'm a straight shooter."My mother was on the other side of the phone sobbing. My body went numb. My mind was running a mile a minute, but I knew I had to stay focused because my mom surely wasn't. This was the moment where I was pushed into adulthood. I asked her a ton of questions, most of those I can't even remember. But, the gist of it was that because my cyst was solid, she was concerned that it was malignant. There was also loose fluid in my pelvis that had not dissipated yet, which was another concern. The tumor seemed to be pushing on my urinary and GI tract, so there were concerns that it had spread. She ordered blood work and had me sign a surgical consent form. It was Thursday, May 7th and my surgery would be occurring ASAP, so we had to move quickly. I had no time to process the current state of my health at that point. But unfortunately, she could not give me enough concrete answers for me to even begin to attempt to understand what was happening. I consented to a potential full hysterectomy, the removal of some other organs, and the chance of infection after surgery leading to death. After I signed the paper with a shaky hand and the ugliest signature I've ever written to date, she sent me on my way with her final words being, "You are going to feel so much better when this thing is out."
I'm not entirely sure how I walked to the lab to get my blood drawn, then out of the hospital passing other folks that were there for routine checkups, stepping foot into my roommate's car as they picked me up, and into my room where I collapsed and cried (or tried to at least). About 5 hours later the results came back, with heightened tumor markers for 3 separate types of cancer. I was to come back to the hospital the next morning for more blood work, a CT scan, and a COVID-19 test. My mom rushed to pack up her things and traveled from DC to Chicago to meet me. We got a call that evening that my surgery date had been scheduled - May 11th at 7:30am.
I walked into the hospital at 5:30am and checked in. When I was called down to prepare for surgery, my mother was unable to go with me due to the new protocols put in place because of COVID-19. I was surrounded by nurses and doctors that were placing IVs in me, marking my body up, and talking me through the process. My surgeon walked in with high heel booties, excited to get the tumor out. I knew I was in good hands. I was handling things well until it hit 7:30am sharp. I cried for about 30 seconds when the nurses gave me permission to let it out. They held my hands, stoked my head, and cried with me. Then they put my "happy juice" into the IV and they wheeled me into the operating room.
That is the last thing I remember before waking up in post-op. When I realized surgery was over and done with, I frantically ask the nurse what time it was. I knew the longer the surgery, the worse news it was. I was informed that it was just after 11am - score! Then, I asked if my mom knew that I was okay. They gave me my phone so I could call her and show her that I made it through surgery great. She then uttered words I thought I would never hear... the doctors believe the tumor was benign. How could my doctor be wrong? She seemed so sure? But we had to wait until the final pathology came back before anything is confirmed. So that's what we did - wait.
I was in the recovery room for about 48 hours. I was alone with the exception of the nurses that came to give me my meds that barely worked. Regardless, it was peaceful. I spent all my time calling friends and family letting them know the good news (or so we thought). I was discharged Wednesday afternoon and was able to walk out of the hospital on my own without help.
I stayed at my apartment for about a week with my mom as my 8 inch scar that curved around my belly button healed enough to where I could sit in the car and travel for 12 hours back home to Maryland. When I arrived, I carried on as if things were normal. But about a week and a half after surgery, I got the results back from the pathology report. On a call with my surgeon and my parents listening in, I was diagnosed with a rare form of ovarian cancer called a germ cell tumor. Specifically, an immature teratoma, grade 3, stage 1A. It was completely contained, there was no spreading, but it could come back. At this time, I will need no further treatment. However, because the tumor is grade 3 (meaning that it spreads the quickest and is the most likely to come back), I will be needing monthly bloodwork and CT scans every 4 months. Over time, the bloodwork and the scans will be less frequent. But, this will be something that follows me for the rest of my life.
This is hardly the end of my story, but this is where I will end for now. In the meantime, I want to say thank you. My family helped me stay strong and optimistic throughout this journey. Thank you. My friends gave me their shoulder to cry on whenever I needed it. Thank you. My doctors gave me a sense of hope and security. Thank you. With a cancer as rare as mine (less than 1000 women each year are diagnosed with ovarian cancer - but my type of cancer is even MORE rare), I will be helping further medical research and offer up new data that can improve treatment for the women who come after me. With this surreal experience, I have grown in more ways than I could have even imagined possible and look forward to how I continue to evolve. And with that, I say to cancer... Thank you.
