Lindsey Spencer, Honolulu

August 2021

In May 2014, at the age of 28, I was diagnosed with ovarian cancer. At the time, I was a post-baccalaureate student at the University of Hawaii at Manoa working toward getting my teaching certification in secondary education with a focus in Earth Science. I was also working part-time as a support role for a program based in the School of Education. My overall health was relatively good, with no history of any previous health issues. Prior to being diagnosed, I had no knowledge regarding ovarian cancer, its symptoms, or risk factors. There was also no other member of my immediate or extended family that had been diagnosed with ovarian, or any other type of gynecologic cancer.

Prior to being diagnosed, I experienced a range of symptoms that included prolonged bloating, constipation, loss of appetite, tightness in my chest, difficulty breathing, and sharp throbbing, consistent pain in my lower left abdomen. All of these symptoms lasted for a period of three weeks before I inevitably underwent surgery. Initial symptoms in the first week were sudden and prolonged bloating accompanied with constipation. In the second week, I began to experience a loss of appetite in addition to the already present bloating and constipation. The third week brought on a tightness in my chest, and difficulty breathing, which also affected my energy level and mobility. About three days prior to having surgery I began to experience pain in my lower left abdomen. It started out as dull and consistent, but bearable. Then about two days after it started, I woke up early in the morning to a sharp pain where the dull pain had begun. It was at this time that I decided I needed to take another trip back to the emergency room.

Within those three weeks of being symptomatic, I was seen by four different physicians that included an urgent care physician, hospital emergency department (ED) physician (twice), and a hospital clinic physician (in between ED visits). Despite getting opinions from four different doctors, there was no major diagnosis made during the time that I was experiencing symptoms. I was misdiagnosed with severe constipation twice before the real cause for my symptoms was determined. Also within that time, many tests were administered in order to determine what was going on. The test that I received the most was for pregnancy. I received seven separate tests leading up to the day of emergency surgery. Bloodwork was the next major factor, and included standard tests like CBC, CMP, and pregnancy (as mentioned above). No test for CA-125, or any other protein marker, was included. Chest and abdominal x-rays were given the least. It was not until my second trip to the ED that a doctor decided to order a CT scan, as well as abdominal and transvaginal ultrasounds. The CT scan was what ultimately determined that an ovarian tumor was the cause. It should also be noted that I did undergo a PET scan post-diagnosis, as requested by my gynecologic oncologist.

My surgery was performed by my regular OB/GYN, and involved the removal of my ovarian tumor, left ovary, and left fallopian tube, and seven liters of fluid that had accumulated in my body. She also brought in a gynecologic oncologist as a consultant for the surgery. My subsequent treatment was managed by the same gynecologic oncologist that was present at my surgery and his team which included a nurse practitioner, a pharmacist specialized in chemotherapy treatment, and five oncology nurses.

On the last day of post-op treatment in the hospital, my OB/GYN called my room to give me a summary of the pathology results of my tumor. I was told that the pathology results determined that my tumor was indeed malignant, and that it was a yolk sac, or germ cell, tumor. She then explained to me that because my tumor had ruptured, and fluid spread throughout my abdominal and thoracic cavity, that chemotherapy was needed to ensure that no cancer cells would be left behind. It was not until my first face-to-face visit with my oncologist (about 1.5-2 weeks later) that I was officially diagnosed with ovarian cancer stage 1C. There is nothing that I would have liked my doctors to do differently. At the time of diagnosis and initial treatment, my OB/GYN and oncologist took the time to explain the situation and course of action required for treatment in a way that I could understand with very little confusion. I often attribute the high quality of communication between my medical team as one of the reasons for the success of my treatment.

After that first conversation with my OB/GYN about making arrangements to undergo chemotherapy treatment, I was upset, and broke down for a while. It was mostly because at the time, “cancer” was a scary word. I quickly realized, as I broke the news to each member of my family individually, that I needed to be strong and positive so that they too could be positive as we prepared to go through my treatment as a family. Negative energy is extremely contagious, and my positive outlook and attitude throughout treatment is another factor that I attribute my successful treatment with.

After recovering from surgery, I immediately began chemotherapy treatment. I was given the BEP regimen that consisted of the drugs Bleomycin, Etoposide, and Cisplatin. I received a total of four cycles of this regimen over a period of just over 3 months, and it was brutal. After receiving my last dose of chemotherapy drugs, I received an additional month and a half of infusion treatment to help my immune system regain strength, and to also help with electrolyte retention. All throughout the main portion of my treatment I had a consistently low level of magnesium, and sometimes potassium. I also received daily shots of Neupogen to help boost my white blood cell count in order to keep my immune system well enough to keep me on schedule with my chemotherapy regimen.

During the course of my treatment I experienced nausea, diarrhea, mouth sores, blistering on my skin (mostly hands and feet), hair loss (began after completion of first cycle), and peripheral neuropathy (hands, feet, and lower legs).

Treatment had a dramatic effect on my life. I put everything on hold so that I could focus on myself, go through treatment, and get healthy again. I quit my job, stopped taking classes, and allowed only certain people to physically interact with me. I didn’t know it at the time, but it was practice for the pandemic. I created a bubble that included only my immediate family and close family friends so that my exposure to germs and other risks were reduced. As for my family, they acted like a buffer between me and the rest of the world. They were extremely supportive, and with me every step of the way. Having that supportive network really helped me to focus on myself, and allowed me to heal in a positive environment. Lastly, even though the type of ovarian cancer that I had is not that common, I did not need to participate in a clinical trial, or seek alternative treatment.

The only obstacle to healthcare access that I encountered occurred at the very first visit that I took to the urgent care center. That particular facility did not accept my health insurance as one of their partners, and in order to receive treatment I had to pay out-of-pocket for any services that I received. The doctor that examined me gave the recommendation that I get an x-ray, CT scan, and bloodwork done at the emergency room. Even though that facility had all of those capabilities, we would have to pay for each one, which was why we decided to decline services at the urgent care center, and go to the emergency room instead. The examination by the physician was the only charge which was out-of-pocket.

As of today, I have had no recurrence of ovarian cancer since completing my chemotherapy treatment. On September 10, 2014, I was determined to be cancer-free, and have been ever since.

My life post-cancer has changed completely. Nine months after completing treatment I found out that I was pregnant with my first child, and in March of 2016 I gave birth to my son. He is now five years-old, and will be starting kindergarten next week! After giving birth, I spent two years at home raising my son. Going through my own health experience inspired me to change careers, and go into healthcare. So when my son started preschool, I also went back to school.

Even after more than five years of being cancer-free, I still have some lingering side effects from the treatment. I still experience some neuropathy, but now it is only limited to the bottom of both of my feet. It’s not nearly as bad as it used to be, but still affects me every day. The other side effect that I constantly struggle with is the food sensitivity to all types of seafood that I developed post-treatment. I unknowingly became allergic to CT contrast dye, which was confirmed during post-chemotherapy CT scan. Immediately after I completed the scan, I went into anaphylactic shock, and was hospitalized for the next 24 hours. Over time, I have discovered that I’m also allergic/sensitive to some medications that I can no longer take.

As of today, things are going well. Life is crazy busy, but going well. I have been balancing mom life, school, and now wedding planning. My fiancé and I had to put a lot of things on hold when I got sick. So now that life has calmed down, we’re finally able to plan our wedding, which will be taking place in December of this year. My family’s new normal has pretty much gone back to what it used to be, with the exception that we are all more health-conscious. Going through cancer together was an education for myself, my family, and my friends. It has made us more aware of ourselves, and how to take care of others, both physically and mentally. Cancer changed all of our lives, but for the better. It brought us closer, gave us perspective, and taught us how fragile life is.