Advocate Spotlight: Catherine
AdvancedOvarianCancer.net shares the stories and experiences of people living with ovarian cancer. We are highlighting the story of our advocate Catherine who was diagnosed with ovarian cancer at 22 years old. Following Catherine's diagnosis, she was determined to tell her story and support others living with the same diagnosis.
This is Catherine's story...
Catherine's diagnosis story
On May 7th, 2020, I went to the hospital for an ultrasound after 2 months of in-person and mostly virtual doctor's appointments to address my abdominal pain and bloating. They found a 21cm mass on my right ovary. On May 11th, I underwent surgery to remove the tumor along with my right ovary and fallopian tube. The tumor was filled with bone, hair, and fluid. Later that month, the pathology confirmed my diagnosis of ovarian cancer. Specifically, the tumor was an immature teratoma (a type of germ cell tumor) grade III, stage 1a.
While immature teratomas typically occur in women 18 and under, I was 22 years old at the time of my diagnosis. While the cancer was caught at the earliest stage where there was no spreading, it received the highest grade. Grade 3 means that the cells look the most complicated under a microscope and it has the highest chance of recurrence.
Treatment decisions and experiences
Because my tumor was so big and complex, my oncologist removed my right ovary and fallopian tube. During the surgery, the tumor was removed without any breakage and no malignant free fluid was found during the pelvic washing. As such, my oncologist did not recommend any further treatment besides the initial surgery. My current maintenance regimen is bloodwork, CT scans, and pelvic exams every 3-4 months.
Finding someone who will listen and support you
I would highly recommend getting a therapist. Not only do we have to process our own emotions, but we also feel varying degrees of pressure to help our families and friends process the experience. That is not our baggage to carry! Getting a therapist who comes from a neutral position can help you explore all of your thoughts and emotions around the experience without feeling you are burdening someone who is close to the source.
In addition, information about fertility options (especially as a young ovarian cancer patient) was helpful for me to visualize what my life will be like in the future. It can feel impossible to think about the future during an immediate crisis. But, having that support and opportunity to weigh your options about egg freezing, adoption, hysterectomy, etc. can give you the hope and agency that you need to get through treatment.
Word of advice to those newly diagnosed
One thing I wish I did not do was look at the research. There is a lot of information out there and when in crisis, we tend to catastrophize our situation and jump to the most negative conclusion. Asking your doctor about the research is the best way to get accurate and hopeful information for your specific case.
But if you are not fully comfortable with an oncologist’s approach or management of your case, get a second opinion. It can never hurt to have multiple experts take a look and collaborate on best treatment regimens.
Advocacy is about supporting women's health
To me, being an advocate means supporting women throughout the process and even before it starts. My goal is to help women learn the signs of ovarian cancer and to be aware of their body. I am also passionate about ensuring women get the medical care they so deeply deserve and have been shorted for years. I was invalidated for months in regards to my pain and I know many other women go through many more months and even years of agony before getting an answer.
Prevention, awareness, and persistence is what I hope to share with and instill in our community.
Something you may not know about me
I was a competitive dancer my whole entire childhood. I trained in many styles including but not limited to ballet, tap, jazz, contemporary, lyrical, hip-hop, musical theater, and modern. I was also a member of a pre-professional tap company. In addition to competing, I became a dance teacher at the ripe age of 14 specializing in ballet and tap. I hope to incorporate my dance training into my clinical work as a therapist in the future.
What stage were you diagnosed with?