Before I was diagnosed with advanced stage ovarian ependymoma, in 2025, when I was just 22, I didn’t know anything about cancer. I knew a few older adults who had had cancer, but that was the extent of my knowledge about the disease. Even to this day, I’m not sure I’ve completely wrapped my head around what it actually means to have cancer, especially one that is so exceedingly rare there have only been between 40 and 50 cases of the disease documented in global medical literature.1
I began having symptoms of the cancer a year after undergoing bariatric surgery, in 2023, when I noticed that my stomach had become distended and hard to the touch. A few months later, I began experiencing a heaviness in my abdomen and pain so severe, I vividly remember telling my mom and dad that we needed to go to the emergency department to find out what was causing me such distress.
At just 22, I should have been in the healthiest prime of my life, with the prospect of many years ahead. Instead, I was facing a rare, advanced cancer that jeopardized not only my hopes for a future family, but my very life.— AINSLEY COLE
Tweet this quote
While at the hospital, I was examined by a clinician who then ordered a computed tomography scan of my abdomen. The imaging test showed a mass so large it consumed my entire left ovary and overlapped part of my colon.
An oncologist I later met with told me I had two options: I could have a small tissue sample of the mass biopsied to examine it for cancer or he could remove my ovary and part of my colon immediately. I opted for the latter. The results from the pathology report confirmed stage IV ovarian ependymoma.
Facing an Uncertain Future
At just 22, I should have been in the healthiest prime of my life, with the prospect of many years ahead. Instead, I was facing a rare, advanced cancer that jeopardized not only my hopes for a future family, but my very life.
After switching my care to Moffitt Cancer Center in Tampa, Florida, my oncologist met with other specialists at the institution to determine the next steps in my treatment. Because I had some residual disease involving the surface of several organs, including my colon and pelvis, and further surgery to those organs could mean the possibility of a colostomy and the loss of my remaining gynecologic organs, rendering me infertile, my medical team recommended a fertility-sparing treatment approach.
Although the exact histogenesis of the ovarian ependymoma was never determined due to the rarity of the cancer, my oncology team prescribed a standard-of-care chemotherapy regimen in the treatment of germ cell tumors. The protocol included bleomycin, etoposide, and cisplatin (BEP), which I tolerated fairly well. I’m currently receiving leuprolide acetate maintenance for hormonal deprivation, and I’m closely monitored for new symptoms with periodic examinations and imaging scans.
Finding Joy
Even though I’ve resumed my normal activities, including attending classes in pastoral and spiritual care at Southwestern University, I worry that cancer has already robbed me of many future goals, including having children. For as long as I can remember, having children was always one of my top priorities. But now I’m facing the possibility of additional surgery to curb the spread of the cancer, including a complete hysterectomy and a colostomy.
Still, I’m comforted by two elements that mean the most to me: my faith and my family, which have helped me get through the challenges of the last 2 years.
During my diagnosis and treatment, and now in recovery, I never lost my faith, and no matter how many obstacles I’ve had to overcome during this time, I’ve always been able to find joy in each precious moment.
Being in a Good Place
Despite the hardships and struggles I’ve had to face since my cancer diagnosis, I’m so grateful for all the amazing people that have come into my life and that have helped me through this journey, including my wonderful oncology team, who have given me their unending support and who have allowed me to be a full participant in my care. I’m also thankful for the never-ending support and love I receive from my family every day.
Having cancer has definitely altered the course of my life, and I don’t yet know how it will impact my future goals. But I continue to move forward with joy, faith, and hope. I’m in a good place.
Ainsley Cole, 23, is a student at Southeastern University and lives in Clearwater, Florida.
Editor’s Note: Columns in the Patient’s Corner are based solely on information The ASCO Post received from patients and should be considered anecdotal.
REFERENCE
1. Yuan Z, Yu M, Chen Yu: Individualized treatment for a case of recurrent ovarian ependymoma. Onco Targets Ther 12:113-117, 2018.
