At just 14 years old, during the height of the COVID-19 pandemic, Liliana “Lili” Casteneda thought she was experiencing her first menstrual cycle.
Instead, she endured severe daily bleeding, soaking through pads within minutes and feeling dizzy when standing.
Initially dismissed as stress-related, Casteneda persisted and was ultimately diagnosed with clear cell carcinoma, a rare vaginal cancer typically seen in women over 60.
A Rare Diagnosis in Adolescence
Clear cell carcinoma cells appear clear under a microscope and are exceptionally rare in teenagers. Casteneda’s doctor, Dr. Dario Roque, a gynecologic oncologist at Northwestern Medicine’s Lurie Cancer Center, said she was the youngest patient he had ever treated for the disease.
Aggressive Treatment Approach
Because Casteneda’s tumor was too large for surgery, doctors used:
- External beam radiation therapy
- Brachytherapy (internal radiation via radioactive implants)
- Chemotherapy
Radiation oncologist Dr. Jonathan Strauss explained that the tumor was about the size of a golf ball and required an intensive treatment plan.
Fortunately, Casteneda was born with Turner Syndrome, a genetic condition that causes infertility, allowing doctors to proceed aggressively without concern for fertility preservation.
Beating the Odds
By March 2021, Casteneda was declared cancer-free. Now 19, she is pursuing nursing studies, inspired by the healthcare team that treated her. Her doctors praised her resilience and dedication, noting how touched they were when she announced her plans to become a nurse.
Raising Awareness for Women’s Health
Casteneda now uses her story to raise awareness about gynecologic cancers, encouraging women to take symptoms seriously. Signs of clear cell carcinoma include:
- Abnormal or heavy bleeding
- Bleeding between periods or after menopause
- Pain or urinary problems
Her message: “If you feel like something is wrong, don’t hesitate and get it checked out.”
