Teen battles rare vaginal cancer usually found in older women

Being 14 is hard enough, let alone in the middle of a public health crisis.

So when Liliana “Lili” Castaneda began experiencing strange symptoms in the spring of 2020, her local doctor chalked it up to “pandemic stress.”

But things only got worse — and it wasn’t all in her head.

As it turned out, the Chicago teen was suffering from a rare vaginal cancer almost never seen in girls her age.

“Most of my patients are in their 60s,” said Dr. Dario Roque, a gynecologic oncologist at Northwestern Medicine’s Lurie Cancer Center, who treated Castaneda.

It would be months of pain, confusion and unanswered questions before she finally got the diagnosis that saved her life.

A teen’s search for answers

Castaneda woke up on her 14th birthday to a splotch of red in her underwear.

“I was happy at first because I thought it was my period,” she told The Post.

The eighth grader had never had one before. She was born with Turner’s syndrome, a genetic disorder that causes underdeveloped ovaries, infertility, delayed puberty and, often, the absence of menstruation.

Seeing the blood, she said, gave her a small flicker of “hope.”

But the bleeding didn’t stop, and days stretched into weeks.

“It just continued and got heavier,” Castaneda recalled.

At its worst, she was soaking through a menstrual pad every 10 to 15 minutes, overcome by waves of dizziness whenever she stood up.

“At that point, I was anemic,” Castaneda said. “I was very tired, had no energy.”

Her doctor said the bleeding was likely linked to the emotional toll of the pandemic — with school having moved online and her father recently testing positive for Covid-19.

But Castaneda couldn’t shake the feeling that something more serious was going on.

“It couldn’t just be stress,” she remembered thinking. “It felt like it had to be something more.”

Castaneda’s doctor told her to call back in a week if the symptoms continued. When she did, the young teen was prescribed birth control to help stop the bleeding.

“It lowered it, but the bleeding didn’t go away completely,” she said. “I was worried, scared, nervous.”

The spotting dragged on for five more months.

Her doctor ran tests but found no answers. Then, during an ultrasound, something showed up inside her vaginal tract, and the physician asked if she had possibly left a tampon in.

“I didn’t even use tampons,” Castaneda said.

She was referred to a specialist, who performed a pelvic exam and took a biopsy of her vaginal lining.

Shortly after, Castaneda was diagnosed with clear cell carcinoma of the vagina — a rare form of cancer usually found in the reproductive systems of postmenopausal women.

Signs of the disease can include abnormal bleeding between periods or after menopause, as well as pain and urinary issues, according to Northwestern.

“It was shocking,” Castaneda said. “I was scared, but I was more relieved I had answers.”

Unfortunately, the challenges weren’t over. Because her cancer wasn’t considered pediatric, Chicago-area children’s hospitals wouldn’t accept her. She also needed a provider who could communicate with her Spanish-speaking parents.

Eventually, Castaneda landed at Northwestern under the care of Roque.

“In my 15 years of practicing medicine, she’s the youngest patient I’ve treated for clear cell carcinoma,” he said.

From patient to nurse

The tumor on Castaneda’s cervix was roughly the size of a golf ball, according to Dr. Jonathan Strauss, her radiation oncologist at the Lurie Cancer Center.

“At the time of her diagnosis, the tumor was too large for us to surgically remove it, so we had to use external and internal radiation therapies to help shrink it,” he explained. “It took a lot of radiation to get rid of her tumor, along with chemotherapy.”

Fortunately, the bleeding that Castaneda had experienced for months stopped after the first round of treatment.

In total, Castaneda endured 30 rounds of radiation and five rounds of chemo — with Taylor Swift playing in her headphones throughout.

She was officially declared cancer-free in March 2021, nearly a year after the bleeding began.

“I was so relieved,” Castaneda said. “I was grateful. I was excited.”

Now 19, Castaneda is in college studying nursing, inspired by the medical team that helped save her life.

“I can’t wait to become a nurse and help other kids navigate their medical journey,” she said. 

Castaneda is also on a mission to spread awareness about the signs of clear cell carcinoma — and to empower women to speak up when something feels wrong.

“Don’t be ashamed,” she said. “Never brush anything off. Just get it checked.”