Christina Kosyla knows her body. The self-described healthiest person she knew, Kosyla taught yoga, stayed active—she even hiked the 500-mile Camino de Santiago spiritual pilgrimage from France to Spain.

So when she first felt a tinge of pain in her shoulder in 2017, she knew something was wrong, and she was right. Kosyla was eventually diagnosed with a desmoid tumor that next year. But that diagnosis came after months of self-advocacy and fighting for her medical rights.

At first, Kosyla chalked the pain up to handstands and other advanced yoga poses. She saw a physical therapist who thought it was an impinged nerve. A coworker at Stuart Country Day School, though, noticed some swelling on Kosyla’s collarbone and encouraged her to get it checked out.

All of this started a few months before that Camino de Santiago journey, and she started to get nervous. She saw one more doctor before she left and was told she had a lipoma—a lump under the skin—and that she could safely continue on with her trip. They would go ahead with surgery when Kosyla, a Bordentown resident, came back.

“The trip was incredible,” she said. “It was the the adventure of a lifetime.”

Her surgery went on as scheduled when she returned, but the results were anything but immediate.

“After the surgery, we went through the typical ‘How’d it go, doc?’ kind of thing,” she said. “And the surgeon said ‘It was confusing.’ That’s not what you want to hear when someone has cut you open.”

The doctor, Kosyla said, did not find a lipoma. He dug around and took some tissue samples, but still, nothing.

Christina Kosyla has lived with a rare desmoid tumor for the last three years.

And that’s when her journey really began.

“I bounced around from doctor to doctor trying to find someone who would take me seriously,” she said. “I think I had five misdiagnoses from seven different doctors.”

Finally, she ended up at UPenn, where she saw a thoracic surgeon. He took a look at the tissue samples, sent them to some colleagues and confirmed his suspicions: it was a sarcoma.

“That word threw my world upside down,” she said.

Another biopsy at UPenn confirmed that the tissue they sampled was the same tissue from her first surgery—meaning it was missed the first time around. And, since sarcomas “don’t like to be touched,” Kosyla, 31, said, it tripled in size from September of 2017 to January of 2018, from 3 cm. to 9 cm.

It was a relief to finally know what was plaguing her. But the process was excruciating, and it’s an all-too-common experience for women seeking medical care.

“There are so many statistics that show women, and especially women of color, not being believed when they’re in pain,” she said. “I was met with a healthy dose of misogyny early on. One doctor sent me a letter asking to speak to my father or my imaginary husband. When I went to the orthopedic surgeon’s office and he told me I just needed physical therapy, I burst into tears. When he asked why I was crying, I said ‘Something’s wrong with my body, and nobody believes me.’”

In fact, it was Kosyla’s primary care doctor—a woman—who encouraged her to seek help at the university level. She was the first physician who really believed what she was saying.

“When the doctor said ‘sarcoma,’ it was the scariest feeling but also the most validating,” Kosyla said. “I’d known all along that something was wrong, but it kept getting written off. I really had to convince people to listen to me. And what I’ve encountered meeting other patients is that they’ve had a similar journey.”

Desmoid tumors are rare—about 900 are diagnosed in the United States each year. Though they are technically benign, they are locally very aggressive and are treated the same way typical cancers are.

She started with oral chemotherapy, which slowed the growth of the tumor but wreaked havoc on her body—extreme nausea, fatigue. She tried another medication, but that had similar effects, so she stopped it after two weeks. Finally, an intravenous chemotherapy treatment led to nearly 2 cm. of shrinkage, but that is no longer an option because of heart issues that can occur after extended use.

Now, it’s just about managing the size,” she said. “I’m just looking for a drug option that will allow me to live normally.”

Her doctors also pitched surgery at the beginning, though it was not a recommended course of action because of the lifelong side effects: it would include the removal of her clavicle, three ribs and part of her breastbone, as well as possible nerve damage and breast reconstruction.

“That was a pretty hard pill to swallow, losing all of those things and mobility for the rest of my life,” she said. “And even after all that, it could still come back…I’ve seen folks with amputations, and then the tumor grows back above the lost limb. As rare as these things are, it doesn’t make them any less devastating.”

That’s why Kosyla has thrust herself into the desmoid tumor community. She writes a blog, Girl Meets Cancer, and posts regular updates on social media (@girlmeetscancer on Instagram). She participates in the Desmoid Tumor Research Foundation Running for Answers 5K in Philadelphia, and she and her team have raised $32,000 for the organization over the last two years.

“If I had known about the DTRF, I might have been more proactive early on when my general surgeon didn’t want to do a biopsy,” she said. “My story might have been different.”

But it’s still her story, and Kosyla is not afraid to tell it, especially during the COVID era.

“COVID has really had an impact on the lives of those with chronic illness,” she said. “I’m often told ‘You don’t look sick,’ but whether you look it or not, you can be immunocompromised. I tell people that I’m the one you’re wearing a mask for. I’m the one you’re social distancing for. And I’ve been so grateful in the Bordentown community to find others who are so supportive. I’m grateful for my neighbors. If they see me walking down the street, they make sure their mask is on, and they ask me how I’m doing. That sense of small-town community is a great feeling.”