A 37-year-old woman shares signs of rare giant cell tumor that was eating her bone

A persistent pain in her leg led to a delayed diagnosis

Ashley Christine knew something was seriously wrong last fall when the pain in her leg grew so bad that she couldn’t walk. But she was met with a lack of urgency as she tried to schedule an MRI, and later, an appointment with an oncologist in Los Angeles, where she lives.

Initial symptoms

Ashley’s pain started in the beginning of October.

“If I stood it would be a sharp pain. If I was laying down, it would be dull, throbbing,” she said, adding that it spanned all the way from her ankle to her knee.

Initially, a doctor said she must just have a torn ligament and recommended physical therapy. Ashley, though, was sure that something was “really wrong” and asked for an MRI instead.

Delays in diagnosis

Unfortunately, the soonest MRI appointment she could get was a month away, so Ashley had no choice but to try to get on with her life in the meantime.

But on a trip to Portugal over Thanksgiving, she tripped — and suddenly, the pain was worse.

“I was convinced my leg was broken,” she said. “I really couldn’t walk.” But she also felt sure it was probably worse than a broken bone.

“I do skiing, snowboarding, rock climbing, and I’ve done some pretty gnarly damage to my body from those activities, so I’m pretty familiar with what a broken bone feels like. I’m like, it’s close, but it’s not quite,” she recalled.

Diagnosis and treatment

Doctors in Portugal were no help, also insisting she’d have to wait ages for an MRI, the test she felt most confident would give her answers about her ailment.

Once she got back home to LA — using a wheelchair in the airport — she finally got her MRI in mid-December.

The results were startling: A massive tumor, plain as day, was growing inside her leg.

But even though she got to see the scan, she had to do battle to get anyone to explain it to her — and to learn about the next steps she needed to take for her health.

In fact, her oncologist’s office said she’d need to wait over a month to see him, telling her she couldn’t get an appointment until the end of January.

“I’m like, “Oh, cool. So you want me to walk around with a tumor my leg for a month and a half?” she said. “I didn’t want to lose my leg, because it was, like, eating my bone. I could feel it.”

Ashley said she was “freaking out” because she “basically waited a month to find out if I had cancer.”

Through tears, she managed to get the oncologist’s office to squeeze her in before Christmas.

That’s when everyone finally started to take her seriously. Looking at the scan, the doctor told her he believed she had a “very big” giant cell tumor.

“He said, ‘Yeah, it’s pretty rare, but when we find one, they’re massive. We got to get this out,’” Ashley said. “It was basically eating my bone and compromising my tibia, and it will keep growing and growing and growing. It doesn’t stop.”

Recovery and awareness

Giant cell tumors are literally a one-in-a-million disease: According to the American Academy of Orthopaedic Surgeons, they only occur in about one in 1 million people.

Though they’re noncancerous, they’re very aggressive and continue to grow without treatment. They’re most common in legs, near the knee joint, and can also destroy the surrounding bones.

Finally, on Jan. 13 — over two months after her pain began and a month before she was initially told she could meet with an oncologist — Ashley underwent a two-hour surgery to remove the tumor.

The surgeon also used cement to fill in the cracks in her bone that the tumor had caused.

Now Ashley’s recovering and will continue to need checkups for the rest of her life lest a new giant cell tumor pops up.

Though she’s grateful that it was taken care of — and a big fan of her oncologist — she’s still frustrated that it took her so long to get the medical appointments she needed, even though she was certain there was something very wrong.

“I had a lung disease in college, which is how I learned how to be very proactive about this stuff,” she said. “When this whole thing happened, I was very adamant about calling and just being all over it. And then I realized how many people don’t know to do that.”

That realization inspired Ashley, a mathematician who educates people about STEM, to post about her health on TikTok — where a video about her tumor has racked up nearly three million views.

“People need to know that they have to be very aggressive, unfortunately, because someone’s always stopping you, whether it’s the doctors, the nurses, admin, billing, the insurance company — like half of them are going to be standing in your way,” she said.

“You have to call everybody and to really fight for it.”

Conclusion

Ashley’s story serves as a reminder of the importance of being proactive in seeking medical attention and advocating for oneself. Her experience highlights the need for patients to be persistent and push for answers, even in the face of delays and setbacks.

FAQs

Q: What is a giant cell tumor?

A: A giant cell tumor is a rare, noncancerous growth that can occur in the bones, typically in the legs near the knee joint. It is characterized by the growth of abnormal cells that can cause pain, swelling, and limited mobility.

Q: How common are giant cell tumors?

A: Giant cell tumors are extremely rare, occurring in about one in 1 million people.

Q: What are the symptoms of a giant cell tumor?

A: Symptoms of a giant cell tumor can include pain, swelling, and limited mobility in the affected area. In some cases, patients may experience numbness, tingling, or weakness in the affected limb.

Q: How is a giant cell tumor treated?

A: Treatment for a giant cell tumor typically involves surgical removal of the tumor. In some cases, radiation therapy may also be used to help shrink the tumor before surgery.