16-year-old Feels Lump the Size of a Ping-Pong Ball in Her Breast — but It Wasn't Breast Cancer (Exclusive)

Addison Rowan was captain of her high school volleyball team when she was diagnosed with a rare kind of cancer in her left breast

Rowan Addison was 11 when she first noticed a small lump in her left breast. “I showed my mom,” she tells PEOPLE exclusively. At her next checkup, she and her mom mentioned the pea-sized mass to the pediatrician, who said it was likely related to puberty.

“It wasn’t a huge concern,” the Henderson, North Carolina, native remembers. “I just ignored it. And I was also scared because I automatically thought the worst. A part of me didn't even want to get it checked out.”

By ninth grade, the lump had grown to the size of a grape. Rowan got an ultrasound and was told that there was nothing to worry about — but if it got bigger she should come back and they could talk about removing it.

“I just started to ignore it again,” she says. But the summer before her junior year of high school, she noticed that the lump had nearly doubled. It was almost the size of a ping-pong ball. And the skin around it was starting to pinch in.

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The volleyball team captain was referred to Duke University Hospital for a biopsy in September 2021. There, she was told there was less than a 1% chance that it was cancer.

“The doctor said, 'I'm not promising anything, but you're so young.' He's like, ‘You're 16. It's a very slim chance that this is going to be cancerous. It's probably a fibroadenoma benign tumor situation,’” she says.

A week later, on September 27, 2021, she came home from her volleyball game and found her parents crying.

They told her she had cancer.

“I immediately started freaking out,” she says. “I just froze. I probably didn't speak for 20 minutes. I was just so shocked.”

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Rowan was diagnosed with alveolar soft part sarcoma, a very rare, slow-growing, malignant sarcoma that usually starts in the legs or arms, sometimes the neck.

“They were really shocked that it was in my breast,” Rowan remembers. Doctors told her she was the second medically reported case in history (and the other case was an older woman).

This is a rare form of a rare sarcoma, her surgical oncologist Dr. Laura Rosenberger, associate professor of surgery at Duke University Hospital, tells PEOPLE.

“This would not be considered a 'breast cancer.' This is a sarcoma, and sarcomas are soft tissue tumors. They can come from bone, muscle, fat, connective tissue, and they can happen anywhere in the body. They are pretty rare — this particular one is super rare,” Rosenberger explains.

The week of Rowan's surgery, her volleyball team hosted a sold-out “pink out” game.

“People really supported me in my town,” she says. “A ton of people came.”

It was standing-room only, she says. “It was probably the best volleyball game I played in my whole entire life. I was just trying to give it my all because I literally didn't know if I was going to ever be able to play again,” she says. “My whole team was rallying around me, and they dedicated the game to me.”

Her team won the game. Three days later, on Oct. 19, 2021, Rowan had a six-hour surgery. The sarcoma had spread outside the tumor into the surrounding tissue in her breast and close to her ribs. Tissue was taken from the skin on her back to reconstruct her breast, and one of her latissimus dorsi was rotated. Surgeons had to collapse one of her lungs and remove a rib.

“When I woke up, I was in so much pain. I didn't even know that there was pain that was that bad,” Rowan says. “I was extremely scared because I had never felt that kind of pain before. I literally kept asking my parents. I was like, 'Am I going to be okay? Am I going to make it?'"

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Fortunately, doctors were able to remove all the cancer. Rowan devoted herself to physical and occupational therapy so she could get back on the volleyball court.

That recovery process wasn't easy, says Rosenberger, adding that it required more rehab than open-heart surgery or total hip replacement.

“I really did witness firsthand her tenacity and her grit,” the doctor says. “Addison is just this full-of-life, positive spirit, and I think did fantastic because of that.”

This month, the 19-year-old sophomore at UNC-Chapel Hill celebrates her 3-year anniversary of being cancer-free. "We’re kind of all exhaling now,” Rosenberger says.

“I learned I was definitely stronger than I thought I was,” Rowan says. “I pulled out the strongest version of myself. That's what helped me defeat the odds.”

Rowan missed the college recruitment for volleyball players due to her recovery, but in March, she was able to play club volleyball.

“Now my body is pretty much back to normal,” she says. “I honestly feel stronger than I was before.”

The biology major still sees her doctors for scans and checkups every six months.

And, her cancer journey has inspired her in unexpected ways. She’s considering studying oncology or pathology. "After what I went through, I want to learn more and help people," she says.

As she looks to her future, she hopes her story inspires others fighting cancer.

“Cancer can be extremely defeating,” she says. “Focus on what you can control instead of what's out of your hands. It’s important to not hyper fixate on the negatives."

The strategy worked for her.

“No matter what the odds are, how rare a condition is that you have, at the end of the day, you are in control of your story and your future,” she says. “When you feel like everything's stacked against you, don’t let that defeat you and define you. You can push yourself and change your future.”

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