Woman diagnosed with desmoid tumor raising awareness, money for research

By Kathleen Jordan

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    LEWISTON, Maine (WMTW) — A Lewiston woman is taking a grim diagnosis and trying to help others. Doctors don’t know much time she has, but she’s using every day she has to make a difference.

Two years ago, when she was only 32, Stephanie Clark was told she had a rare cancer in the form of a tumor. Clark says at the time, she had finally found her dream job.

“I put myself through CNA school in 2019,” she said, “I graduated at the top of my class, and I loved it. I was a CNA for only nine months.”

That’s when she says her world stopped.

“One night the pain got so bad, I said I have to go to the ER and I did,” she explained, “and that’s when I discovered the massive tumor. Right now it’s about the size of a brick.”

Doctors told her she had a desmoid tumor. The National Cancer Institute says these types of tumors grow from connective tissue, but they still don’t know what causes them.

“They can surgically remove the tumor, but where it’s located in my body, you can kind of see it right here, it’s a very dangerous location,” she said, “and my oncologist at New England Cancer Specialists thinks it’s a very morbid surgery to have.”

She says in her case, there is no cure, only treatment like chemotherapy or cryoablation. Her tumor is in her left chest wall, now pushing on her heart and lungs.

Once very active, Clark now struggles to do daily tasks like laundry or cleaning and has to take several medications, day and night.

“There are a lot of days where I can’t get out of bed, can’t get out of my pajamas,” she said.

But she’s trying to find some light in her situation. She and her mom actually nicknamed her tumor.

“Let’s call it Hank, and our mission will be to ‘yank hank,’” she said. “I said I like it. So, ‘This is Hank, and this is me.’”

From there came “Happy Hour with Hank,” a Facebook page she uses to raise awareness about this rare diagnosis and to connect with other people in her situation.

“I’ve connected with dozens of other people, we call them “desmoidians” around the country,” she said, “I just feel like these people get me. This is where I belong.”

She was also selling shirts this past month that say “Yank Hank” to raise money for the Desmoid Tumor Research Foundation.

“I want to uplift people that have debilitating diseases and also raise awareness about desmoids because they are so rare,” Clark said.

The National Cancer Institute says for every 1 million people worldwide, only two to four people are diagnosed each year.

Stephanie is grateful for her partner, Anson, who has become her caretaker.

“He’s actually the one who shaved my head for me because it was falling out in lumps,” she said.

She’s also grateful for her son, Noah. Doctors can’t tell her how much time she has, but she is making the most of each day she’s given.

“When I got this diagnosis, he was just starting sixth grade, and I was kind of bargaining,” she said, “Please just let me live long enough to see him graduate high school. I just want to see my baby graduate.”

You can follow Stephanie’s journey through ‘Happy Hour with Hank’ and learn more about desmoids.

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