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Davis County mom raising awareness about rare tumor based on personal experience

Posted at 8:04 AM, Sep 20, 2022
and last updated 2022-09-20 10:04:38-04

SYRACUSE, Utah — A Davis county mom is raising awareness about a condition that has impacted her life since 1996.

All those years ago, DeAnn Sorensen noticed a large lump behind one of her knees.

She visited a doctor who initially thought the tumor was cancerous.

“Anytime I was constantly moving, my foot was going numb,” Sorensen said.

But it turned out this tumor wasn’t cancer. DeAnn would learn she had a desmoid tumor – a non-metastasizing tumor that can have its own serious complications.

“It will eat away any structure it is by,” Sorensen said. “Nerve pain is like being stabbed occasionally, repeatedly, relentlessly.”

In DeAnn’s case the tumor ate away at the nerves, veins and artery behind her knee.

According to the National Cancer Institute, desmoid tumors impact 2-4 out of every 1,000,000 people.

The condition is extremely rare, which creates several challenges for doctors.

DeAnn says when she was first diagnosed, doctors didn’t have many case studies or much research to use when treating her complications.

“We are alone out here in the world,” Sorensen said.

While doctors don’t consider this condition a cancer, oncologists treat those impacted by the tumors because of many similarities.

In some cases, chemotherapy or radiation is used.

“For most it's a specific mutation that causes things to grow in that specific area,” said Dr. Anna Chalmers, a medical oncologist at the Huntsman Cancer Institute.

Doctors are turning to surgery as a treatment option less frequently because the tumors often return.

“To have these large, aggressive surgeries with all the complications and have tumors come back was not serving patients the best,” Dr. Chalmers said.

She added that a new drug is showing promise as a future treatment.

While research is being done, the rarity of the condition is a hurdle in learning more about the disease.

“It's so rare it's hard to get enough patients to provide a robust study that will show small differences between different treatment options,” said Dr. Ziga Cizman, an interventional radiologist at the Huntsman Cancer Institute.

DeAnn has not allowed the desmoid tumor to prevent her from living life.

She has overcome complications from surgeries over the years and nearly had her leg amputated. She still lives with the fear of that becoming a reality.

DeAnn is active outdoors and spends time as a performer in a rock band playing in local establishments across northern Utah.

She also manages a Facebook support group for people around the world living with these cruel tumors. It currently has more than 5,000 members.

Raising her voice for other survivors of these tumors and advocating for more research are things DeAnn will continue to do as she overcomes the life changing diagnosis she received 26 years ago.

“I don't want anybody to feel alone,” she said. “I am a huge advocate in getting better and I want to speak that to other patients”

DeAnn is raising money to support desmoid tumor research.