Cathy Niebel – Sarcoma and Lymphedema Patient Story

In 1977, Cathy Niebel was diagnosed with Ewing sarcoma, a type of childhood cancer that originates in bone tissue. She received chemotherapy, radiation treatment, and underwent a surgical procedure at UPMC Children’s Hospital of Pittsburgh. The seven-year-old visited the doctor’s office just about every week.

When she was 10, Cathy developed lymphedema, a condition in which swelling (edema) occurs from abnormal accumulation of protein-rich lymph fluid in the space between cells in the body. Surgery to remove the tumor and lymph nodes followed by adjuvant treatment like radiation affected her lymphatic system, which led to her developing lymphedema. Cathy recalls visiting UPMC Children’s frequently to get antibiotics and other care as she was more prone to getting infections, due to her condition.

As time went on, she managed her lymphedema – balancing the infections, stiffness, and toll of the physical appearance of swelling. She moved out-of-state to Texas and Louisiana and said she remembers having to visit emergency departments.

Tailored Lymphedema Care

When she moved back to Pittsburgh in 2010, Cathy needed more compression gloves and was looking for a new physician. She was referred to Atilla Soran, MD, a breast surgical oncologist, professor of Surgery, and director of the Lymphedema Program at UPMC Magee-Womens Hospital.

Dr. Soran oversaw Cathy’s treatment, which required a multidisciplinary team of experts who utilized nonsurgical methods and various surgical procedures over the years like debulking lymphedema liposuction performed by UPMC plastic surgeon Tahsin Acarturk, MD, to remove swelling in her arm.

“Dr. Soran has been fabulous as my overall caregiver. If I ever have a problem, I call him, and I get what I need,” the 54-year-old says. “He’s been monitoring everything that I’m doing and what I’m supposed to be doing.”

Although Cathy found some relief, she was still struggling with her arm.

“When I saw her, it was very clear she needed to have soft tissue reconstruction to resurface her upper arm to allow for regeneration of the lymphatic system,” says Carolyn De La Cruz, MD, a plastic and reconstructive surgeon and director of Advanced Lymphatic Surgery at UPMC.

Specialized Surgical Treatment

Cathy’s final surgery was a highly technical 10-hour procedure known as a SCIP flap where Dr. De La Cruz took tissue from Cathy’s abdomen and moved it to her arm, helping the area regenerate and get the fluid moving again. The special tissue contains nutrients, blood vessels, and lymphatic tissue.

Afterwards, Cathy experienced a complication and developed a hematoma. A nurse who was monitoring Cathy’s blood flow noticed an issue and she was taken back into surgery. The “flap” was saved, and reconstruction was a success. Cathy’s recovery included a nine day stay at UPMC Shadyside.

“The surgery was intense, and I had a long recovery, but everything is great now,” says the Cranberry Township resident. “Dr. De La Cruz was wonderful, honest, open, and matter of fact.”

According to Dr. De La Cruz, the traditional treatment more than a decade ago would have been to remove Cathy’s arm.

“At a lot of national cancer institutes – particularly at UPMC Hillman – limb salvage is really an extraordinary new idea where people are getting treated, they go on cancer free, and get to keep their arm, or whichever limb is being treated,” says Dr. De La Cruz.

Life After Comprehensive Care

As a full-time music teacher who owns her own studio, Cathy has noticed less swelling in her fingers and hand.

“Before the comprehensive lymphedema therapy, including surgeries, playing the organ for church was a challenge. When I would hold choir practice before Mass, I would have to put my glove back on before Mass started, remove it to play, then put the glove back on during the homily, and remove it again to finish playing,” explains Cathy.

“Now I can arrive at church, remove my glove, and not worry about my fingers and hand swelling up making it difficult to play. My fingers no longer look like little sausages. The treatment is working.”

Because lymphedema is a chronic disease, Cathy will continue to see Dr. Soran on an annual basis.

She has come a long way since being picked on as a child for her condition. Cathy doesn’t let her lymphedema get the best of her.

“I thought I could never do what I wanted to do and now I’m a business owner,” she says. “I try to instill in my students that if you put your mind to it, you can do it – and I’m living that.”

Reflecting on her treatment, Cathy says she appreciates how supportive her care team was and how they listened to her.

“Having this my whole life, I’ve always been protective,” says Cathy. “I appreciate that my doctors and nurses listened about what worked and didn’t work for me in the past. They took my concerns seriously and talked me through everything. I couldn’t have asked for better caregivers. I wanted the truth and compassion and I think I got that everywhere I went at UPMC.”

Cathy’s treatment and results may not be representative of all similar cases.