PITTSBURGH — It’s estimated that 10 million people in the U.S. suffer from lymphedema. The painful build-up of fluid has several causes, but fewer solutions. Katherine Amenta sat down exclusively with the UPMC doctor who became the first in the country to try a new approach.
“I don’t think I ever really thought about, ‘I can’t do it’,” said Cathy Niebel. “I just have to figure out, ‘how can I do it?’’”
For Niebel, filling a room with music wasn’t always so easy.
“There’s many lessons that I had to learn growing up,” said Niebel. “How to overcome things that other kids didn’t have to overcome.”
Those life lessons started in 1977 when she was just 7 years old. Niebel broke her arm and the trip to the ER changed her life. Doctors diagnosed her with a rare cancer in her left arm, Ewing sarcoma. She was cured, but it also left her with a life-long condition: lymphedema.
“When I was 10, I remember seeing swelling in my arm,” said Niebel.
That swelling was the result of fluid that can build up in our tissue when the lymphatic system is damaged or lymph nodes removed. It can happen after cancer surgeries like Niebel’s or burns or other trauma.
For decades, Neibel tried to balance the infections, stiffness and the toll of the physical appearance. But then, she came to UPMC Magee and found Dr. Atilla Soran, Director of UPMC’s Lymphedema program.
Dr. Soran told me that lymphedema has been, what he calls a “neglected problem”.
“Lymphedema is not very much known in the medical field, unfortunately,” said Dr. Soran.
It’s why his team created the first university-based lymphedema program in Western PA. And what they’re doing, was a game-changer. Dr. Soran took tissue from Neibel’s abdomen and moved it to her arm, helping the area regenerate and finally get the fluid moving again. He says it’s a procedure that not many hospitals are doing.
“It was amazing. It was just it was amazing,” said Niebel. “Brings tears to my eyes just just thinking about wow...it can function it actually function and it looks normal.”
For Dr. Soran, his mission has now turned to preventing lymphedema from ever happening. He’s become the first in the country to try mapping-out the area during breast cancer surgery, to preserve the arm lymphatics, instead of just removing them along with the breast lymphatics. He says in a three year span, 96% of his patients never got arm lymphedema.
“I think that’s wonderful,” said Niebel. “If somebody else doesn’t have to go through this, that’s, that’s amazing.”
A hope that could one day become a reality...
Dr. Soran says this new approach can work for lymphedema in the leg as well, but right now, his team isn’t doing it. However, he’s encouraged by the early data he’s been gathering.
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