Breast cancer survivor champions federal lymphedema legislation

Cynthia Orr has also had a resolution passed by the American Bar Association

SAN ANTONIO – All it took was a nick from a knife, cutting vegetables she held in her hand.

By the next morning, Cynthia Orr, who is a noted criminal defense attorney, said her arm blew up to the size of her leg.

To put it lightly, “It was really not a good thing,” Orr said.

Orr had developed lymphedema nine years after her battle with breast cancer.

Dr. Brian Fricke, her specialist, said lymphedema is a chronic condition that is a very common complication, often a long-delayed side effect of breast cancer.

“It’s a swelling of the arm as the plumbing of the arm is affected during surgery, radiation and the chemotherapy treatments,” Fricke said.

Fricke is also the director of cancer rehabilitation at the Mays Cancer Center at UT Health San Antonio M.D. Anderson Cancer Center. He said the lymphatic system is the “first line of defense against any kind of infection.”

In Orr’s case, he said the cut on her hand was the kind of severe soft tissue infection that the “plumbing” in her arm couldn’t handle.

It took transplanting lymph nodes from her stomach into her arm to restore the needed circulation of her lymphatic system.

Orr said it was “a medical miracle” that Fricke and his team could repair its tiny vessels.

“They’re just so small, you can’t imagine anyone operating on them,” Orr said.

Orr said she wants more breast cancer survivors to benefit from the advances in treating lymphedema, from early detection to surgery and management of the chronic condition.

She said her arm is far less swollen but she needs plastic surgery to tighten up the loose skin that remains.

“It’s just thrilling to see progress,” Orr said.

Yet Orr said she’s also aware other breast cancer survivors aren’t as fortunate because they have no insurance, or are on Medicaid or Medicare.

None, Fricke said, pay for the compression garments and other supplies essential to exert continued pressure on the arm to manage the condition.

Without the treatments she is receiving, Orr said living with lymphedema is not only extremely uncomfortable and painful, but “It can lead to other infections -- sepsis, other cancers and death.”

Although there is some assistance through the Live Today Foundation, Orr is now championing the Lymphedema Treatment Act to expand coverage to more breast cancer survivors with lymphedema.

Orr had a resolution passed by the American Bar Association.

Her efforts were recognized by First Lady Dr. Jill Biden during a recent visit to the Mays Cancer Center, and she’s lobbied members of Congress, urging the bipartisan Lymphedema Treatment Act to become law.

Orr said, “I’m shouting it from the rooftops and pushing it as hard as we can, because it’s really needed.”

Fricke said Orr is “truly a force to be reckoned with.”

“If anyone’s going to get something that that large done, it’s her,” Fricke said.

About the Authors:

Jessie Degollado has been with KSAT since 1984. She is a general assignments reporter who covers a wide variety of stories. Raised in Laredo and as an anchor/reporter at KRGV in the Rio Grande Valley, Jessie is especially familiar with border and immigration issues. In 2007, Jessie also was inducted into the San Antonio Women's Hall of Fame.

Luis Cienfuegos is a photographer at KSAT 12.