It happens to some people after surgery for breast cancer or melanoma. While they beat the cancer, they are left with a painful and life-altering condition.
Now doctors have a new way to help.
Jeannette Aspden's right arm is a constant reminder of her battle with breast cancer four years ago.
If it weren't for the heavy black sleeve wrapping it from shoulder to fingers, her arm might look more like a balloon.
"I have an even more bulky and difficult thing to sleep with," Jeannette says.
To get rid of all of Jeannette's cancer, surgeons had to remove the tumor and breast tissue, and also lymph nodes under the armpit.
The same is done for many melanoma skin cancer surgeries as well.
Lymph nodes keep fluid moving through the body, and help fight dangerous infections by filtering out bacteria.
"When they're disrupted, fluid builds up in the arm or in the leg, wherever they lymph nodes were removed from," says Dr. Suhail Kanchwala of Penn Medicine.
Bacteria can also build up.
That was Jeannette's first sign she had a condition called lymphedema.
"It was one infection after another," she says, shaking her head.
Dr. Kanchwala says that's not unusual. "Many patients I've met have had problems that land them in the hospital with I-V antibiotices multiple times, even in the course of a year," he says.
And the swelling increased with each infection, making every hand movement painful and difficult for this free-lance writer.
"It hampers my livelihood. It hampers my everyday life," she says and adds, "You don't know the back of your hand anymore. It just looks wrong."
Clothes often don't fit, and the swollen limb is unsightly and attract attention.
"So the little boy said, 'Mommy, what's wrong with her arm? And she went, 'Shhhhhhhh!" Jeannette recalls.
There's no cure for lymphedema. The primary treatments are exercises and compression with garments that squeeze fluid out of the affected limb.
But they are difficult to wear, expensive - and not completely covered by insurance, and the effects only last while the garment is on.
So Dr. Kanchwala decided to bring a procedure developed in France to Philadelphia.
It is a transplant, moving lymph nodes from an unaffected area of the body to the area where the lymph nodes were removed. In Jeannette's case surgeons transplanted lymph nodes from her abdomen up to her underarm.
"Taking them from just underneath the skin and putting them in another area just underneath the skin," says Dr. Kanchwala.
It is a delicate procedure but has proven results for most patients.
A melanoma patient's leg went from grossly deformed to moderately swollen in just 3 weeks after surgery.
"About 60 per cent of the patients had a noticeable decrease in their lymphedema symptoms," he said, referring to surgery at one center doing the transplants.
In Jeannette's case, 10 days after surgery, her swelling has come down considerably.
Her hands are nearly equal in size - "Look, I hane knuckles," she crows.
And veins are visible again on the underside of her wrist.
"This is wonderful," Dr. Kanchwala comments, looking at her hands.
"I was actually able to get my wedding ring on this hand. I have not been able to do that in 4 years," Jeannette tells the doctor and Joy Cohn, a physical therapist and team leader of Penn Medicine's Lymphedema Services.
Jeannette and most other patients will still have to wear a compression sleeve but she may be able to wear it less often.
And most patients will get fewer infections and more mobility.
"This is treating patients' quality of life," Dr. Kanchwala says.
Jeannette is happy so far with her results. She says it is already easier to use her cell phone.
But she did say the first week of her recovery was more painful than she had expected.
Right now, the lymph node transplant is only being done for patients with lymphedema as a result of surgery, radiation, and scarring. That is referred to as secondary lymphedema. Primary lymphedema is an inherited condition that begins in infancy, puberty, or early adulthood.
The doctor says this is a last resort for patients. It is only for people who still have painful swelling and infections, even though they are doing other therapies.
For information, call Penn Medicine Plastic Surgery at 215-662-7300.
