Years ago, Barbara Tipton had a neighbor, an elderly woman, who, after she was treated for breast cancer, continuously wore her arm in a sling.
The neighbor suffered from a chronic condition called lymphedema that can follow breast cancer treatment and cause the affected limb to swell.
“She didn’t know what to do. (Her arm) was swelling and swelling,” Tipton recalls of her neighbor.
Tipton told herself that if she ever had to face such a situation, “Whatever I have to do, I don’t want to carry my arm in a sling.”
That early introduction to lymphedema motivates Tipton, who’s a 12-year survivor of breast cancer.
She developed lymphedema in her right arm, but has been managing it with compression sleeves she wears and an exercise class she’s been attending for 10 years. The class is specially designed for those with the condition.
This past Christmas, she had a flare up, after she knocked her arm on a doorway, carrying wrapped presents to the Christmas tree.
“By Christmas Day, my elbow was swollen,” Tipton said.
But she takes it in stride, and her arm is much better now.
“I guess I have a different attitude than a lot of people,” Tipton said. “I know I can control it, and I don’t let it control me.”
Lymphedema is swelling caused by the buildup of lymph fluid, a clear fluid of mostly protein and white blood cells.
The fluid is drained from the body’s tissues and organs by lymph vessels.
Then, it’s filtered by lymph nodes and eventually drains into the bloodstream, according to http://www.uptodate.com, a physician-authored website.
There are two types of lymphedema, primary and secondary.
Primary lymphedema can be present at birth or develop later in life from unknown causes, according to the National Lymphedema Network.
Secondary lymphedema can develop as a result of surgery, radiation, infection or trauma that affects the lymph nodes.
Different types of cancer are linked to lymphedema; the cancer most commonly associated with the condition is breast cancer, according to the UptoDate website.
In fact, more than 50 percent of women who have breast-cancer surgery develop lymphedema within two years of the surgery, according to the National Cancer Institute.
“Lymphedema is a problem that has diminished over the years, but is still there,” said Dr. Jay Brooks, hematology/oncology chairman at Ochsner Baton Rouge.
To a great extent, the risk for lymphedema corresponds to the “extent of removal of the lymph nodes in the armpit,” Brooks said.
“Unfortunately, there is no rhyme or reason ... we don’t know who will get lymphedema and who won’t,” said Jennifer Miller, an occupational therapist certified in lymphedema treatment with the Baudry Therapy Center in Metairie.
For cancer survivors, having lymphedema can feel, on an emotional level, “like salt in a wound,” Miller said.
“It’s a reminder to you ... people ask,” she said.
“To be diagnosed with cancer ... and then told you have another condition called lymphedema” is difficult, said Chris Perkins, an occupational therapist who leads a special exercise class at Baton Rouge General Medical Center.
“My whole goal and purpose is to let them know we can manage lymphedema ... they need to be able to do the things they want to do,” said Perkins, who is certified in lymphedema treatment.
The “Healthy Step” exercise class she leads is for cancer survivors and those with lymphedema as well as for people with chronic fatigue.
The initial symptoms of lymphedema may be a swelling of the arm or upper chest as well as a feeling of discomfort, fatigue and numbness or tingling of the arm.
Treatment, said Chalisse LeBauve, certified lymphedema therapist with Woman’s Hospital, includes:
- A specific type of massage for “complete decongestive therapy” to drain the lymph fluid and reduce swelling.
- Bandaging and prescribed compression sleeves.
- Education in self-management.
Other important factors are skin care and decongestive exercise, she said.
“If we can catch it in an early stage, we can manage it,” LeBauve said.
Several physicians and occupational therapists spoke of the lack of research into lymphedema.
“There’s so little research out there. Nobody’s dying of lymphedema. (Medical) studies have small sample sizes,” Miller said.
Lymphedema treatment “tends to be a really ignored field in the medical community around the world,” said Saskia Thiadens, a registered nurse and executive director of the Lymphedema National Network.
“Many people have been told by their physician there’s no treatment available,” Thiadens said.
Without treatment, lymphedema only worsens, she said.
“We do know that conservative lymphedema treatment does work,” said Thiadens, referring to complete decongestive therapy.
“It’s a very labor-intensive treatment,” she said.
“Now, there are a handful of plastic surgeons throughout the world” who are looking at different types of surgery, she said.
However, she added, “there are no published articles with evidence-based results.”
“Surgical intervention is still in its infancy,” Thiadens said.
In Louisiana, surgeons at the St. Charles Surgical Hospital in New Orleans offer a type of surgery for lymphedema called vascularized lymph node transfer “in the setting of IRB (institutional review board) approved clinical outcomes trials,” according to the National Institute of Lymphology.
In a vascularized lymph node transfer, “normal lymph nodes ... are transferred to a region of the body that suffers from lymphedema,” according to the institute.
There are some factors known to increase the risk of lymphedema, said Dr. John Cole, acting section chief of hematology/oncology at the LSU School of Medicine in New Orleans.
Those risk factors include:
- A large number of lymph nodes being removed through the surgical procedure called ancillary dissection, to diagnose cancer.
A smaller surgery, sentinel lymph node biopsy, which removes only a few lymph nodes, “is the preferred method of diagnosis,” Cole said.
“Modern surgery today is specially tailored to try to avoid the risk of lymphedema,” he said.
- Radiation therapy to tissue under the arm.
There is also some association of lymphedema with obesity, Cole said.
In addition to treatment, there are also things that someone with lymphedema should be careful about, said Dr. Deborah Abernathy, a medical oncologist with Our Lady of the Lake Physician Group:
- Avoid injury to the arm.
- Don’t get blood drawn from that arm.
- Don’t take blood pressure a lot on that arm.
- Maintain an ideal weight.
“Women’s health is so much more proactive than it used to be, and women are more proactive than they used to be,” Abernathy said.
“You jump on it. If you start to notice mild swelling, (you think) ‘Let’s take care of it,’ ” she said.