After surgery to remove two tumors in her right breast, then another operation involving the removal of both her breasts, Jackie O’Rourke now lives with lymphedema.
Physically, her right arm is disproportionately bloated. O’Rourke said it feels heavy, but mentally, lymphedema follows her everywhere, acting as a constant reminder of what she has overcome and the puzzling lifelong complication she must now compensate for.
O’Rourke’s form of lymphedema is categorized as secondary. According to the National Lymphedema Network, secondary lymphedema is an accumulation of lymph fluid that causes swelling that is due to lymph vessel damage or lymph node removal, whether because of cancer treatment or physical trauma from an accident. O’Rourke was diagnosed with breast cancer in 2002. As part of her surgery, O’Rourke had 15 lymph nodes removed. She noticed a swelling in April 2004 while watching her son’s basketball game.
For O’Rourke, living with lymphedema presents a more difficult challenge than her three-year bout with breast cancer.
“With surgery you heal, with chemo or radiation there’s an end,” she said. “But lymphedema is frustrating because it’s never over.”
Because of the heaviness of her arm and to prevent greater swelling, O’Rourke had to quit her job painting walls as an interior designer.
“The plus side is I have more time with my kids,” she said. “But it’s hard not to work. I did this for 11 years and loved it and made a good living out of it. It really helped my creativity.”
Saskia Thiadens, founder and executive director of the National Lymphedema Network, said patients with the condition have a more compromised immune system and are more prone to infection. “Some people break out with infections for totally unknown causes,” she said.
O’Rourke said she once acquired an infection while attempting to paint her walls with a roller, an event that sent her to the emergency room. She must be attentive to any signs of infection because it could spread throughout her body and threaten her life.
When infections do occur, Jane Armer, director of nursing research for Ellis Fischel Cancer Center, said “the bacteria that gets under the skin grows quickly, like in a petri dish. They can grow exponentially.”
Avoiding skin breakage and insect bites are some of the precautions to reduce the risk of infection, Thiadens said.
Although the continuous precautions limit her activities, O’Rourke said she lives a more meaningful life now and doesn’t waste time worrying about the little stuff. “There are some blessings in surviving cancer,” she said. “You learn to value your life more. The biggest thing is you live in the moment.”
Despite her various cancer treatments and the lymphedema she lives with, she does not appear fatigued or downtrodden. Aside from friends, family and prayer, O’Rourke said writing in a journal has helped her in the healing process. During her struggle with breast cancer, she said writing kept her from crying in front of her two sons, now 8 and 10.
Sometimes when discussing sensitive topics, O’Rourke lightens conversation with surprising, but subtle humor. “I certainly don’t feel like I did anything to cause breast cancer, and so I say I got it cause I had boobs,” she said.
Since her treatment, she has lost four friends to breast cancer.
“I’m glad to be alive,” she said. “I’ll put up with lymphedema.”
Breast cancer is the leading cause of secondary lymphedema. The American Cancer Society estimates that there will be 178,480 women in the United States diagnosed with invasive breast cancer in 2007, in addition to 62,030 cases of non-invasive breast cancer. In Missouri, an estimated 3,730 women will be diagnosed with breast cancer in 2007, said Sherri Homan, epidemiologist for the Missouri Department of Health and Senior Services and nurse researcher.
Although no single figure exists for the percentage of women who develop lymphedema after breast cancer, Thiadens, said it’s 30 to 38 percent.
Homan said a review of the scientific literature reports a range as disparate as 3 percent to 87 percent, a range she contributes to the lack of a standard measurement for when a swelling is categorized as lymphedema. Also, not everyone who develops lymphedema seeks treatment or it may occur after measurements are no longer being taken.
Since 1998, Armer has been conducting research to establish foundational knowledge of lymphedema. She’s working with a research team to understand when lymphedema occurs, what triggers the occurrence, what the associated symptoms may be, what the psychosocial responses are and why some women develop lymphedema and others do not.
In September, Armer received funding from the National Institutes of Health and internal funding from MU to conduct a survivorship study. It will track women who were diagnosed with breast cancer three years ago for the next four years to better answer those questions. The goal is to find ways to reduce risk and best manage the condition.
Once a person has undergone lymph node removal or lymphatic injury, they are at a lifelong risk.
“Some people don’t develop lymphedema even though there’s damage,” Julie Peterson, lymphedema researcher at the Ellis Fischel Cancer Center, said.
Armer said research suggests that the deeper the lymph node removal, the greater the risk.
Some develop lymphedema from little damage, such as 68-year-old Kay Smith, who had only one lymph node removed after her surgery.
Before joining the study, she had only heard of lymphedema. After she went through breast cancer treatment, she joined the study and shortly after developed lymphedema.
“I’ve learned so much,” she said. “The ladies were very informative.”
She anticipates that 200 out of the 315 women in the previous study will sign on when they reach the three-year mark from the previous study, which may lead to a total of more than 300 participants.
“The diversity of the people that we collect in the study will help us to understand the issues,” she said. “We don’t want a homogeneous population, we won’t learn as much from that.”
Even with precautionary steps to reduce the risk of triggering lymphedema, there are no guarantees.
“A lot of people follow risk reduction, but they still develop lymphedema,” Thiadens said. “But if we can educate patients, it won’t be something they won’t know about.”
Not knowing about lymphedema, Thiadens said, presents another issue.
When she first began the National Lymphedema Network in 1988, she said there wasn’t a single soul who could offer her information.
Peterson, a lymphedema patient herself, understands the importance of informing others.
“So you have your life saved, and five years from now, all of a sudden you’ve got this swollen arm,” Peterson said. “It hurts, your grip isn’t good, you need to reduce that swelling. Your therapist says we can make it better, but we can’t make it go away. So now you have to wear a compression garment every day and you can say, ‘Boy, this is more of a hassle than cancer.’”
A compression garment is worn over the affected limb of lymphedema patients to reduce swelling. The garments, Thiadens said, are expensive, ranging around from $100 to $200 for the arms and $400 to $500 for lower limbs. They must be replaced twice a year, and Medicare does not cover the costs.
Although avoiding skin breakage is part of risk reduction, O’Rourke said she goes against the rules with a side treatment she receives.
O’Rourke visits a traditional Chinese herbalist for acupuncture treatment. She said the treatment improves circulation, is good for her overall immune system and leaves her with an overall feeling of well-being.
With so many risks and unknowns, O’Rourke must find the balance between the advice of health professionals and what feels right.