Cancer treatments like radiation and surgery can save lives, but they can also leave survivors with a frustrating reminder of their ordeal. It’s called lymphedema, and it can appear after cancer treatment damages lymph nodes, causing arms or legs to swell with backed-up lymph fluid.
That’s why actress Kathy Bates, a two-time cancer survivor, calls lymphedema “a souvenir you definitely don’t want.” Known for her work in “Misery,” “Dolores Claiborne,” “Fried Green Tomatoes” and “Titanic,” Bates opened up about her experience with lymphedema to People magazine.
“I really felt that life was over for me,” she said of her lymphedema diagnosis.
That’s a common feeling expressed by people with lymphedema, says Tonya Smith-Jackson, OTR/L, CLT-LANA, an occupational therapist at the AdventHealth Sports Med and Rehab who specializes in lymphedema care. Occupational therapists like Smith-Jackson help people get back to living the life they want.
“Once they finish cancer treatment, patients feel empowered, which is positive, but that can make their lymphedema diagnosis more difficult to deal with,” she says. “Its symptoms are a constant reminder of their cancer, and it takes a toll on many patients.”
Still, Bates has also found that, while there is no cure for lymphedema, she can take control of the disorder through lifestyle changes and the help of occupational therapists.
AdventHealth's CREATION Life philosophy teaches that making choices to improve your health puts you in the mindset that you’re in control of your own life.
Education to make healthy choices about lymphedema is Smith-Jackson’s biggest single role.
“The more you know about the condition the better you’re able to manage it and not feel like you’re out of control.”
What Is Lymphedema?
Similar to how your arteries and veins carry blood around your body, so too does a network of vessels carry around a clear liquid called “lymph” (named after the Greek for “water”). Lymph is primarily involved in protecting the body from infections.
When the lymphatic system is damaged — often, as a result of cancer treatments like surgery and radiation — lymph can back up in the limbs, causing lymphedema. The word “edema” is the medical term for swelling.
Because it involves a poorly known system of the body, lymphedema often takes people by surprise. Most often, patients who first experience lymphedema don’t understand why their arm or leg has swelled up, Smith-Jackson says.
In some cases, people will tell her they’ve had swelling since they were children or since they gave birth. It may get worse in the evening and ease up in the morning.
But most of her patients have lymphedema because cancer treatments damaged their lymphatic system.
There is no cure for lymphedema. When patients learn to manage their condition, they are building habits for the rest of their life. But it’s not always easy.
Finding a New Normal
Though lymphedema is usually not painful, swollen arms and legs can cause embarrassment and anxiety, Smith-Jackson says. The condition is difficult to keep private, so patients will often get questions, even well-meaning ones, and feel as if they have to re-tell their cancer stories.
For cancer survivors, it can feel like a return to a time in their life when they didn’t have control over their bodies or their appearance.
“The whole time people are going through cancer treatment, they’re under the impression that after it’s done, everything will go back to the way it was before,” Smith-Jackson says. “For people with lymphedema, it’s a grieving process as people struggle to find a new normal, a new perspective.”
Kathy Bates was frustrated by her lymphedema, too.
“I (thought I) probably wouldn’t work again, and I was angry for a long time,” she told the magazine.
In addition to treatments for the physical aspects of lymphedema, AdventHealth has options to help people heal emotionally and spiritually as well.
Support groups can allow those with lymphedema to share their stories, while music therapy can help them express themselves, Smith-Jackson says.
Meanwhile, patients find that controlling the physical symptoms of their disorder can help them feel more in control.
Finding Control Through Lifestyle Changes
Even though she can’t offer a cure, Smith-Jackson can teach patients how to limit their swelling.
Compression bandaging, followed by compression clothing, are necessary to reduce swelling, and maintain it over time. Compression clothes are available in many designs and styles.
It’s normal to be anxious about going out in public wearing compression clothing, but conquering this fear is important because lymphatic fluid will build up if they’re not worn.
She also teaches patients how to massage their arms and legs to help guide lymph back into the circulation system, called manual lymphatic drainage.
“During a typical appointment, I describe what I’m doing as I go through the steps of manual drainage and say how each step affects your symptoms,” Smith-Jackson says. Her other tips include:
- Keeping your skin clean, because built-up lymphatic fluid can be a source of infection from even minor cuts and scrapes
- Managing your weight
- Avoiding nicotine, alcohol and excessive heat
Bates found control over lymphedema by wearing compression clothing and losing about 60 pounds through exercise and healthy eating. She has also become the national spokeswoman for the Lymphatic Education & Research Network.
But you don’t have to be a famous actress to find your own way to physical, mental and spiritual health with lymphedema. AdventHealth Sports Medicine and Rehabilitation can give you the tools to regain control of your symptoms and your life.