A life with lymphedema

In 1986, Bev Parker was weeding in her garden. A year before, she had been diagnosed and treated for early-stage breast cancer, which included an axillary lymph node dissection to remove 20 lymph nodes from the underarm near her left breast that contained cancer cells. As Bev worked, some needles from a nearby pine tree pricked her left arm. That’s how Bev first discovered she had lymphedema, a condition that can cause swelling because of a buildup of lymph fluid in the arm.

Bev, who is now 74 and lives in Illinois, has been dealing with lymphedema for 32 years. During that time, Bev has kept her lymphedema from getting worse by following some common tips. She doesn’t use saunas, she doesn’t sleep on her left side, she doesn’t wear tight clothes or jewelry, and she doesn’t wear a bra when she travels. She wears long sleeves and gloves when she gardens to protect herself from the same pricks that aggravated her initial lymphedema.

At one time, Bev was prescribed a lymphedema sleeve by her doctor. The garment made her hand swell. After speaking with her doctor, they agreed it was fine for Bev to stop wearing it. Bev’s case is mild enough, the doctor explained, that preventive measures and treatment with occasional manual lymphatic drainage, a massage that helps built-up lymph fluid drain back into the body, allow her to manage the conditions.

The tips Bev follows were gathered from doctors, people with lymphedema and other healthcare professionals over the years. Although lymphedema can be a difficult side effect for many, Bev has found ways to cope with it. “It’s like getting used to anything,” she says. She doesn’t worry about her lymphedema getting worse “because I do everything I think I should, and I don’t do what I shouldn’t. But if it happens, it happens, and I’ll deal with it then.”

Bev worried about the lymphedema when she was diagnosed twice more with breast cancer, a local recurrence in 2001 and a new diagnosis on the other side in 2005. She feared more surgeries, especially on her affected side, would make her lymphedema worse.  She made her doctors aware of her worry and they reassured her. “[The conversation] gave me some measure of confidence going into surgery that I’d come out of it OK. Which is what happened,” Bev says

Even if you don’t have lymphedema, Bev says it’s important to be aware of the risks. Doing so can help you recognize symptoms early so you can get treatment. You can also get tips on ways to reduce your risk; learn more in our Lymphedema Risks section. “You really have to be your own advocate,” Bev says.

While lymphedema has no cure, Bev is managing it in ways that work for her.   She wishes she had been more aware of lymphedema and its risks when she first went through treatment. Though it isn’t always easy, Bev feels good about the decisions she made. “I tell other people and I tell myself, I made the best choice I could with the information I had at the time.”

To learn more about lymphedema, check out our recent Facebook Live Ask the Expert: Lymphedema, where LBBC experts answered questions about lymphedema and compression garments. You can also download our Guide to Understanding Lymphedema or visit the lymphedema section of our website.