Understanding the science behind a chronic condition like lymphedema is one thing, but the experience of living with it is another. 

Alongside The Breasties Guide to Lymphedema After Breast and Gynecologic Cancers, created in collaboration with the nonprofit Well Beyond Breast Cancer, The Peak asked Breasties who are at risk of or living with lymphedema to share their experiences. 

From prioritizing prevention with compression garments to the annoying truths about living with the condition, keep reading to learn from others who’ve been—and are—in your shoes. 

Do What You Can, When You Can

“Prevention is key!” says Justine, a breast cancer survivor. “Wearing your sleeve when under repeated tension can possibly be the difference between keeping lymphedema at bay versus learning to manage it once diagnosed.” 

“I wish I had worn my sleeve more consistently, even though it may not feel particularly fun,” she continues. “Talking to a lymphedema therapist early—even if you do not have lymphedema—can help you take the steps to prevent effectively!”

Now, Justine says she wears her sleeve nearly daily. To make sure you’re getting all of the support out of your compression garment, Justine says, “keeping up your sleeves and ensuring you are getting new ones every few months is key.” 

Though the science is still uncertain, Justine also says she personally finds a vibration plate helpful on days when she says she feels more congested.

The “Life-Changing” Magic of Manual Lymphatic Drainage

Staci, a stage 4 breast cancer thriver, says that “manual lymphatic drainage (MLD) massages are life-changing for managing my lymphedema!” 

MLD is one treatment for lymphedema, often offered as a part of Complete (or Complex) Decongestive Therapy (CDT). It’s important to use MLD alongside compression therapy, which helps move fluid out of swollen areas, prevents fluid from re-accumulating, and supports the skin and soft tissues as swelling changes over time. 

She continued to explain that her lymphedema is mild, with her physical therapist calling it “lymphatic congestion,” so while she doesn’t wear compression garments daily, she has an MLD massage every six to eight weeks “or sooner if I’m experiencing discomfort.” 

“Along with managing the lymphedema, it’s got whole body wellness benefits!” says Staci. 

When she does wear a compression sleeve, Staci recommends those from LympheDivas. 

You Learn to Manage, But It’s Still Hard

Marian, who had 13 lymph nodes removed during her bilateral mastectomy, says she started to experience swelling fairly quickly following her surgery, but it worsened in the months that followed.

To manage her lymphedema, she wears compression garments 20 hours a day, alternating between a sleeve and glove during the day, and a nighttime sleeve to sleep in. She describes the nighttime sleeve as an oven mitt and says it is gentler compared to the daytime sleeve. 

Beyond compression, Marina says that exercise—cardio, yoga, and weight training—helps keep her lymphedema in check, along with self-MLD as taught to her by a Certified Lymphedema Therapist, and her affectionately named “space suit,” or pneumatic pump. 

“Drinking plenty of water and watching salt intake are important as well,” Marian advises. 

Despite learning to manage the condition, Marian says, “It still sucks, you know?”  

Some challenges that Marian notes about living with lymphedema—the lack of cute compression garments, the visibility of wearing a sleeve and questions that come with it, the hassle of paperwork and insurance—are obvious.

Others, however, are a little sneakier, though no less annoying.

“I am right-handed, but I have had to switch to wearing my watch and rings on my right hand, since the left arm and hand are basically always covered,” she says, as one example.

Another: “The gear gets in the way. During cold and flu season, I try to be especially careful not to open doors or touch other high-contact areas with the gloved hand since I can’t quickly sanitize it,” says Marian.

Finding Specialized Support

Randi, a stage 3B breast cancer survivor, doesn’t remember being told about her risk of lymphedema before her lumpectomy, during which she had four lymph nodes removed. 

“I just remember comparing my two wrists, and noticing that the arm that had the nodes removed was bigger than the other,” she recalls. 

When she brought her concerns to her medical team, she was referred to an occupational therapist specializing in lymphedema who performed MLD, used a pneumatic pump to reduce swelling, and prescribed Randi a compression sleeve and a fingerless glove. 

After a medical procedure caused a flare, Randi worked with her OT once again, who prescribed new compression garments—this time a glove that covered the fingers—and advised her to begin using a pneumatic pump at home, which she says she still uses daily even as her lymphedema is under control. 

Take the Time to Get the Care You Need

Emma, a breast and cervical cancer survivor, wants Breasties to prioritize their well-being, even if it seems inconvenient.

After being diagnosed with lymphedema following the removal of 19 lymph nodes and not seeing much success with occupational therapy appointments, she was recommended a pneumatic pump for home use.  

“The pump is great to do your own therapy at home,” Emma says. “At first it’s a little inconvenient, but you get used to it in no time.”

She explained that her treatments last about an hour, with an extra 45 minutes before bed if needed. Her tips for other Breasties are not to wear other compression garments while using the pump, take deep breaths, and, most importantly, relax. 

“Having to invest an hour+ of your day seems like an inconvenience,” she says. “I was very angry at the beginning because they didn’t explain this risk.” 

“I have made peace with that and take the hour+ time of my pneumatic pump therapy to do some meditation and think about it as pampering myself.”