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Lymphedema After Breast Cancer Surgery: Pain, Swelling May Occur Years Later

Even when lymphedema flares long after breast cancer surgery or radiation, the pain and swelling can be treated.

There is no rhyme, reason, or way to predict if a woman will experience lymphedema following surgery or radiation to treat breast cancer. Swelling of the arm, breast, or chest may begin shortly after breast cancer surgery or radiation, but some women experience lymphedema months—or even years—later.  According to the American Cancer Society, most women who have had breast cancer do not develop lymphedema, but the many who do can take steps to manage the swelling and pain, which can range from mild to severe.

Lymphedema results when lymph nodes and vessels are removed or scarred during breast cancer surgery. With fewer lymph nodes and vessels, it is more difficult for the upper body to drain lymph fluid. When excess lymph fluid builds up, pain and swelling occurs. Radiation for breast cancer also affects the flow of lymph fluid in the arm, chest, and breast area, and can cause lymphedema.

“Lymphedema is always a risk when a woman has had any lymph nodes removed or radiation for breast cancer,” says Monique Tiffany, R.N., nurse navigator at the Total Care Breast Center at Los Alamitos Medical Center. Tiffany advises women about lymphedema not only as a breast cancer care nurse, but also as a breast cancer survivor. She celebrated being cancer-free for 10 years this month.

Tiffany says she remains aware that lymphedema can still occur, even after a decade. “I still have to think about it if I’m going to get on a plane,” she says. Air travel can cause lymphedema to flare up.

Unfortunately, there is no way to prevent lymphedema prior to breast cancer surgery or radiation. Tiffany recommends that women get measured for a compression sleeve right after surgery, so the sleeve is available if needed. However, a woman newly diagnosed with breast cancer may find information about lymphedema overwhelming on top of everything else she is dealing with, so not all women will have the measurement done until lymphedema becomes an issue.

To manage the pain and swelling immediately after surgery, women are advised to raise the affected arm above heart level two to three times a day for 45 minutes, and to open and close their fist gently to help move lymph fluid out of the arm. Physical therapy and special exercises can help regain full range of motion in the weeks after surgery or radiation. A compression sleeve or special bandaging may be needed when pain and swelling persist. 

Because cuts, burns, or bug bites on the affected arm make the body respond with extra lymph fluid, causing or worsening lymphedema, it’s important to avoid these injuries. Wearing gloves while cleaning or gardening, a mitt while handling hot foods, and a thimble while sewing can help prevent cuts and burns. Cuts and scratches on the affected arm need to be treated right away with antibiotic ointment.

Heat can make lymphedema worse, so hot tubs, saunas, or heating pads are on the list of things to avoid, along with harsh soaps, which can dry the skin and make it more prone to cracking.

Lymphedema can seem particularly onerous when it begins several years after breast surgery or radiation. Having to deal with compression sleeves and massaging and elevating the arm comes as a newly inconvenient and unwelcome after-effect of breast cancer treatment.

“Lymphedema can occur at any time,” notes Barbara Stone, physical therapist at MemorialCare Todd Cancer Institute at Long Beach Memorial Medical Center. Stone sees patients at the outpatient Lymphedema Program at Memorial, which is part of the MemorialCare Rehabilitation Institute. The Lymphedema Program is open to anyone in the community who needs treatment for lymphedema.

Stone recently encountered a patient who just developed lymphedema, although her mastectomy was 25 years ago. “She recently began using a walker, and the extra strain on that arm may have caused the excess fluid,” she explains. In another case, a breast cancer survivor developed lymphedema three years after her breast cancer surgery while caring for her ill husband. Helping him up and turning him in bed strained her affected arm, and she developed lymphedema. While lymphedema can’t be cured, it can be treated, even when it occurs long after breast cancer surgery or radiation.

“The two things that help most are keeping your weight in a manageable range and light exercise of the arm,” says Monique Tiffany. Doing gentle weight-bearing exercises with the affected arm helps prevent a sudden occurrence of swelling after doing something like reaching for an object on a top shelf, she says.  “Lightly massaging the arm also helps. Even if one or two lymph nodes are still there, they can be retrained to do the job of draining fluid.”

Barbara Stone points out that water exercise can be very helpful in managing lymphedema. “When you’re in the water, it’s like wearing a compression garment,” she says. Women who have joint pain that makes walking or other exercise difficult can get in the water to help maintain that all-important mobility, she says.

More information on lymphedema is available from the National Lymphedema Network.

Rebecca Goddard December 12, 2011 at 02:54 PM
I remember after my double mastectomy, a nurse came in and explained lymphedema to me, and was a little shocked it wasn't told to me sooner, but with all of the things that breast cancer brings this was one that stays with you. I have to always remember not to carry heavy bags on that side, or my kids on that side, and blood pressure, and blood draws. It was overwhelming and part of the long list of things that made my cry daily for a long time. But nearly 2 years later it is just part of my life and do what I need to daily to stay healthy for me and my family.
Treacy Colbert December 12, 2011 at 06:06 PM
Rebecca, Thank you for sharing that part of your story. Wishing you continued good health!
Tina Martinez December 12, 2011 at 06:52 PM
I had a mastectomy 6 years ago. My job is in warehouse were i lift heavy boxes 4 hrs a day since my surgery. Wished i wouldnt have had my lymp nodes out. Get pain on the side where the surgery occured but been blessed that I can still work my phyical job.
Treacy Colbert December 13, 2011 at 02:08 AM
Best wishes, Tina. Stay strong!

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