The Swollen Truth about Lymphedema


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Before I personally became affected by its dreadful presence post-breast cancer treatment, I simply joined the rest of society’s collective yawn in not really concerning myself or knowing much about lymphedema at all. In fact, prior to diagnosis, I had no clue that March was lymphedema Awareness Month.

The seldom talked about, yet debilitating condition known as lymphedema, means that your lymph vessels are unable to adequately drain lymph fluid—a fluid containing infection-fighting white blood cells. It can be caused by injury, trauma or congenital defects in the lymphatic system. The fluid typically backs up typically in the arm or leg—causing edema or swelling to develop. The intricate structure of nodules—known as the lymphatic system—serves to filter lymphatic fluid. When the normal flow of the fluid is blocked, the lymphatic fluid collects in surrounding tissues and causes painful swelling.

A blockage of the lymphatic system can be either primary (occurring on its own) or secondary (caused by another disease or condition). Secondary lymphedema is far more common than primary, and while it is most commonly reported after breast cancer treatment, it can also result from the treatment of cervical, endometrial, vulvar, head and neck, and prostate cancers, as well as sarcomas and melanoma.

As a breast cancer patient, I became one in five individuals who, after receiving conventional breast cancer treatment, became affected by lymphedema.

That 20 percent statistic can sharply increase (even as high as 70 percent) if any of the following were part of one’s treatment:

  • Full axillary lymph node dissection (removal of lymph nodes above, below, and under the pectoralis minor muscle—known as levels I-III)
  • Radiation to the lymph node areas after lymph node surgery
  • Extensive cancer in the lymph nodes
  • Chemotherapy
  • Mastectomy rather than lumpectomy

When you’re in the throes of aggressive cancer treatment, your sole focus is simply—getting through it. What happens on the other end of cancer treatment is an entirely new battle, one with less direction.

About six weeks after my bilateral mastectomy, I noticed what appeared to be ropes forming under the skin, extending from the armpit where my lymph nodes were removed down my arm to the wrist. At my next surgical oncology appointment, I talked about the pain and reduction in movement in that arm, and after examining it she told me it was “cording.”

Axillary web syndrome (AWS) or cording is a common consequence of breast cancer surgeries, especially those involving axillary node dissection with mastectomy, and often the trauma from surgery causes a hardening of the connective tissue, which causes those tight cords to form.

While there is still a lot of mystery surrounding its occurrence, when you are affected by those thick rope-like strands visible under the skin—you painfully know it. For me, as with many others traveling this road, post-mastectomy cording was the foreshadowing of lymphedema to come.

It wasn’t long after 30 rounds of radiation to my chest and remaining lymph nodes, that I began noticing pain and weakness in that arm. At first, it was subtle—my arm feeling sore and tight—until it progressed to me catching a football on the field with my kids that left an indent so deep on my arm that you could practically see through to the other side. I learned this is what doctors and nurses would refer to as a +4 on the pitting edema scale—very deep indentation lasting for over 15 minutes.

In my case, extensive cancer treatment was the obvious culprit of my symptoms. When the cause of lymphedema isn't as obvious, your doctor may order imaging tests to get a look at your lymph system.

Though lymphedema is incurable, once proper diagnosis has been made, treatment can begin. The good news for patients is that early diagnosis and treatment can help reduce discomfort and lead to understanding of the most effective ways to live with lymphedema’s swollen presence.

Treatment for Lymphedema
While the following treatment approaches are not a magic cure, they have certainly been beneficial in my experience. Other, more advanced treatment options are also available for those with more severe cases of lymphedema.

  • Physical therapy. Under the care of an expert lymphedema specialist, I learned ways to help retrain the lymphatic system to recirculate waste to other lymph node areas in the body through self-massage. "The first line of treatment for lymphedema is usually physical therapy," said Jean Lincoln-Gauthier, physical therapist in Outpatient Rehabilitation at South Shore Health. "For Nicole, I started her treatment with manual lymphatic drainage, massage, and exercises she could do at home."

    Jean’s compassion and expertise in the management of lymphedema was second to none. She became a vital member of my health care team, working closely with me to design a treatment program to not only help control the swelling, but to meet my goals for returning to regular activities.
  • Compression sleeve. This stretchy, elasticized garment is custom-fitted to your arm, and helps with pain and swelling. Initially the sleeve can feel constricting, but it really helps ease discomfort while encouraging lymphatic flow. It also helps to soften fluid-swollen areas.
  • Exercise plan. Under the discretion of your lymphedema specialist, a regular regimen of stretching and range-of-motion exercises can help strengthen the lymphatic system; and,
  • Lifestyle changes. I’ve had to mindfully change the way I would once mindlessly use my affected arm. For instance, not carrying heavy items in that arm (groceries, handbags, etc.), trying to avoid trauma to the arm, and vigilance in keeping my hands gloved when cleaning to reduce infection/irritation.

Don’t Suffer in Silence

It’s very easy—especially as a cancer patient—to hold onto the notion that there are worse things in life than a few uncomfortable side effects, including lymphedema. Often with that notion comes the thought that the best approach to deal with it is to stop complaining and suffer as quietly as possible. Don’t be that patient. Be proactive. Talk to your doctor. Find out if physical therapy and other treatments are right for your situation. .

Suffering in silence results in one thing and one thing only—continuing to bask in society’s collective yawn. Effective management early on means effective treatment. Know that there skilled experts ready and willing to help.


South Shore Health's Outpatient Rehabilitation Programs are designed to restore function, relieve pain, promote healing, prevent disability and help patients return to the lives they love. Learn more about our comprehensive outpatient program or call 781-624-8140 for more information.