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NIH MedlinePlus the Magazine, Trusted Health Information from the National Institutes of Health

Feature:
Lymphedema

A Leading Role in Lymphedema Awareness

Actress and director Kathy Bates is a fan favorite thanks to her wide variety of stage and screen roles. She is perhaps best known for her Academy Award-winning performance in the movie Misery, playing an obsessed fan who holds her favorite author captive. Since 2013, she has starred in the American Horror Story series on the FX television network.

After developing lymphedema following a double mastectomy due to breast cancer, Bates has been a strong advocate for those with the disease. A national spokesperson for the Lymphatic Education & Research Network, she shared her story with NIH MedlinePlus magazine.

Actress and director Kathy Bates.
Photo: Keith Muryan

You developed lymphedema after surgery for breast cancer. When did you first experience symptoms? Was it diagnosed quickly?

I started feeling symptoms right away in the hospital. It was a strange kind of pain that moved around in my hands sort of like lightning. I knew all about lymphedema. A man I knew had it and never took care of it. He never had therapy. His arm was heavy like wood. It was so painful he took drugs to manage that and became addicted.

I was terrified of getting it. I had seen my mother’s arm swell when she had a radical mastectomy many years ago. I didn’t know what it was then.

What was your reaction when you got the diagnosis?

My reaction? I flipped out. I was being examined for the first time since my surgery. I was in a lot of pain. When my surgeon told me he removed 19 lymph nodes from my left armpit and three from my right, I went crazy in the examining room and ran out of the building.

How do you manage your lymphedema? How often do you get treatment?

I try to get treatment at least once a month or every six weeks. When I work out of town I have to find a therapist there. I am lucky in that my lymphedema is barely recognizable. Also I have lost 30 pounds and that has helped immensely. I manage it by wearing compression sleeves when my arms hurt. Sometimes being on the computer irritates the crook of my arm. So I self-massage and put my sleeves on. Swimming is excellent. I have to wear my sleeves on airplanes. Sometimes I have to wear them while shooting, but it’s difficult given the style of the costume.

“Lymphatic disease is a life sentence,” Kathy Bates told attendees last year at the NIH Lymphatics Symposium.
Photo: Ernie Branson

You have called lymphatic disease a “life sentence.” What do you mean by that?

Many doctors think that since lymphedema is rarely fatal that it’s merely a cosmetic issue. They haven’t a clue of how many millions of people suffer in this country—10 million. More than MS, muscular dystrophy, ALS, Parkinson’s, and AIDS combined. Those millions suffer far worse than I. They suffer in silence, in shame, and may be ridiculed. It can be fatal. People have lost loved ones due to complications brought on by untreated lymphedema.

This disease affects not only quality of life, but in some cases whether a person can have a life. Infections like cellulitis—which I have had in my arm—can be serious if untreated, requiring frequent hospital stays. And the psychological damage cannot be measured. That is a life sentence in my opinion.

I asked Dr. Stan Rockson of Stanford University, who consults with Lymphatic Education & Research Network (LE&RN), why so few general practitioners know about lymphatic diseases. He said very little time is spent on it in medical school—it’s glossed over in a couple of hours.

Why did you become an advocate for people with lymphedema?

When I discovered that breast cancer survivors who develop lymphedema are just the tip of the iceberg, that there are many different kinds of lymphedema, it was an eye-opener. It is congenital. Sometimes it appears when people are in their 20s and just beginning their lives. When you are about to embark on the best years of your life, your aspirations to become someone wonderful in this world, all of that can end. Can you imagine?

Kathy Bates in character as Iris, manager of the Hotel Cortez, during the fifth season of American Horror Story.
Photo: Frank Ockenfels/FX Network

What advice do you have for others who are facing lymphedema?

Get the best care you can find immediately. You must see a doctor who is trained to diagnose and treat lymphedema specifically. Persevere. Go online and research for yourself. Find a treatment center near you. Unfortunately, it may have a long waiting list. There are not enough trained therapists. Most importantly, a doctor must properly diagnose you before using compression sleeves. Don’t just go out and buy them. If they don’t fit just right for you, you risk worsening your lymphedema.

Many people with lymphedema are afraid to “come out,” so to speak. We want them to come out. To us, to each other, to band together and create their own support groups. At LE&RN, we are encouraging people to send us brief videos just giving their names and that they have lymphedema. We are hoping to create a kind of AIDS quilt, only with videos of the faces of those who suffer. All of this will raise awareness. That is key.

Fast Facts

  • Lymphedema is a disease in which the lymph fluid does not drain properly. It may build up in the tissues and cause swelling.
  • It can happen when part of the lymph system is damaged or blocked, such as during surgery to remove lymph nodes or radiation therapy. Cancers that invade lymph vessels can cause lymphedema. It can also be hereditary.
  • Lymphedema usually affects an arm or leg, but it can affect other parts of the body, such as the head and neck.
Read More "Lymphedema" Articles

A Leading Role in Lymphedema Awareness / With Lymphedema, Early Treatment is Key / Lymphedema: What We Know

Fall 2016 Issue: Volume 11 Number 3 Page 4-6