Kathy Bates On Her Most Important Role

When the award-winning actress was diagnosed with lymphedema following successful breast cancer surgery, she took on what she describes as her greatest role yet—advocating for people suffering with lymphatic diseases.

The actress cuts the ribbon to kick off the 2015 California Run/Walk to Fight Lymphedema & Lymphatic Diseases. At 68, Kathy Bates is one very busy actor. Earlier this year she filmed Bad Santa 2 in which she played Billy Bob Thornton’s mom. After that she started work on Krystal, a film directed by and starring Bill Macy and his wife Felicity Huffman. This month, she’s shooting Season 6 of the hit series, American Horror Story. In July, she’ll be in Montreal for another film project. And in September, she’ll receive her very own star on the Hollywood Walk of Fame. “Pretty great year, wouldn’t you agree?” she quips.

A pretty good year in a very good career. In 1990, she won an Oscar playing crazed fan Annie Wilkes in Misery. She was 42 at the time, christened a “late bloomer” by some and a talented thespian by many. In the 25 plus years since, she’s starred in an impressive array of films including Fried Green Tomatoes, Titanic, About Schmidt, andThe Blindside; TV series such as Harry’s Law and The Office and many other memorable roles.

But the role that that she’s most eager to discuss with Practical Pain Management is the one she took on in September of 2014 when she became spokesperson for the Lymphatic Education & Research Network (LE&RN). Although this “part” didn’t come with a script or studio backing, Ms. Bates calls it “the most important role of my life.”   

Worse than Cancer

Ms. Bates has lymphedema—a painful condition that may occur after breast cancer surgery, lymph node removal and/or radiation. The actress has also survived cancer twice. In 2003, she was diagnosed with ovarian cancer, had a hysterectomy and nine rounds of chemotherapy. And then, in the summer of 2012, she learned that she had breast cancer.

“When the doctor told me that I had a tumor in my left breast, I said, ‘make mine a double. Take them both off.  I wasn’t taking any chances,” she says. “Breast cancer runs like a river through my family. My mother and niece had it; my aunt died of it.” But the family history wasn’t in her genes. Both Ms. Bates and her niece were tested for the BRCA gene mutations that may predispose one to cancer. Both tested negative.

Before taking on LE&RN spokesperson duties, Ms. Bates thoroughly researched the problem.  “I needed to educate myself and to understand what I was talking about,” she says. She learned about the lymphatic system, that it clears away bacteria and waste and keeps body fluids in balance. She learned that if it’s not working properly due to injury, damage or surgical removal of the lymph nodes, lymph fluid builds up in the tissues leading to lymphedema, a sometimes severe, often chronic and painful swelling that affects the limbs and other parts of the body and is so painful it is often described as “breast cancer’s dirty little secret”. She learned that lymphedema and lymphatic disease affect an estimated 10 million Americans. 

She’s one of the millions.

Before her operation, the actress voiced her fear about lymphedema to her surgeon. “My mother had a radical mastectomy in the ‘70s and developed lymphedema in her left arm,” Ms. Bates remembers. “After that it was so difficult for her to find clothes that fit,” she explains. “And I had a relationship with someone who had it in his left arm. His arm was very heavy and sensitive to the slightest touch,” she says. “I was very afraid of getting lymphedema and pleaded with my surgeon to remove as few nodes as possible.”

The few turned out to be many. In September of 2012, the surgeon performed a bilateral mastectomy and removed 22 lymph nodes, 19 on her left side, three on her right side. “When I woke up, I immediately felt something strange, a kind of tingling in my left arm,” she says explaining that while both of her arms are affected her left arm is the most troublesome. Swelling soon followed. In her case, the lymphedema came on quickly but onset can happen weeks, months and sometimes years after initial treatment, affecting an estimated 30% of breast cancer surgery and/or radiation patients.  

From Anger to Activism

After the surgery, she “went a little nuts,” she confesses. “I was mad as hell. I think it was the culmination of having been through cancer twice and realizing that now I’d have this condition, this life-long souvenir,” Ms. Bates says. But she quickly clarifies her comment explaining that her “doctor’s focus was to give me the best chance of a cure. The lymphatic system is the road that cancer cells use to travel throughout the body,” she explains. Her doctor “did his job.”

And nearly 4 years post-op, she’s cancer-free and grateful.   

She’s also grateful that another doctor on her team referred her to Emily Iker, MD, of the Lymphedema Center in Santa Monica, CA. Soon after her surgery, she consulted with Dr. Iker who put her on a treatment plan that included in-office sessions of manual lymphatic drainage massage as well as regular sessions in a mechanical sleeve designed to increase lymph flow and reduce swelling. Along with the office visits, Ms. Bates also massages her arms at home and wears compression sleeves daily.

That early intervention was critical, the actress believes. “I think it is important to note that my lymphedema is manageable because I got treatment very early in its development. Otherwise it would have progressed and been much harder to treat,” she says/ Dr. Iker agrees: “Early intervention will lead to a better prognosis.”

Dr. Iker is also one of the millions, a practitioner and a patient. Years ago, while studying to be a surgeon, Dr. Iker was diagnosed with lymphoma. After treatment, she developed lymphedema in her leg. Now, she’s one of a fairly small group of doctors and therapists who specialize in treating this condition. “It is estimated that there is only one lymphedema therapist for every 1,000 people with lymphedema in the US,” says William Repicci, LE&RN’s Executive Director.  

Day by Day

While Ms. Bates lymphedema is mild, it still impacts her quality of life. Certain everyday tasks are harder to pull off without help, she says. She’s able to lift her arms but can’t lift heavy objects. She loves to drive but her arms tire easily. In hot weather, her arms tend to swell. Sometimes, her compression sleeves interfere with the wardrobe or costumes a role requires. That happened when she was in New Orleans shooting American Horror Story. Between the heat and not wearing her compression sleeves, her “arms swelled and it was painful,” she says.

For the aches and pain, she takes Advil (ibuprofen) and the muscle-relaxant Flexeril (cyclobenzaprine), as needed.  “And I self-massage my arms and wear my compression sleeves after that,” she explains. “They are a pain to get on by myself but they really do help. And if I don’t take care of myself, my arms begin to swell.”  

Taking care of herself includes sessions with Dr. Iker and frequent lymphatic drain massages, a treatment not covered by most insurance plans. She’s very aware that her celebrity status affords her access to care that most people can’t get. “I’m really angry about the lack of resources for research and treatment and I’m trying to use my celebrity to do something about this.”

Her celebrity, compassion and commitment to her role as spokesperson has already had an impact. According to Mr. Repicci, “many who suffer from the disease have never been told its name by their physician and others feel so embarrassed by the problem that thy isolate themselves and suffer in silence. Kathy has not only brought awareness to the disease, she has empowered sufferers who say, ‘If a great actress like Kathy Bates can come forward to fight lymphedema, so can I.'” 

Ms. Bates wants more. She hopes that one day medical students will spend as much time learning about the lymphatic system as they spend studying the circulatory system. She wants doctors to inform their patients about lymphedema before surgery or radiation and to make sure that doctors monitor patients for lymphedema and get them the treatment they need early on. “Uninformed doctors lead to patients who are unable to make informed decisions about their health,” stresses Mr. Repicci.

Ms. Bates' participation has helped moved those goals forward by bringing attention to this still hidden condition. She’s taken her celebrity to conferences and to Congress, lobbying to increase funding for research. Recently, Sen. Charles Schumer (D-NY) called for Congress to approve $70 million in funding for lymphedema and lymphatic disease research. And this year, a bill proposed by LE&RN to establish March 6th as World Lymphedema Day and sponsored by Sen. Schumer and Sen. Charles Grassley (R-IA) passed unanimously. Another bill, the Lymphedema Treatment Act that focuses on getting Medicare/Medicaid insurance to cover compression garments will likely “have enough sponsors in the house to garner passage,” says Mr. Repicci.

On June 26, 2016 Ms. Bates kicked off the second annual California Run/Walk to Fight Lymphedema & Lymphatic Diseases to benefit LE&RN. The event raised over $50,000 for education, research, and advocacy.

Her passion for this cause is palpable. Executive Director Repicci recounts a conversation he overheard between Ms. Bates and Dr. Iker. The actress had just finished one of her first television interviews about LE&RN and lymphedema. According to Mr. Repicci, she turned to Dr. Iker and said, “This is why I was put on this earth. I have had such a blessed acting career, but now I get to something about the suffering in the world.”

Ms. Bates echoed those words during our conversation. “I’m doing something real, something truly worthwhile,” she says. “When I go to sleep at night, I think ‘I did something good today’ and I feel better about everything.”

We feel better knowing that some celebrities do their best work off the screen.

Updated on: 10/20/16
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