Kathy Bates Reflects on Life With Lymphedema

The award-winning actor and cancer survivor shares her new outlook on life

Late in the summer of 2012, Kathy Bates felt like she was nearing rock bottom. Even so, she hoped for some kind of sign from the universe that her life was about to get better.

Then a bird crashed into her window.

The award-winning actor was still reeling from NBC's spring cancellation of her series, Harry's Law, just months before when she started noticing strange pains in her abdomen. "And that past Christmas, just before we were canceled, I had been really exhausted," says Bates. "But I just chalked it up to all the work on the show, and I let months go by."

The new pain was finally enough of a red flag to send Bates, a survivor of ovarian cancer in 2003, to her doctor, who found that she had stage II breast cancer. With a strong family history of the disease -- both her mother and aunt had been diagnosed with breast cancer, and her aunt had died of it -- Bates barely hesitated before deciding on a double mastectomy.

She continued to struggle with pain after the July 2012 surgery, which also required the removal of 19 lymph nodes. "One of the tubes they put in on my left side must have been pressing on a nerve," she recalls. "The doctors were very leery of prescribing too much pain medication because of the risk of addiction -- so I was in a lot of pain for weeks and weeks -- and I was very angry, both about my diagnosis and about the show being canceled. It was an awful time."

Finally, a beautiful sunny summer day dawned. The painful tubes were out at last. Bates was sitting at her patio, enjoying the weather and hoping that things were finally looking up, when a tiny finch flew straight into the plate glass doors and crashed to the pavement.

"I picked up this little bird," she recalls. "His head was hanging off my palm, and his feet were drawn up in agony. I sat down holding him and wishing so much that there was something I could do. After a minute or so, lo and behold, this little bird flipped over in my hand. I could feel his tiny claws. His head was up, and he was panting a little bit."

Bates' niece, a breast cancer survivor herself, brought out a paper cup of water. The bird drank from it and then flew away. "My niece said, 'Are you getting the message yet?' I asked what message she meant," says Bates. "She said, 'Life goes on. You've been given another chance.' That was a very powerful lesson."

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A New Calling

Bates, now 69, has made the most of it. Not long after the little bird flew off, she received a call from American Horror Story creator Ryan Murphy, who cast her as a character "five times worse" than her infamous, Oscar-winning obsessed fan Annie Wilkes in Misery.

Bates won an Emmy in 2014 for her utterly terrifying portrayal of 1830s New Orleans socialite and serial killer Delphine LaLaurie in American Horror Story: Coven. The series put her career in high gear again: She's earned Emmy nominations for her roles in the most recent two seasons, "Freak Show" and "Hotel," and her highly anticipated new comedy Disjointed -- in which she plays the owner of a Los Angeles cannabis dispensary -- premieres on Netflix on Aug. 25.

At the same time, Bates has found a new calling as an advocate for cancer survivors and others coping with a little-known condition called lymphedema. The body's lymphatic system transports lymphatic fluid, which contains infection-fighting white blood cells, throughout the body. When this fluid doesn't drain normally -- most often, when lymph nodes are removed or damaged after cancer surgery -- debilitating, disfiguring swelling can happen.

Bates began noticing the swelling shortly after her mastectomy, and she knew right away what it was. "My mother had had a radical mastectomy -- they took everything -- and her arm swelled terribly. She was always a very smart dresser and wore very nice clothes, and after the surgery, she couldn't fit into them anymore," she recalls. "It was a real slide into her feeling 'less than.' And so I remember getting hysterical when, even in the hospital, I noticed strange pains in my hands and then discovered that my arms were swelling."

There's no cure for lymphedema, but it can be treated with a complex program of physical therapy. "I had to have my arms put into these pneumatic sleeves that feel like a boa constrictor," she says. "One arm at a time, two times a week. Now I've lost quite a bit of weight, and that has helped considerably, but I still have to be careful. I can't have a lot of salt or alcohol, I have to stay out of the heat, and I'm not supposed to pick up heavy things."

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Throughout her career -- which also includes a Tony nomination for her 1983 role in Night, Mother and star turns in Fried Green Tomatoes, Titanic, and About Schmidt -- Bates had avoided lending her name or face to any of the many charitable organizations that approached her.

"They'd say, 'We can just put your name on the board, you don't even have to come to meetings.' But I don't roll that way," she says. "I'm not going to attach my name to something unless I'm passionate about it."

Lymphedema Lessons

She found that passion when she learned just how many people also struggle with lymphedema. At least 10 million people in the United States have the disease and other lymphatic conditions -- more than the number who have multiple sclerosis, Parkinson's disease, muscular dystrophy, ALS, and AIDS combined. Worldwide, that number reaches the hundreds of millions.

"And yet many doctors are not educated about this disease," says Bates, who's doing her best to change that as a national spokeswoman for the Lymphatic Education & Research Network (LE&RN), which funds promising research in the field, provides scholarships for lymphedema therapists, sponsors an international patient registry, and educates patients. "I've been told by doctors affiliated with LE&RN that in 4 years of medical school, future doctors spend a total of 15 to 30 minutes on the lymphatic system."

One of Bates' mentors in her new public advocacy role is Stanley Rockson, MD, the Allan and Tina Neill professor of lymphatic research and medicine at Stanford University. "Until very recently, we haven't had any medical options to treat lymphedema -- the only option has been physical therapy," he says. "But now we have a clinical trial underway of a drug that looks like it may reverse a lot of the damage in lymphedema. We're also making progress in surgical approaches to rebuilding and repairing the lymphatic system."

Equally important, Rockson says, is prevention and early detection. "If you've had one sentinel node removed, you have about a 6% lifetime risk of developing lymphedema. That risk goes up to about 15% if you've had more than one removed -- and it continues to increase based on how many nodes have been taken."

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He advises anyone who has had lymph nodes removed to take precautions like Bates: avoiding cuts, infections, and burns (including sunburns) on the affected side of the body; ramping up any exercise program gradually and with a doctor's supervision; and wearing pressure garments during exercise and air travel.

Bates' decision to speak out publicly about lymphedema -- she's met with members of Congress, appeared at LE&RN events, and even invited a CBS News correspondent to come along on one of her doctor visits -- is part of a whole new outlook on being a cancer survivor.

"Back in 2003, when I had ovarian cancer, my agent told me not to tell anyone about it," she says. "Even my gynecologist, whose husband worked in the business, warned that I shouldn't come out with it because of the stigma in Hollywood. So I was very careful. But then I saw Melissa Etheridge doing a concert and just wailing on her guitar with her bald head, and I thought, 'Wow, I wanna be her!' So when the breast cancer diagnosis came, I knew I wanted to be honest about it."

Today, if Bates doesn't have to wear her breast prostheses for a role, she doesn't put them on. "I've joined the ranks of women who are going flat, as they say," she says, laughing. "I don't have breasts -- so why do I have to pretend like I do? That stuff isn't important. I'm just grateful to have been born at a time when the research made it possible for me to survive. I feel so incredibly lucky to be alive."

Genes and Family History

Despite the strong history of breast cancer in their family, Bates and her niece were surprised to find out that neither of them carries mutations in the BRCA gene -- the first gene to be identified with breast cancer -- or any other known cancer genes. "That doesn't mean we weren't at increased risk," she says. "It just means that genetically, they have not broken the code. It's not a get-out-of-jail-free card if you test negative."

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The work to identify genes associated with hereditary breast and ovarian cancer is ongoing, says Julia Smith, MD, director of the breast cancer screening and prevention program at NYU Langone Medical Center in New York -- and many mysteries are yet to be solved.

Three things to know about hereditary breast/ovarian cancer:

  • The BRCA gene accounts for 5% to 10% of breast cancers, and researchers have also identified other mutations, but there are likely many more, Smith says: "Five years from now, we'll probably know of at least twice as many of these genes as we do now."
  • If your family has a strong history of breast or ovarian cancer -- meaning that close relatives like a mother, sister, aunt, or grandmother have had one or both diseases -- you should see yourself as someone who's more likely to get those cancers, no matter what a genetic test may show.
  • To find out more about these risks, speak with a genetic counselor who has expertise in risk assessment and can help you understand what testing means for you. You can find a counselor through the National Society of Genetic Counselors (www.nsgc.org). Facing Our Risk of Cancer Empowered (FORCE, facingourrisk.org) also offers support for women and families affected by hereditary breast and ovarian cancer.

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WebMD Magazine - Feature Reviewed by Brunilda Nazario, MD on April 06, 2017

Sources

SOURCES:

Kathy Bates, actor, spokeswoman, Lymphatic Education & Research Network (LE&RN).

Stanley Rockson, MD, Allan and Tina Neill professor of lymphatic research and medicine, Stanford University, Palo Alto, CA.

Julia Smith, MD, director, breast cancer screening and prevention program, NYU Langone Medical Center, New York City.

Lymphatic Education & Research Network (LE&RN): "Lymphedema and Lymphatic Diseases Affect Millions and Concern Us All."

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