Kathy Bates had a double mastectomy 5 years ago, hasn’t had reconstruction

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Kathy Bates, 69, is hoping to raise awareness for lymphedema, a condition where part of the lymphatic system, which transmits white blood cells, gets blocked in the body. It can cause pain and swelling. In Kathy’s case she developed it after she had both breasts and 19 lymph nodes removed during surgery for stage II breast cancer in 2012. She gave an interview to WebMD to discuss lymphedema, which often affects cancer patients. Kathy was familiar with the condition before she developed it because her mother, another breast cancer survivor, also suffered from it post-surgical intervention. Kathy told WebMD that she cares deeply about this cause because it affects over 10 million people in the US and because doctors are woefully uneducated about it. As treatment she wears pneumatic sleeves, gets physical therapy, and is careful to stay healthy because lymphedema can decrease your body’s ability to fight infection. She also said she hasn’t had reconstructive surgery on her breasts and just wears prosthetic breasts when she requires them for a role. I really enjoyed reading this interview and how straightforward and committed she is to this cause.

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.”

“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…”

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.”

[From WebMD via Daily Mail]

Also, Kathy said that she has a niece who had breast cancer, and an aunt who died from it, but surprisingly both Kathy and her niece both tested negative for the mutation in the BRCA gene which is associated with breast cancer. Kathy had ovarian cancer in 2003 and kept it quiet on the advice of her agent. When she heard that she had breast cancer she decided to go public, partially because she saw Melissa Etheridge be open about her cancer struggle.

As for Kathy not wanting to get a breast reconstruction I get it, especially when she was already dealing with lymphedema. Why bother getting more surgery when it’s just cosmetic and you’re dealing with pain from an associated condition? That’s no shade on any woman who makes that choice, it’s just that – a choice, and she made the one which felt right to her. I admire her so much and am glad she’s doing well now.

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44 Responses to “Kathy Bates had a double mastectomy 5 years ago, hasn’t had reconstruction”

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  1. Lenn says:

    I had breastcancer two years ago and I felt and feel the same way. Also I didn’t wear a wig when I lost my hair because I very strongly felt like I didn’t want to pretend. A wig just felt like I was hiding something just so the rest of the world wouldn’t be shocked.
    Same about the breast I lost.
    I will say though: to each his own. Everyone deals with cancer and the losses that come with it differently. It’s highly personal.

  2. lightpurple says:

    Thank you, Kathy! And all the best to you going forward.

    My left arm is basically useless and swells up in the heat, on air planes, and if I run or go hiking – I wear a sleeve when I fly or exercise. Cannot have shots, IVs or blood pressure cuffs on that arm. Have permanent numbness in part of my armpit and the triceps. During flareups, the whole hand can swell or just some of the fingers. The limp node biopsy also caused nerve damage and as a result, I have constant pain in my neck and shoulder blade and can’t turn my neck fully or raise my arm fully. And this is due to the lymph node biopsy, I didn’t have a mastectomy. With a mastectomy, the situation would be worse. A double mastectomy would affect both sides of the body like this. These are things to consider when deciding between lumpectomy and mastectomy.

    • Sixer says:

      We so need to normalise conversations about all this stuff, don’t we? Otherwise everyone ends up discovering it all as though they were the first person to whom it had ever happened.

      Sympathies, my lovely.

      • lightpurple says:

        We really do. And in as matter of fact way as possible. It would really lessen so much of the confusion and bewilderment people go through. Tattoos? I need to have tattoos? You want me to put corn starch WHERE? And knowing what the after effects may be should really play a part in treatment decisions.

        And hugs right back at you. You’ve had your share of struggles in this battle.

      • Sixer says:

        BLACKHEAD effing tattoos! Remember not to squeeze them!

        Sorry, no washing your pits for six weeks.

        When we say if you get a mouth ulcer, phone us straightaway, we mean straightaway Sixer. That’s why you currently can’t eat because your mouth is full of them.

    • Who ARE These People? says:

      I am so sorry you went through, and continue to go through this. You are our shining star of moral rectitude and legal insight (and biting wit about Princess Ivanka) and I can only hope that the pain and discomfort diminish with time. I know they might not, but maybe there will be better times ahead so you can use your skills with greater frivolity.

      Also yes we all need to be more matter of fact about things. Bodies do what bodies do and we have to figure out how to get along. (I’ve got things head to toe, plus system issues, no cancer but plenty of risk factors and family history and screenings so…just another typical person!)

    • Abbess Tansy says:

      I’m so sorry you’re having trouble with this. A friend of mine has similar issues with her dominate arm and hand. She wasn’t ambidextrous so she had to switch a lot. I have a relative whose leg swells terribly and wears compression on it at some point everyday.

  3. Sixer says:

    I was warned about this condition when I had some lymph nodes removed for lymphoma. Thankfully, never suffered. It sounds dreadful.

    I always wonder whether or not I would go for reconstruction if I ever had to have a mastectomy. I’m inclined to think probably not but as Lenn says above, you can never know until it happens and it’s intensely personal with no right or wrong answers.

    • Who ARE These People? says:

      Had a lymph node checked once for swelling (negative) and didn’t realize the risk.

      At my age I might not opt for reconstruction either – more surgery, pain, risk, anesthesia (not good for cognitive aging) and greater ease of movement. Would have to learn how to move differently but it would be a bit easier to stay straight, jog, etc. But I also agree that you never know until you’re in a situation…I might feel entirely differently. There’s no right or wrong, but I’m glad more women feel they can live in this world comfortably without breasts.

      • Sixer says:

        Exactly. I always think that I wouldn’t because I am generally lacking interest in all things appearance and the thought of a scar seems preferable to the thought of adding a body part that isn’t “mine”. But who knows how I would actually feel if it came to it? Not me. Everybody should be able to make the right choice for them, and be able to talk about it without judgement from others.

    • Jaded says:

      I had breast cancer last fall – partial mastectomy and axillary lymph node removal. I too have numbness under my arm and in my triceps area and some residual tightness across the incision areas but am pretty much back to normal with no chemo or radiation required. I will be getting reconstruction early next year as it’s free – to each her own I guess. I had a strange experience with lymphedema though. I got tendonitis in my right big toe going a bit too hard on some yoga and Pilates stretches and my whole friggin’ foot – ankle and everything – swelled up like a balloon and was on crutches for a month. Doctor said it was lymphedema and I had to wear a elastic support for weeks. That was in February and my foot and ankle are still a bit tender.

      Anyway, to all you lovely CBers who have gone through this cancer b*tch, you are all brave, wonderful and strong women and I wish you all continued health and happiness! TOWANDA!!!

  4. smcollins says:

    Kathy Bates: National Treasure. Love her and the awareness she is bringing to this. She usually winds up being my favorite part of a movie (Primary Colors is a prime example). Her Annie Wilkes was of course phenomenal, but her smaller supporting roles are always a standout as well. I wish her continued health (69?!) and success with continuing to shed a light on lymphedema and finding better treatments.

  5. Mildred Pierce says:

    I’m sorry she is ill and had cancer but what she says about not having breast reconstruction makes it seem those who have done it are shallow. She could have said to each their own or something. I know she was speaking for herself but I imagine another woman who made the decision to have reconstruction feeling judged after reading this.

    • Sabrine says:

      I never thought at all that she was judging women to be shallow who did have reconstruction. This is a very personal choice and she was just telling her story. My decision not to have reconstruction was based on a couple of factors, not wanting to have additional surgery but especially my age which is similar to Kathy’s. If I had been 40 or even older, I would have given reconstruction some serious thought.

      • Lenn says:

        I was 37 and didn’t do the surgery. Also because the very last thing i needed was to go back to the hospital for another surgery. Reconstruction surgery is an extensive process. You don’t just go in and get new boobs. In many cases they have to take time to stretch the skin beforehand and afterwards infections and complications can occur. It takes quite some strength to go through this after your are left exhausted and broken from chemotherapy and other treatment.
        But again: if you do have the strength for this, I completely admire and respect that. No judgement whatsoever.

    • CynicalAnn says:

      I don’t read it like that at all. She sounds like she doesn’t want to deal with it and is just relieved and grateful to be alive. People do what they want/need to do. One person’s experience and choices do not negate others’.

    • Lalu says:

      I don’t think she sounds judgey at all. It’s actually very refreshing to hear a woman say she can be a woman with or without her breasts. That our breasts don’t define us. This just makes me love her even more.

    • Who ARE These People? says:

      I didn’t read it that way either. She sounds fair and understanding. Saying what works for her isn’t the same as judging others for wanting something different.

    • Jenns says:

      She made a choice for her and her body. She is telling her story only. Nowhere did she mention that other women should do the same.

    • marjiscott says:

      Well, it’s hard for you to empathize perhaps because you have no frame of reference? Perhaps you might have someone in your family , or know someone? Hollywood is shallow, a unreal place that deals in fantasy. No real world problems are ever treated as real life issues that are publicised.
      I say that because my family is from Hollywood, and I do acting part time. I have a Agent call back on Friday. Do I tell him I have had Cancer, have currently lymphadema in my legs and stomach?
      No. Not if you want to work.
      Don’t blame Kathy Bates. It’s the Industry.

      • Sarina says:

        I thought you would have to disclose all that to the Producer for insurance/clearance?

  6. Evie says:

    Hooray for Kathy Bates! Thank God she knew what she was dealing with because of her family history with her Mother. She was able to act quickly. I’m sure that her decision to go public will inspire many women to take charge of their health.

    On a shallow note: Kathy looks great — glowing and healthy. And her weight loss is evident. Wish her continued good health.

  7. Honest B says:

    She’s fab. I love her!

  8. Jenns says:

    Kathy Bates is my favorite actor. And I’m glad she is speaking out about this.

    I just had the testing for the BRCA gene. The results were negative, but while I was waiting for those results, I did a lot of research on mastectomies. I read quite a few women who went through them just to avoid getting cancer. Those stories are reminders how important it is for women to have the ability to make the medical choices they want for their bodies and also have full access to healthcare.

    • Tinkerbell says:

      I went through breast cancer a couple years ago. Our family is like Kathy’s. No BRCA, but doc’s agree something genetic is going on. My sister’s then both had preventative mastectomies. I SO wish I would have done that. My double mastectomy and reconstruction weren’t that big of a deal for me. The chemo on the other hand has been not great. I now have chemical sensitivities I’ve never had, etc. So glad I haven’t developed lymphedema!

      • Tiffany :) says:

        Right now doctors are aware of BRCA1 and BRCA2…but I have a feeling there are BRCAs 3-? that are waiting to be discovered.

  9. Artemis says:

    A true Queen. She would be a queen regardless of the choice she made as like people said: to each their own. But the fact that she’s opening a conversation about a less conventional choice, is just beautiful.

  10. Anitas says:

    Love this woman, she’s amazing. I suffer from congenital lymphoedema affecting my right foot and ankle. It gets worse in heat and with activity, and now that I’m pregnant, but even with plenty of rest and wearing compression socks it never fully goes down. Finding shoes (especially boots!) that fit is such a nightmare, and I only ever wear maxi dresses and long trousers. I so understand when she says doctors are just not educated enough about this illness. It took me years to have it even diagnosed. After many tests showed there’s nothing wrong with my kidneys, heart, veins etc, the fallback advice from the doctors was just “drink more water and eat less salt”, none of which helped one bit.

  11. third ginger says:

    One great human being, on and off screen. People are so quick to judge, especially on social media, about problems they have not experienced. Kathy is doing a great service. The only reason I knew about this condition is that I am a writing coach-tutor for graduate students[ some in nursing] as part of my job as an English professor.

  12. Nancy says:

    I fell in love with her in Fried Green Tomatoes, she scared the wits out of me in Misery, was the bad ass Molly Brown in Titanic and in real life, brave, strong, heroic, and quiet in Hollywood, are you kidding me. Profile in courage. I posted the other day about Maria having a brain tumor and said life is dodging landmines. We worry about this and that, when in reality, the only thing that matters is our health. Fight the fight Kathy, you’re simply awesome.

    • third ginger says:

      Have you seen any of her work in AMERICAN HORROR STORY? This show is a master class in acting by Jessica Lange, Bates, and goddess Angela Bassett. Also, the incomparable Sarah Paulson.

      • Nancy says:

        I haven’t ginger. I have a baby, two kids and a job (fortunately for me, I work at home for the time being) so I have to shove a whole lot of living in a day. Everybody tells me how great it is though, and it is on my bucket list! I love the sound of Kathy’s voice, if that makes sense, and would listen to her read the phone book if they still exist!

      • third ginger says:

        You are one busy lady. My best to you.

    • Juls says:

      Also, I have to add: Delores Claiborne. Fantastic movie. Kathy is a Queen and an icon.

    • Abbess Tansy says:

      Oh I loved her in Fried Tomatoes! That scene where she runs her car into those girls’ car is priceless. Wonderful actress and good person.

  13. Birdix says:

    I know this isn’t a solution, but Moving for Life is an organization that gives free or low-cost movement classes, designed for cancer patients/survivors. They incorporate movement designed to help with lymphedema.

  14. lucy2 says:

    I’ve always loved her as an actress, she’s amazing. I’m sorry she’s gone through so many health issues, but glad she’s doing well now.
    I think everyone has to do what feels right to them, and I’m glad she’s standing up as an example for people who choose not to have reconstructive surgery. It’s an important decision that shouldn’t be up to anyone but the patient.

  15. Marianne says:

    She may also have decided not to get surgery because of her age. I think more young people have that societal pressure to look a certain way.

  16. Suzi says:

    I also had breast cancer in 2012. It was stage 1 and I ended up having a lumpectomy. Luckily, I have not had to deal with lymphedema. I was also tested for the BRCA gene. The woman who assessed me was very surprised when I tested negative. She thought for sure I would test positive. Both of my grandmothers, a great aunt, and another aunt had breast cancer, so I have a strong family history. If I would have tested positive, at that time I was going to have both breasts removed and reconstructed. Not sure if I would opt for reconstruction now. Unfortunately I am dealing with permanent nerve damage in my feet from the chemo. My feet are numb and it is also painful. I no longer can wear heels because they cause so much pain. I also can’t wear flip flops because I can’t feel the shoes to hold them on. I hate getting pedicures now because it is so uncomfortable to have anyone touch my feet.
    Foot massages are out of the question! I count my blessings that at least I am alive!

    • Nancy says:

      I hate hearing stories like your Suzi. Life is so cruel and it is so hard living when things are going smoothly. I just prayed for you. You have been given quite the load and still count your blessings. You sound like a sweet angel. Very happy you tested negative for the BRCA gene, great to fail those tests. Someone was looking out for you considering your family history. I wish you nothing but happiness and hope the worse has come and gone and one day you can put your feet on velvet like a queen without pain.

  17. PhatGirl says:

    WOW she looks fabulous in that red coat! Getting better looking with every year.
    I just love her.

  18. Dumbledork says:

    As someone mentioned above, the belief is that there is a BRCA 3, 4 and so on that just haven’t been found yet. And it’s heartning to hear that so many doctors have been supportive of the preventative mastectomies. I tested negative for BRCA 1 and 2. My mother did as well, yet she and her mother both had breast cancer. My mom lost her fight with ovarian cancer almost 10 years to the day she beat breast cancer. She was a true warrior. Had I tested positive, I would have had surgery. And stated as much before the test. My female gyne was supportive, my male gyne not so much. Said it was not necessary. So I’m so happy to hear Kathy talk about this. Give every stinking detail, and let everyone know it’s normal, and not something we should shy away from talking about. And to the brave cancer fighters of celebitchy, my wishes to you for continued good health. Cancer is a bitch.

  19. Wren says:

    I have always liked her. Good for her that she is making the choice that feels best for her. I am glad she is doing better now. She looks great!

  20. Msw says:

    Lympohedema is a tough condition to live with. If you really want to get mad, Google lympohedema and Medicare coverage of compression garments.