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Your Breast Cancer Diagnosis Is Not Your Prognosis

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Published on January 9, 2020

Triple-negative breast cancer survivor Maimah Karmo, Founder of the TigerLily Foundation, shares her breast cancer diagnosis story. After receiving a false negative screening 13 years ago, Maimah is now cancer-free and utilizing her own experience to push the needle forward, help instill life-saving habits in women and encourage patients to be their own advocate. Here, she discusses the importance of breast exams and breast health, knowing your body and being able to recognize changes. Maimah also touches on the value of a healthy patient-doctor relationship built on trust and mutual respect. Watch now to hear her perspective as a breast cancer patient advocate.

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Transcript | Your Breast Cancer Diagnosis Is Not Your Prognosis

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Andrea Hutton:

Hi.  I'm Andrea Hutton from Patient Power, and I'm here at the San Antonio Breast Cancer Symposium with Maimah Karmo who is the founder and CEO of the Tigerlily Foundation.  Maimah, thank you so much for joining us today.  

Maimah Karmo:

Thanks for having me.  I'm honored to be here. 

Andrea Hutton:

So let's start by you just telling me your story.  You're a breast cancer survivor.  What—how did you find out?  What happened to you? 

Maimah Karmo:

So my mom taught me at 13 years old about the importance of doing my breast exams, and at 13 years old how many mothers and daughters talk about breast examinations and breast health?  But her thing was I want it to be a be habit where doing breast exams is as commonplace as brushing your teeth or taking a bath, you know, or just hygienic stuff.  So she kept saying to me do them ever month, know your body, and if it changes let me know. 

And I said, "What kind of changes am I looking for here?"  And she goes, "It could be a lump or discharge or whatever."  And this is like way back, like 30 years ago, more than that.  And I said, "How will I know? " And she goes, "You'll know."  And I thought, "Well, whatever, she's my mom.  She's kind of crazy. " But I began a habit that eventually saved my life, because 18 years later I found a lump taking a—in the shower doing a breast exam, and I remember literally her words went through my head.  And I remember me asking her, "How will I know?" And she said, "You'll know," and I knew right away it wasn't a good thing, because it hadn't been there the month before.  

Went to my OB-GYN.  My mother also was a nurse, and she had fostered healthy—having a healthy physician relationship, so my doctors and I weren't just like the kind that I would see once a year.  They were my friends.  And so she took me seriously and she referred me to a breast surgeon.  I got a mammogram.  It came back false negative.  So they said, "Well, you don't have cancer.  Just go home and live your life."

And I said, "No, something's wrong with me.  I have to push for more."  I pushed and I got—I had to push for six months to get a biopsy.  After getting that I learned I had stage IIB triple-negative breast cancer.  So if I had taken my surgeon's advice, I would be dead today. 

And so going through that process, reeling as a young woman, having a 3‑year‑old daughter.  My parents didn't understand.  I had no peer support, no one—there was nobody my age.  You know, advocacy wasn't a thing.  There was no network of young women that I knew of at the time.  It was overwhelming to me, and so I went through a period of depression and fear, but I couldn't talk about it because people were like, well, you're going to be fine.  But I was scared. 

So I just kind of prayed about it, and I said, "How do I utilize what I'm going through?  How do I ensure other young women have the access to—or other mothers and daughters talk about the importance of breast health?  How do I you ensure providers take their patients seriously?  How do I ensure that if you get a screening result that you think isn't right, you need to push?"  And guess what?  Screening has changed since that time to help to detect tumors in denser breasts, so the screening technology hadn't advanced to where I wanted, I needed for it to be. 

So never think that you're wrong as a patient, because maybe what you need isn't developed yet.  Maybe you're the change that the world needs to see.  So I began to think like that and just kind of tell my story from a place of people are out there doing this really great work, but they're all people doing what they think is the best thing.  How do I utilize my experience to push the needle forward a little bit?  

So I just kind of prayed to God and asked how could I use my experience to serve other people, and that became Tigerlily.  It was a blog at first. Once you get out there and people—because I was thinking also there are other women out there who are looking for someone like me, and I need to find them to help them.  If I don't do this now someone could die, you know.  And so I began talking about it and getting out there, and then the next thing people were coming to us for support.  Us meaning me, myself and I.  So I was still working, and it just honestly just grew from a blog to what's now a national organization. 

Andrea Hutton:

And what is the national organization?  Who are you serving? 

Maimah Karmo:

So our mission is support young women before, during and after breast cancer, and so we're into disparities of age, stage and color.  So we reach women all over the country.  Our programs are primarily digital, because women are on their phones.  They're not looking for brochures anymore or advertisements, billboards.  They want to be on their phones engaging.  So our programs reach—we have text alerts.  We have online self‑paced courses on breast examination or knowing your body, being your best advocate.  

We do online advocacy training.  We do—we have a New Normal Journal.  We have an amazing mets program called MY LIFE.  Because really it's about living your life even if you're dying of breast cancer.  Some women live three years, some live 20 years. 

And we recently launched our Young Women's MBC Disparities Initiative where we partnered —we got 20 women from the cities that are most underserved in the country where women of color die the most, and we brought these women to San Antonio to immerse them in science and to help them to see that even though there have been health inequities and injustices we have to come to the table together as a force or else we're going to continue dying of a 40 percent higher death rate.  We wanted them to meet with scientists and clinicians and understand that people are here with them working for them.  

And we wanted the scientists to also see their side of the story.  Here's why they're not engaging in trialsHow do we build the bridge?  How do we share our thoughts and our fears and the angers and the hurts and really listen to people of color—women of color and learn what disparities really mean.  Financial disparities emotional disparities, mental health disparities, disparities of having access to transportation and things like that, but more so disparities of like there's been historical mistrust based on experimentation, and that pain is still there.  How do we just discuss that openly and then start to build healing and transform the outcomes for people of color?

And so we—we're always kind of on the cutting edge of things.  I think for me I've learned that the more that I ask questions and say, this is really good, but it's not really working.  How do we change how we are thinking?  Let's get out of the box.  That's how you create change, and that's what we do as an organization. 

Andrea Hutton:

So for your personal experience, your mom was kind of a trailblazer, because at that time you're saying people weren't really having that conversation with their kids. And you also had a relationship with your doctors, which is not that common, particularly in the African‑American community.  Can you talk a little bit about that? 

Maimah Karmo:

My mom, she was the head of the Liberian National Nurse Association, Liberian Nurses Association, and so she met a lot of women who were- maybe even in Liberia at the time who were underserved, who were women who were poor, and she could see the things that they thought and the way they perceived healthcare and how their mothers talked about healthcare.  So I think being that we were in West Africa and even in that space there were women who she met, who she was training to become nurses, who had mindsets that were limiting in a sense, kind of gave her the forethought to think, well, we need to change these people's thinking, and we need to educate our girls.  We can't wait until it's too late. 

That's where she was coming from and teaching me that.  And being a nurse and having doctors as friends I think—she said, "Your doctor should be your best friend because she's—your doctor is one of your biggest advocates, and as you get older your body will change, and you'll have other issues and other challenges, and you want a doctor who is going to believe in you and trust you beyond the test, before the test and beyond the test."

And so I didn't have any fear of calling my doctor and saying, "Can I come in for a breast exam?" And once they felt the lump she said, yeah—she called me Bud—"Hey, Bud, yeah, you need to go for it, go get a mammogram."  And so she advocated for me to get the screening.  So having that patient relationship that will advocate for you is really important.  

And so even though the word "advocacy" wasn't in my vocabulary at the time what she was doing is my mother taught me how to advocate.  The doctor taught me how to advocate for myself with the surgeon, and I knew enough about my body that I knew that something was wrong, so that intuition, you know, is so important.  Intuition is not just some kind of esoteric mumbo jumbo.  It's a gift, and when your gut says something is wrong, follow that.  Follow it until you have the right answer. 

And in my advocacy work it's been the same thing.  It's been looking at doctors as being people too that have learned a standard of care, it's what they've been taught for eight to 10 years, and they're doing what they think is right.  And our job as patients is to say, "Well, I think you're doing a great job, but have you considered this or that or that?  Have you thought about doing it this way?  Have you thought about looking at the patients when you're talking to them and hearing her unique story, not looking at statistics?"  

I think the world has changed in a way that is powerful and there are so many good things happening, but doctors back in 1800s, whatever, maybe even past that time, they were healers.  They would touch the patient.  They would connect with the patient, and they would feel you.  They come to your homes, they would spend time with you.  

And when I got my first—went to see my first, the first surgeon, he looked at me and said, "Let's just cut them off." And I'm like, "What?  Can you give me a second to think about what you're talking about here?"  I'm in shock.  And then I—I fired him, of course.  And then my doctor that I picked, I remember going in there, and I was so scared I was shaking.  I was like shaking like a leaf.  And I went into the office, and I got undressed, and I just sat there. And I had my knees under my chin, and I was just like shaking in the gown.  I was so scared. 

And she just walked in, and she had tears in her eyes, and she said, "I got you."  And she just—she just—she held my hand and she just—I couldn't hold her hand.  She held my hands like this, and then she just held them, and she's like, "Look at me.  Look at me and breathe.  I got you.  I got you, and you have this.  You will get through this, but you're going to find your power." And she just sat there with me. 

I remember it was like towards the afternoon.  She just sat there with me.  She wasn't checking her phone.  She wasn't rushing to the next patient.  She just sat there, and then when we were done talking my feet were on the ground.  And that was so—I always want to cry when I think about that.  I felt like she gave me—she's like—I was this little, shaking little girl, and she got me to put my feet on the ground and breathe. 

And that's what we want doctors to give patients, that sense of you're safe.  Whatever your diagnosis is and your staging is, whatever the outcome might be, you have a safe person on who's your best advocate along with you that will guide you through this journey.  Don't talk down to me.  Don't talk around me.  Don't talk about me.  I am a human being that happened to have cancer.  And so that's—a lot of our work is about compassion and transformation and connection and love. 

Andrea Hutton:

So if you had one piece of advice to give a woman who is in that first step, in that first conversation with their doctor what would it be? 

Maimah Karmo:

Everything's possible.  No one woman's story is the same.  So, I mean, I have friends who have been metastatic for 20 years, some for three and who didn't make it.  I am triple-negative.  I am 13 years cancer‑free, which is pretty awesome.  I am a woman that came to this country as an immigrant at 15 years old, and I've now built a national organization because—based on sheer faith.  I didn't have money, training, a board.  I didn't have anybody holding my hand literally.  So anything's possible. 

So don't take the diagnosis—don't take the diagnosis for your prognosis.  Don't accept that what they're telling you is going to be—like you're going to live only three years or two years.  Own your outcome, learn the facts, and care for yourself.  One thing cancer taught me—well, a couple of things, are self-compassion, self-care.  We're too hard on ourselves, and when you get the diagnosis you want to know everything, and you're overwhelmed.  

So build your tribe.  Trust your gut.  Love yourself.  Be patient with yourself, and trust that when you have all the facts and you take that path that whatever the outcome is live on your own terms.  My theme was I didn't know if I was going to live a year or two or three, but I know that whenever I died the world would know I was here.  And so make that your legacy, that whatever happens you will make the world know that you were here, you would have changed that diagnosis for something that's beautiful and powerful and catalystic.  

Andrea Hutton:

Well, thank you.  You have absolutely done that. 

Maimah Karmo:

Thanks so much. 

Andrea Hutton:

Thank you for being here with us. 

Maimah Karmo:

Thanks for having me. 

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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