Everything Cancer
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We talk about Everything Cancer.
Everything Cancer
Kiki Wooten’s Breast Cancer Journey: Beautiful Strength in Being Flat-Chested, Healing the Past and Embracing the Future
In compelling episode 38 of Everything Cancer, we meet Kiana—Kiki—Wooten, a breast cancer survivor who went from stoic and shy to modeling as a vibrant flat-chested breast cancer survivor.
Diagnosed at just 34 years old, Kiki’s journey through invasive ductal carcinoma was filled with life-altering challenges—sepsis, difficult reconstruction choices, not being heard, and inadvertent missteps in communication with her daughter when unexpectedly hospitalized during the pandemic.
Her story reveals the courage required to choose a flat chest after multiple complications with implants. Through it all, Kiki found strength in self-advocacy and the support of her husband and daughter. She shares how breast cancer not only changed her body but also reshaped her life, acting as a catalyst to confront past traumas and regrets, emerging as a more compassionate and open person.
Kiki’s voice, grounded in her experience and challenges as a Black woman navigating the healthcare system, speaks to the power of resilience and of the shared experience with other survivors. Tune in to hear her inspiring message of hope, healing, and the strength to embrace both scars and life after breast cancer.
Email KiKi, Kiana at thebreastdecisionfoundation@gmail.com
Kiki’s LinkedIn linkedin.com/in/kiana-wooten-4700a12a4
The Breast Decision a book by Kiana Wooten
A national women’s health and oncology organization providing education, awareness, advocacy and hands-on support to young women (15-50) before, during and after cancer.
Thank you for listening. We would love to hear your thoughts about this episode. We want to hear from you: what topics you would like to have discussed or a guest you would like to see featured in future episodes. This show is here for you. Email us at EverythingCancerPodcast@gmail.com
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Here is the link for the acclaimed cancer self-advocacy guide by Jill Squire, host of Everything Cancer Podcast
"Cancer Journey Guide and Journals: Empowerment in Diagno...
Hello everybody and welcome to the Everything Cancer podcast. We have a model guest with us today and I mean that figuratively and literally. Kiana Wooten who I have fallen in love with in the conversations I've had with her and I think you will too. Kiana has had quite the journey in getting here into the studio seat in the Everything Cancer podcast.
And I think you will find her journey that she's going to share with us, riveting, heartbreaking, and inspiring all at the same time. And Kiana, I have nothing but admiration for you. Welcome.
Kiki Wooten (00:45)
Thank you so much, Jill, for having me. It's a pleasure to be here. I'm excited about this conversation.
Everything Cancer (00:53)
I'm so glad you reached out and I'm so honored that you're spending time with us and our audience. I think you will end up inspiring a lot of women who have difficult choices to make and a lot of people who have difficult choices to make about surgery. And I believe that you will inspire many and you're probably going to have a lot of people who will be nodding their heads as they're listening to you.
saying, I've been there. And so thank you. It's an absolute honor to have you spend time with us here today. So first I want to hear about your hat that is on your LinkedIn profile, your big vibrant pink hat. Where did you find it and what does it symbolize for you?
Kiki Wooten (01:43)
Well, actually, I was going to a photo shoot and my best friend, her cousin is a photographer and I had no idea. She actually got me the hat. She had no idea what I was wearing. I didn't tell her anything about my outfits and we're shooting, shooting. She's like, you know, you're missing something. She's like, you know, something that will really like bring out your face and you know, your bare chest. And I'm like, okay. She's like, I got you this hat.
and she just put it on me. And I was like, what in the world? I'm like, this hat is bigger than I am. And she's just like, just look straight and just pose. And that's what I did. And that's the picture that you see on the cover of the book. And I noticed that once I started posting those pictures, people recognize me from the hat. So I became Kiana with the pink hat.
Everything Cancer (02:38)
Yes.
Kiki Wooten (02:42)
And yeah, and you know, it's symbolic to me now. I didn't know how symbolic it would be then. So when I'm posting, a lot of people ask me like, do you still have that hat? And I'm like, it wasn't mine. And no, I don't. But they love me in that hat. And I have to say I hate pink. I've always hated pink pink.
Everything Cancer (02:45)
You have.
Kiki Wooten (03:09)
was not my original color, but it has become essentially, you know, my color. And that really is the story about the hat. I had no idea that she even had the hat for me for the photo shoot. And it went so well with the outfit.
Everything Cancer (03:27)
Yes, yes it did. And you say people love you in your hat, but we're all going to love you without the hat today and after today. And obviously people, you're welcome. And obviously people do because they keep asking you to come back and have you participate in their events. And you're just an amazing representative for black women who are survivors and
Kiki Wooten (03:36)
thank you.
Everything Cancer (03:53)
women who are survivors of breast cancer and women who are survivors of trauma. so many levels.
You went through a lot before you made the choice to be flat -chested, right? And can you share your journey to this choice with our audience? Because it was quite a journey.
Kiki Wooten (04:13)
It was so, initially I felt a lump, which I honestly just thought was a cyst. Since I was a young adolescent, I would get cysts underneath my armpits or even in my boob area. And it was always normal for me. However, after a few months,
I noticed that the cyst didn't go away. And it really was because of my husband that I even went to the doctor because, you know, for me, I'm like, I've been with my body my whole life. I know that it's nothing. And I told him, you know, if you want me to waste the cocaine and go to the doctor, fine. And when I went to the doctor, they were kind of like on the same page. Like they weren't too concerned, but something told me to maybe just ask for a mammogram.
because I had never had a cyst kind of just linger for that long. And then I was thinking maybe it was ingrown hair or maybe something infected, but never in a million years did I think it could be breast cancer. So fast forward to getting the mammogram. Now I'll remind you, I was only 34 at the time. So this was my first mammogram. And once they,
did the original mammogram, then they said they had to do a 3D mammogram because I had dense breast tissue, which was my first time ever even hearing those words. And I didn't understand what that meant. But I just went along with the flow. And so they did a 3D mammogram. And then after that, they're like, OK, we need to take you in the back and do an ultrasound. Once again, it's not clicking in my head that
this may or may not be normal because I've never had to go through this before. But it did make me kind of nervous because I'm like, well, that wasn't on my script to do an ultrasound, you know, I'm well versed in that type of stuff. And I'm like, can they do that? Or am I going to get charged for that? Because, you know, that's not what the doctor ordered. But so I went in the back, they did the ultrasound and it started.
getting kind of like a little uneasy when they said, okay, the doctor will be in to talk to you. Because in my mind, I'm like, what doctor? Who's doctor? My doctor is in here. You know, like, so I was, I was really confused. And, you know, I had gone there for other testing and no doctor has ever come to talk to me about anything any other time. So, you know, I, I started to get a little nervous, but then I was like, well, maybe this is their protocol. I don't know. And
Everything Cancer (06:40)
Right, right.
Kiki Wooten (07:00)
Once the doctor came in, he greeted me and he started looking at the images and he just told me right then and there, he's like, you know, I'm about 99 % positive. This is some form of malignancy. Now I'm like, I know what that means. He probably said a ton of other things, but that's all that I heard in that moment. I, everything really just came to like a stop. And it's something that you kind of see in movies sometimes where
There's a lot going on in the background, but the person is just so focused on, you know, what's happening that they can't even focus or hear things around. Like that's where I was. I was in the matrix.
Everything Cancer (07:42)
Right, right.
Kiki Wooten (07:46)
And then I'm thinking to myself, like, how could this be? only 34. You know, what do I tell my family? Do I tell my family right now? And then I had to think, man, I'm by myself. I now have to drive home with this information. And that was hard, you know, they said that, you know, I needed to have a biopsy for them to.
Everything Cancer (08:03)
Yeah.
Kiki Wooten (08:13)
determine exactly what type and the grade and things like that. And it was just, it was horrible. It was horrible because I had no support with me. And then I, you know, as I'm driving home, I literally almost got into a car accident because I couldn't think straight. I didn't know really what to do. My husband was home by the time I got home.
Everything Cancer (08:27)
right.
Kiki Wooten (08:43)
And I'm taking off my stuff. was like, Hey, you want to watch a movie? I'm like, yeah, sure. And then I, just blurted it out. I'm like, they think I have breast cancer. And he's like, looking at me like, what are you talking about? And I just started crying because I couldn't form any other words. And then my husband's crying and I'm like, okay, in a minute, I need you to kind of get it together because I'm going to need someone to kind of hold me and help me figure this out. So,
That was, it was really scary. It was really scary. Just not knowing and then the anxiety of everything on what do I do now?
Everything Cancer (09:19)
It had to be.
Right. I'm amazed at, and I'm not amazed, knowing what I've heard from other people at how clearly you remember each moment of that day, how clear it is in your memory. And do you think, Kiana, that had someone told you after the 3D image, we found something that doesn't look right?
and we want to make sure you get the right care. So we're going to take you back for an ultrasound and then our doctor will talk to you. Do you think, because they're not giving you a diagnosis then, because that's the fear, they can't diagnose because they're not doctors, right? So that's, do you think something like that would have helped ease some of the fear or do you think it would have increased the fear?
Kiki Wooten (10:17)
For me personally, and I know everyone is different, I would have liked to have had those little baby steps. Not me just thinking that, know, okay, this is routine. I kind of went in there blindsided, not thinking that this was the news that they were going to tell me. So I felt like if I were a little bit more prepared, like, you know, we don't see, you know, or we do see something that's kind of concerning. We just want to double check and make sure.
I think that that would have made me feel a lot better. Of course, I still would have been anxious and nervous, but it wouldn't have been like, like I was just, like I said, just thrown into the matrix. And they said it, like it was absolutely nothing. Like I understand that they deliver this type of news every day, but it was so informal and nonchalant.
Everything Cancer (10:59)
Right, right.
Kiki Wooten (11:15)
Okay, so we're gonna send you to get our biopsy and you know, and I was just like, wait, what? I, yeah.
Everything Cancer (11:15)
Right?
What? And suddenly life as you know it is changing in one sentence, we're sending you for a biopsy. And you're right. What does that mean? What does that mean? We're sending you for a biopsy. And then what are my steps after that? my gosh. my, the uncertainty behind you. I wish you had had a breast care navigator with you at that moment. It breaks my heart that you didn't.
Kiki Wooten (11:36)
guys.
Right.
Right.
Everything Cancer (11:50)
my gosh, Kiana. Okay, so take us through your journey. I'm sorry for interrupting you, but my gosh.
Kiki Wooten (11:54)
That's okay. So, the biopsy was about two weeks later and I was just, I was so anxious. I was nervous. I couldn't even really eat during that time just because like my nerves, you know, that waiting period is really terrible. And I found out officially October 1st, 2019.
Everything Cancer (12:14)
Mm -hmm, yeah.
Kiki Wooten (12:22)
when the radiologist called me to inform me that I did in fact have breast cancer. It was called invasive ductal carcinoma stage two. And I just said, okay, and you know, like what do I do now? And then from there, that's where everything just went so fast. I'm like, okay, you're gonna go here. We're gonna set you up with.
You know, you got your medical oncologist, you're to have your surgical oncologist. We're going to set you up with a plastic surgeon. And let me step back. They did know that my sister, my older sister, also was battling breast cancer at that time, a different type. So, you know, we needed to do genetic testing to make sure that there wasn't a genetic mutation. And if there was, where it came from.
So my sister got tested, I got tested, my mom got tested. They were both fine, but I did have a mutated gene in my ATM RNA. It didn't even show up in my regular DNA. So that kicked in a lot more fear because I have a child and we all know children share 50 % of your DNA, 50 % of your spouse's DNA. So,
automatically, I'm like, my gosh, my daughter. And to know that she can't get tested yet is another thing that kind of like, it's very stressful. But getting back to the journey. So I met with the doctors and it was basically like, okay, we're going to do this, this and this. So the first step was the genetic testing. I did that, got that out the way. Second step.
You're gonna have surgery. Now, what surgery would you like? And I'm like, okay, well, if I have this gene, I should probably get them both taken off. Okay, fine. They didn't argue with me about that. That's the one thing that I knew I wanted from day one. But then it was just like, okay, so after that was a job with plastic surgeon and...
once we do the, once they send the tumor for testing, that will determine whether you'll have to have chemotherapy, radiation, a combination or something totally different. So it was like so much crammed in, in a very small amount of time. Whereas it was almost like they were telling me this was going to be my treatment plan. Not really incorporating or asking me
you know, or even saying, you know, these are the treatment options. It was more of like, this is what's going to happen type of thing. So I got the bilateral mastectomy and they put in what are called tissue expanders to get my chest ready for implants. Now, when I first met the plastic surgeon, he's very nice, great guy.
But the one thing that stood out to me that he said to me, which maybe doctors have to be careful about saying, you're a young woman, you're married, after this you still want to look like a young woman, right? So I think it's best that if we do like a small big cup, so it was almost like that was the narrative. And that was my only option as far as
that goes, or I could do something like a deep flap where they take, you know, part of your stomach and the back of your thighs to create breasts, or they can do fat grafting where they would do liposuction in your stomach and then form the breast. So either way, I felt like I was gonna get mutilated. And I was like, well, the implants sound like the lesser of the evils. And I found out that it wasn't.
about a month and a half of having the tissue expanders, I started not to feel good. I just had like a very low grade fever, maybe 100. So I called the oncologist and they were like, okay, well, you you have to come down to the hospital and we'll have one of the doctors waiting for you. I did that. Before I left, I told my daughter who was six at the time, I'll be back in a few hours.
I'm just going to the hospital to get checked. And I learned not to ever tell her things like that because I did not see her for two weeks. And that was right. Yes, that was right at the beginning of COVID and I couldn't have visitors. And it turns out that I had sepsis and I had no other indications. Like I wasn't deathly sick.
Everything Cancer (17:24)
my gosh. Yeah.
Kiki Wooten (17:40)
It was just a slight fever. That was all. That was the only symptom that I had.
Everything Cancer (17:44)
and you didn't feel quite right.
Kiki Wooten (17:46)
Yes, and that I didn't feel quite right. But you know, that could be chemo that can make you feel that way. You know, but you know, they had to make sure and not being able to see my daughter or my family for two weeks. During the beginning of COVID, they don't really know much about COVID. I'm in the hospital, I can't have any visitors. thought for sure that I was going to die in that hospital and that I would never see my family again. That was
Everything Cancer (17:49)
Right.
Kiki Wooten (18:13)
my mindset. But I made it through and when I came home, my daughter was so distant from me. She didn't want to hug me. And you know, it really made me sad. And I was like, you know, are you upset with mommy? And these were her exact words. I'll never forget this day. And she's like, mommy, you lied to me. And that's something that you said we don't ever do. We don't lie.
And in my head, I'm thinking, I'm like, what is she talking about? And she's like, you said that you will be right back in a few hours and I have not seen you. And what else could I do? You know, my six year old, doesn't understand that that was not my intention. And I said that, you know, innocently, because I didn't know that that's what was happening with my body. But in her mind, that's what I said. So that's what she's going to hold me to.
And it took us a long time for us to kind of build that relationship back because of this one innocent phrase that I said that I'll be right back, not knowing that I wasn't going to see her for another two weeks. And that was hard.
From that, once my sepsis cleared up, I had another emergency surgery. So they took the tissue expanders out, put in the implants. Okay, here we go. About two months later after having the implants, I started feeling sick again.
Everything Cancer (19:44)
no, my gosh, and your daughter, mean, I didn't want to interrupt you while you were talking about her, We don't think about the little sentences the things that we say or do that our children end up grasping onto
Kiki Wooten (19:48)
Yeah.
Everything Cancer (20:04)
It doesn't even occur to us. Like it didn't even occur to you that your daughter thought you had lied to her. You honestly thought you would be back. it, and then, you have COVID where I don't think any of us expected the communication to just shut down between hospitals and families, which it did. It was, it was a very unprecedented time. So that only added
Kiki Wooten (20:11)
Yes.
Yeah, I did.
Yes.
Yes.
Everything Cancer (20:32)
really complex layers to what you were going through. my gosh, your poor daughter. She felt so betrayed. meanwhile, yeah. And meanwhile, it didn't even occur to you that she felt betrayed by you saying, I'll be back later tonight. And you had a two week hospital stay being shut away from your family on your mind and
Kiki Wooten (20:37)
Yeah, she did.
Everything Cancer (20:56)
you were basically fighting for your life Okay, so now we're at sepsis number two, the sequel. Yeah, the sequel.
Kiki Wooten (20:58)
Yes.
Yes, the sequel. So I have these implants and one day I went to, at that time I was going to a massage therapist and she went to kind of like touch my chest area and she was like, you feel really warm. She's like, are you feeling okay? And I'm like, you know, I don't feel quite right, but I didn't feel like I had a fever. And she was like, feel this. She was like, you're.
your chest feels really warm, whereas this side didn't feel warm. She was like, I can't work on you. She was like, I want you to go to the emergency room. She's like, it may not be anything. She was like, but you know, I don't, whatever's going on. She's like, if I start to massage there, I don't want to aggravate whatever may be potentially yes, potentially happening. Yes.
Everything Cancer (21:36)
Wow.
Thankfully, right, I'm so glad she noticed that difference and was very mindful of it and said something to you. my gosh, wow.
Kiki Wooten (22:02)
Yes. We had been working together for a few months at that point. So she really knew my body, you know, and then trying to like soften the look of the implants because they just looked like this hard mass. So I was getting, you know, lymphatic massages from her and you know, that that day and she was just like, soon as she put her hand on me, she was like, something's not right. She was like, so please, she's like, will make me feel better if you just go to the emergency room.
and then we can pick up on our session maybe next week. So I'm like, okay, call my doctor. I'm like, well, you know, my chest feels a little bit warm. So of course I have to go back down to the hospital. I call my daughter and then I tell her, you know, I'm going to the hospital. I will see you when I get home. So this time I didn't put a timeframe on it.
Blood work after a day, I'm like, okay, you're not saying anything. I'm going to be, you know, released. As soon as I think I'm about to be released, the doctors came in and they're like, started to grow. So you'll be staying here. We're going to have to take the implants out. I'm like, are you kidding me? So yeah, was. Sepsis again.
Everything Cancer (23:13)
So Kiana, when you say started to grow for our audience, what Kiana means is that the blood cultures they took started to grow bacteria and showed that you had bacteria in your blood, which is sepsis, right? my. So you had to stay.
Kiki Wooten (23:20)
Yes. Yes.
Yes, correct. Had to say, got to clear it up. And then plastic surgeons again, here they are. They're like, okay, well, here we go. Here's the options that we have for you. We can do a different brand of implants because these implants obviously had to come out. Or we can go back to what we said before. We can either do like a D flap.
We can do fat grafting. like, I don't want to do any of those things. I already feel tortured and mutilated. This is now my second emergency surgery because of this. What are the other options besides those things? And it wasn't until then that they told me, you could stay flat. And it was like a bell went off in my head, like, you know,
your body does not like anything foreign in it. That's what I want to do. And it was like, are you sure? Yes, that's what I want to do. I didn't even talk it over with my husband at that point. That was the decision I made because I felt like if he loved me truly, it wouldn't even matter to him. And it didn't. But I was like,
where was this option in the beginning of us talking about reconstruction versus non reconstruction? Like that conversation never even happened. And that should be one of the options to be aesthetically flat. And there's nothing wrong with that. And, you know, it was almost like, well, you know, you're still a young woman and I'm like,
regardless of whether I have breasts or no breasts, I'm still gonna be a beautiful young woman. And I really feel like the narrative around that really needs to change.
Everything Cancer (25:11)
Great.
Yes, and maybe I think it is, but it didn't, it shouldn't have happened that way then. And the other part of the conversation that needs to be made very clear are, and I'm sure it is when you're signing your consent, but while you're sitting in that chair, having the discussion about this is the risks that you experienced are very real risks of sepsis.
that can be life changing. Right, mean, people that experience sepsis, it is a life -threatening condition that can have long -reaching ramifications if it's not caught early. And luckily, because you had someone very mindful the second time who felt the warmth, it was caught early. And then the first time you called and said, I just don't feel right.
Oftentimes I say to people, if you feel fluish, if you feel achy, someone who's under treatment or has had surgery, call your doctor because for whatever reason there's a fixation on the fever and we don't always run fevers when we're septic, but we don't feel right. And so erring on the side of caution, I have seen
Kiki Wooten (26:27)
Right. Right.
Everything Cancer (26:33)
save lives because it's caught early. And I really wish that conversation was emphasized with people that are at risk for sepsis, people that are after surgery or are immune suppressed
but back to what you're going through. So what was your husband's reaction to your decision?
Kiki Wooten (26:53)
He actually was so supportive. And then, you know, after I told him, he actually said to me, he was like, I kind of wish you had have done that to begin with, but you know, he was like, you know, it was your decision. He was like, that way you wouldn't have had to put your body through so much trauma. mean, having essentially three surgeries back to back, all less than a year, you know, and then we didn't even talk about.
the eight times that I had seromas. So now I have drains on my sides because of fluid buildup. it was a lot and thinking back on it now, I'm like, wow, I probably had BII that whole time, know, breast implant illness, which a lot of doctors really don't believe in.
Everything Cancer (27:30)
Right.
Kiki Wooten (27:45)
But you know, I'm like, well, with all the fluid buildup that I kept having while I had the tissue expanders and the implants, the signs were all there that my body was rejecting this. And...
I don't know what it is where society feels like you need to meet a certain criteria or you have to look a certain way in order to be accepted. And I feel like that's a fear for a lot of women, especially younger women that may have breast cancer. They do this out of fear of wanting to still have breasts. That honestly,
Everything Cancer (28:30)
Right.
Kiki Wooten (28:32)
I mean, unless you have kids and you're breastfeeding, start really no purpose to me. But it's, it's a conversation that doesn't happen and it really does need to happen. I tell my daughter all the time, I mean, she looks at my scars. I don't shy away from them with her and you know,
Everything Cancer (28:40)
Right.
Kiki Wooten (28:58)
she touches them and she's like mommy and she'll like touch my chin she's like you're still beautiful it's okay and i'm like yes i am and that's what the world needs to see
Everything Cancer (29:09)
So yes it is and you make sure the world sees it. So tell us, tell us about that Kiana because you, you are loud and proud being flat chested.
Kiki Wooten (29:21)
Yes, I can honestly say before breast cancer, I wouldn't even take my shirt off at the beach or at the pool. I always had a cover up on because I felt so self -conscious even back then. But now I can say, and it sounds weird when I say this, like cancer has given me a confidence that I have never had before. And
You know, when I'm out doing photo shoots or I'm at these speaking events, I'll wear something low cut so you'll see. You can see my little scars. You can see my tattoos. But guess what? I'm here. I'm fierce. I'm here to fight for you. I'm here to, you know, just show the world that it didn't change me being this beautiful being. As a matter of fact, it probably boosted that a little bit.
As far as, like I said, my confidence level, doing modeling, which I never thought I would do, you know, that was never my thing. I'm actually more of a tomboy,
wow, yes, this is where it's at. You know, showing people that you can conquer the world and be breastless too. I'm a superhero to my child. You know, and she tells me that all the time. She's like, mommy, you're a superhero. Yes, I wear a cape with an "S" on my chest. Proudly.
Everything Cancer (30:48)
You're a superhero to me. And I hope that your story is inspiring to women who are facing this decision or will be facing this decision and to have an honest conversation with their doctors, shared decision -making with their doctors, where the real, rubber hits the road conversation about what does it really mean to have reconstructive surgery? It's not just about the cosmetic piece of it.
Kiki Wooten (30:50)
thank you.
Everything Cancer (31:16)
What does it really feel like? What are truly the risks of it? Yes, it's discussed in the consent, but what does it really mean to me over the next six months? How am I gonna feel? And how are they going to feel? Am I going to have sensation in them or is it cosmetic? And also understanding to some women that is very important to have that. That is part of their identity and I'm very glad
from that perspective that this is now supported. A long time ago, there wasn't that choice, but now women can feel free to have that choice and they need to feel free. Like the narrative, as you were saying, needs to be there. The narrative of what does this really mean? What am I entering as far as what is this surgery going to mean to me?
over the next six months, what is it going to mean to my family? What are the true risks? And am I going to have breasts with feeling back in them or is it cosmetic? How does that work? And so I do believe those conversations are happening, but they need to really be in depth because this is a hard surgery to go through. As you know, it's hard. Reconstruction is not easy.
Kiki Wooten (32:39)
Yes. Yes.
Everything Cancer (32:45)
And, but also involving, if you have an intimate partner, involving your intimate partner in that decision process too, I think if you want to, may be important to women. But it's a personal choice, absolutely a personal choice. And then also trans people who have developed breasts, that is something that was hard won for them. And then suddenly to face the prospect.
Kiki Wooten (33:02)
Yes.
Everything Cancer (33:15)
of losing them is heartbreaking as well. So there's a lot of layers to those decisions. I'm so glad your husband's supportive and he finds you beautiful and that you're modeling. I'll have links to some of Kiana's events in the show notes. So if you could send those to me in email, Kiana, that would be phenomenal. Yes.
Kiki Wooten (33:20)
Right.
Right.
Yes.
Absolutely.
Everything Cancer (33:38)
and a link to your book, has you with your big, beautiful pink hat on, which isn't your hat, but it is in all of our minds. A link to your book as well. That would be great. You mentioned to me that breast cancer saved you.
Kiki Wooten (33:42)
No.
you
Yes.
Yes.
Everything Cancer (34:03)
So tell us how that happened.
Kiki Wooten (34:07)
right. So before breast cancer, I would say I was a very complex person. And if you loved me, you really had to really love me. I was very standoffish and a lot of things that kind of shaped the way that I thought and how I treated people stemmed from
past childhood trauma, which I felt like I was always in the fight or flight mode since a young child. And as a young child, I learned through
different events that happened to me, I'll just put it that way, that the world was not a safe place and that people that you trust aren't always there to keep you safe.
So that was always my mindset of like, know, whenever there was someone interested in me and I'm like, you're just going to hurt me. So I don't want to deal with you. And I had this very hard exterior where in actuality, it was just me crying out for help. And I didn't know how to navigate those feelings. So.
The only way that I knew how, which is, what a lot of other people do is they turn to drugs or alcohol or whatever their addiction may be at that time. And I was very functional doing a lot of these drugs. I was in college. I still made the presidents and the deans list. I graduated with honors and
because I was away from my family, no one knew what I was going through. And my boyfriend at the time, who happens to be my husband now, he gave me an ultimatum. He was like, I can't watch you do this to yourself anymore. And we broke up. And once I moved back home and my mom physically saw me, it was like a, my God.
what happened to my daughter, what is happening to you, what has happened to you and...
when my ex kind of came back into the picture and we just started talking a little bit. That breakup needed to happen and for a long time, even after I got cancer, I blamed myself. I blamed myself, number one, my brother, which a lot of people
know, passed away. He was murdered. The last time that I saw him, we actually got into our argument. Two days later, he was murdered and we never got to resolve any of our issues or the problems that we had. Because in your mind, you always think that there's time and time waits for no one. So when I found out that I had cancer, I was
like, wow, this is my karma. You know, that's where my mind went. Like, this is my karma for, not that I was a bad person, but you know, I didn't treat people with the utmost respect or I was very judgmental
Having breast cancer gave me a lot of internal reflection and I really, really had to dig really deep down inside myself to say, you know, maybe this is the change that you need to become more empathetic and understanding of people's situations and that, you know, just because you're going through different things,
you shouldn't be judged on it because we all go through things. We've all done things that we're not proud of. So it really changed the way that I viewed the world, how I viewed myself, even though there are times when I think about my brother and I think about him very often that I still do struggle with, you know, our last conversation.
and how I wish that I can go back, but I can't. And it just made me just navigate the world a little bit differently. And even how I treat myself, you know, cause I am my own worst enemy. I will pick apart things that I did or didn't do, or I should have done this, or I could have done this, or I could do this better. I am my own worst enemy. And I had to learn to stop that.
So it has really helped me be a lot more positive in my life and in other people's lives. And to kind of break down that wall that I had, I mean, I still have some of my fears naturally, but it's easier now for me to let people win. I mean, I've gone on retreats with women I didn't know. And I tell you what, we talk almost every day now. So, you know, I,
wasn't that person before. I would never have gone anywhere with strangers. Spending a night with strangers, that would have been so scary for me. But it has really opened up my eyes to a lot. And I'm happy in a sense, like I'm sad that I had to go through all of that in order to recognize these things in myself. But it was necessary, it needed to happen. Something had to happen as
in intervention for me.
Everything Cancer (39:35)
The shared experience, first of all, is invaluable. When you're with other people, you're a survivor and you're with other people that are survivors because they get it and you're not vulnerable with them. They've all been and you don't have to explain anything. They've been in the same boat or you have to explain very little. But the fact that you went from,
what you called a hard person or you a hard exterior to opening yourself up to other people. That'd be a really tough step for you to go on retreats, to talk with other people. mean, to make that step because a lot of people still would hang back.
Kiki Wooten (40:11)
Yes.
Everything Cancer (40:18)
The Kiana I'm talking with and have spoken with is probably one of the most gracious, warm, wise people I've ever met.
Kiki Wooten (40:28)
Yeah, it was really like a 360 change. Like I have done so much, you know, meditation, counseling, anything that I felt like I needed to do to become the version of myself that I felt like I needed that I didn't have. That's what I want people to see.
Everything Cancer (40:51)
You've accomplished it with flying colors. And I love how vibrant of a person you are now and engaging with being around other women and engaging in showing that you are beautiful as you are and being in what you describe to me as a very rich and collaborative marriage with your husband.
and full love, mutual respect. It's a beautiful thing. I sent you this question, and I'm sure it's a hard question to answer, but how do you think being Black has impacted your journey from maybe additional barriers and maybe
additional support from the people around you.
Kiki Wooten (41:40)
definitely think, and I hate to think this way, but I definitely think it played a factor in some of the earlier treatments that I received. there was this one time where I was, I didn't know what I was experiencing. I noticed that my arms and my hands were very tingly and numb and you know,
Everything Cancer (41:50)
Mm
Kiki Wooten (42:08)
My doctor at that time said to me, well, if you were experiencing that, it would have happened within this amount of time and not this amount of time. You're way past that. And it was almost like to me, you're calling me a liar. That's basically what you're saying to me.
Everything Cancer (42:24)
Right. I mean, you're you're feeling it. You he's denying that you're feeling what you're feeling, what you're reporting. Yeah.
Kiki Wooten (42:30)
Right. I'm like, you know, so it was more of like, well, if you're feeling that, then you need to see a neurologist. So I had to find my own neurologist. And then they sent the referral over so that they did what's called an EEG and a skin nerve biopsy test. And they both showed that
I had, neuropathy, which I didn't know about. So that wasn't anything that was explained to me like, hey, you know, this may happen. So if you start to experience that, you need to let us know And it was like, I had to go through hoops just to prove something that I was already saying to you.
Everything Cancer (42:57)
Right. Right.
Kiki Wooten (43:15)
And I feel like this happens a lot. I'm in a lot of different, you know, breast cancer groups, a lot of them being for women of color. And a lot of them say the same things. Like they tell their doctors that they're experiencing things and it's almost like they're being dismissed. And this is why we have issues as to why we don't say things because there's that fear of not being believed or that it's nothing.
Everything Cancer (43:39)
Right, which is really hurtful and insulting. Yeah, so you fear bringing it up because you fear you're gonna get knocked down and then it makes you not want to go back.
Kiki Wooten (43:44)
Yes.
Correct.
Everything Cancer (43:54)
Right. Wow. And meanwhile, what you're experiencing is peripheral neuropathy and you must have had a taxane based chemotherapy from what I'm guessing from what you're describing. Okay. And that is something that absolutely should have been, you should have been informed of and also through each treatment, someone should have asked you, are you experiencing any numbness or tingling?
Kiki Wooten (44:05)
Yes.
Everything Cancer (44:19)
Wow. And then when you say something to your doctor who knows you're receiving taxane- based therapy and if your doctor's listening, I'm really sorry. I don't mean to sound like I'm pounding on you. I apologize, but they're disbelieving you. mean, who knows? Everybody's body is different. Who knows when they're actually going to start experiencing that? But my gosh, Kiana. But then when you go to groups and you're talking about it,
Kiki Wooten (44:35)
Right.
Yeah.
Everything Cancer (44:46)
and what your experience is being validated. So, on behalf of chemotherapy and fusion nurses everywhere, I'm really sorry that happened to you because that's part of a toxicity assessment.
Kiki Wooten (45:00)
Thank you.
I just kind of, let it linger for a little bit because I'm like, I don't know what's going on here, you know? And luckily I did because now I'm on, you know, medication to try to help with those symptoms. I still have the breakthrough pain and the sensations, but it's not as bad. But, you know, like you said, just, just having that talk, just saying, Hey, you know,
Everything Cancer (45:23)
Mm
Kiki Wooten (45:28)
this is a side effect that may happen. So if you do start to experience this, need to let us know and not making me feel like if I have a concern, I can't come to my doctor about it. That doesn't work very well.
Everything Cancer (45:44)
Right. I'm really sorry that the conversation with your doctor went that way.
That's one of the reasons why self -advocacy is so important, really understanding and shared decision -making and empowerment to avoid
the conversations you've been having and you're having in your circle of women, you need to feel empowered. So if you have someone who knocks you down like that, then you go to the next person. it's your life, your symptoms, your quality of life, your ability to enjoy your quality of life that are being affected by that.
And so you need to feel empowered to then have a conversation with another person as opposed to just, can't, I just, can't ask questions anymore.
Kiki Wooten (46:30)
Absolutely.
it happens so often that people don't realize it. I mean, we just had a discussion the other day and there are women that feel like, like you said, they just don't ask the questions because they feel like they're going to get shut down. And I'm like, you know, do you know that the doctor works for you? You can fire them.
Everything Cancer (46:36)
Yes.
Kiki Wooten (46:56)
That's what I do. And I go to the next one. If I feel like I'm not getting what I need. And it could be something so simple, but having cancer is scary. And then the thought of reoccurrence, pain can just be, a symptom. I'm like, well, everyone has a little bit of pain, but is this pain I'm experiencing now something for me to worry about? So yes, it sometimes it seems like we're being,
hyperchondriacs as I've been told. But you've also never been in this realm. So while that may be what it looks like to you, that's not what it's like for us. It's a scary place to be
Everything Cancer (47:35)
And so you're saying I need help because I'm having pain every day. And I don't want this to sound like we're beating up oncologists. Oncologists have trained hard to be where they're at.
Kiki Wooten (47:46)
Yes.
Everything Cancer (47:45)
So everybody listening, write your questions down before you see your oncologist because you have a short visit and that uses your time with them to advocate for yourself better. And they're dedicated to what they do. empower yourself to write your question down, write your symptoms down, write what days it occurs on, write how it feels, write when it's worse, when it's better and what makes it feel better, what makes it feel worse.
Kiki Wooten (47:58)
Yes.
Everything Cancer (48:16)
So who can I go talk to to make this better? Or I'm going to go and talk to the practice manager and see if there's someone else in this office that I can talk with such as a
physician's assistant or someone or get a referral to someone. But please help me.
Or if you're having symptoms and you don't feel like you can bring them up and it's really hard to do.
Bring someone with you who will ask the questions for you because they don't have the same stakes in the conversation that you do
Your journey while it's been a painful one from the time you were a little girl and the interaction you've had with your brother and the regrets you've had.
The person you are now, the vibrant, giving, loving, warm, I'm going to start crying, warm person that you are now who can give so much love. You're amazing, Kiana.
Kiki Wooten (49:06)
I'm too.
Thank you. Thank you.
Everything Cancer (49:15)
anything else you'd like to share?
Kiki Wooten (49:17)
really just like you said before, it's really important to be your own advocate. If something doesn't feel right to you, it's okay. It's okay for you to go in a totally different direction that a lot of people may not understand. It's not for them to understand. It's not their journey. You, you are the key to your happiness. You.
dictate how you want your journey to be, what you want, what you don't want.
Man, it's a journey. It's not for the weak, but you can do it. I want people to know that you can do it.
Everything Cancer (49:59)
And you
and you can find beauty along the way.
Kiki Wooten (50:04)
Absolutely.
Everything Cancer (50:06)
and friends along the way. And yes, look at you. Look at that smile. If people are listening, that smile on your face, you say you talk with, you talk with those people you went on a retreat with every day now.
Kiki Wooten (50:10)
Yes. Okay.
Yeah
Yes. Yes. I mean, and they're from all over. There's a lady in Sweden that I talked to who she's like, you know, come visit me, you know, I'll take you and we can go to Paris. It's only like a three hour train ride, you know, so it's like really like a sisterhood of people. California. I can't even think of all the places that these women came from, but we came together as one for
the same purpose, to educate, show visibility, to show that we're flat, but you know what, we're still beautiful and we can conquer the world. And I wouldn't change it for anything in the world. I mean, I couldn't imagine my life without them in it, honestly.
Everything Cancer (51:09)
I can't wait till we talk again. hope we get to meet in person soon.
Kiki Wooten (51:13)
Yes, that would be great.
Everything Cancer (51:16)
Thank you for your time today, Kiana. It was really amazing to have you here.
Kiki Wooten (51:20)
Thank you so much, Jill.
The Breast Decision a book by Kiana Wooten https://www.amazon.com/Breast-Decision-Kiana-Wooten/dp/B0B6S4SWTD
Email KiKi, Kiana at thebreastdecisionfoundation@gmail.com
Kiki’s LinkedIn linkedin.com/in/kiana-wooten-4700a12a4
Tiger Lily Foundation https://tigerlilyfoundation.org/
A national women’s health and oncology organization providing education, awareness, advocacy and hands-on support to young women (15-50) before, during and after cancer.