00;00;00;17 - 00;00;06;19 Dr. Winn I'm Dr. Rob Winn and you're listening to Real Cancer Talk from VCU Massey Comprehensive Cancer Center. 00;00;07;10 - 00;00;23;25 Clovia Lawrence I am Miss Community Clovia, welcome to Community Conversations, the Black Health Wins podcast. You want to join us all the way up. My special guest is joining me on the show is Kayla Nixon. She is founder of the Uterine Collaborative and Bloom RVA. 00;00;23;27 - 00;00;25;27 Clovia Lawrence Kayla Nixon, how are you? 00;00;26;04 - 00;00;28;23 Kayla Nixon I'm good. It's good to be here. 00;00;28;25 - 00;00;41;01 Clovia Lawrence All right, Kayla, you got a story to tell when we're talking about the uterus, fibroids, endometriosis and more. And it's nothing for you to fret about, listeners. You want to turn it up because she has some good information. 00;00;41;06 - 00;01;09;14 Kayla Nixon The Uterine Care Collaborative is an online digital platform and a community hub specifically made for black women to learn about these conditions. And research, we're finding that black women are more affected, more aggressively affected, more often affected by these conditions. But there aren't a lot of resources and information that is out there specifically for us and in language that we can understand. 00;01;09;17 - 00;01;34;26 Kayla Nixon So I wanted to create a platform where people could find all of this information. Questions to ask your provider, diet plans to follow, how to change your lifestyle, exercise, that sort of thing. These practical applications that we could put into practice, beforehand, preventatively or even once we've received a diagnosis. So that's where this platform came from. 00;01;34;26 - 00;01;48;01 Kayla Nixon And a lot of it came from my personal experience. And then the research that has just come across my desk in the past few years, and I'm really excited to see us grow and be able to add more and more information and resources to our platform. 00;01;48;04 - 00;01;58;07 Clovia Lawrence Uterine cancer survivors since 2019. You go in and get your regular checkups once a year, and then you're diagnosed with uterine cancer? 00;01;58;09 - 00;02;24;24 Kayla Nixon Well, I had gone for my regular checkup. I want to say it was around September or October. And I wasn't experiencing really any symptoms at that point. But then later on in the year, in December, I was experiencing these severe symptoms pretty much out of nowhere. I had this abnormal bloating for a long time. Abnormal bleeding for a long time. 00;02;24;24 - 00;02;43;06 Kayla Nixon And I figured that that was something that was worth getting checked out. So I went in for another appointment. And the first doctor that I saw would not do any tests. My appointment was maybe five minutes. I blamed everything I was experiencing and the concerns that I had, and he was like, oh no, I think you're fine. 00;02;43;08 - 00;03;03;12 Kayla Nixon But then into January, I was still experiencing those same symptoms. And so I was like, well, I feel like I should get a second opinion. So I went to a different provider. And that provider was willing to do every single test, to figure out what was going on. And so we did, a pelvic exam. 00;03;03;12 - 00;03;27;01 Kayla Nixon We did an ultrasound, we did bloodwork, we did all of these things. And then finally a DNC procedure. And I found, that procedure was on February 14th on Valentine's Day. And then February 19th, just a couple months after my that initial appointment, I found out that I did, in fact, have stage one uterine cancer. 00;03;27;03 - 00;03;29;04 Clovia Lawrence Thank God they caught it early. 00;03;29;06 - 00;03;50;28 Kayla Nixon Yes, ma'am. That is the biggest thing. Specifically with uterine cancer, because there's no screening for it. So it largely depends on people recognizing the symptoms and seeking help when they can. Which is exactly what I did. So that that early testing is very important. 00;03;51;00 - 00;04;00;10 Clovia Lawrence So for women who may not have a cycle anymore and it could potentially be uterine cancer, would there still be bleeding or just bloating. 00;04;00;12 - 00;04;30;10 Kayla Nixon There could be a few different things. There could be bleeding. There could be bloating. There could be changes in your, and how you use the bathroom. The frequency, how often you have to use the bathroom. That's also a sign, because I do want to make it a point to say that this specific cancer uterine cancer, is often diagnosed, at menopause age, which is why it was so strange and rare for me to be experiencing this at 24. 00;04;30;12 - 00;04;59;05 Kayla Nixon But I do want to note that the age has decreased. So younger women are being diagnosed with the disease, more frequently at this point. But yes, the main symptom is abnormal bleeding. So even if you are not experiencing periods anymore, that would be, a pretty significant sign. But then, like I said, bloating changes and in bathroom behavior, all of those sorts of things can be signs that something abnormal is going on. 00;04;59;07 - 00;05;22;16 Clovia Lawrence Kayla, thank you so much for sharing your story with us and even more, the Uterine Care Collaborative. You started it in 2014 to educate black women on uterine health conditions, improve access to resources, and amplify the voices of women affected by fibroids. I discovered I had a fibroid tumor when I was pregnant with my daughter. I didn't know anything about it, and that was years ago. 00;05;22;17 - 00;05;39;25 Clovia Lawrence Yeah, but I let it shrink on me. I mean, that's a whole nother story. Kayla. But anyway, just to have this uterine care collective, you decided to not be silent and to help others. And I just commend you for this. 00;05;39;27 - 00;06;12;00 Kayla Nixon Thank you so much. I have to say, I it's not something I ever expected for myself. I'm very much a behind the scenes person. I like to, you know, be very productive, get a lot of things done and not necessarily like a forward facing kind of person, but it has been such a blessing in disguise to be able to share, my testimony, because I do feel like a big part of awareness is people being able to talk freely and openly about the things that they've been through, because that empowers other people to do the same. 00;06;12;01 - 00;06;12;24 Kayla Nixon Yeah. 00;06;12;26 - 00;06;37;01 Clovia Lawrence And that's what we need empowerment. And when something doesn't feel right in our body, in particular when it comes to us black women, if you don't feel that you're being helped, do like you did. You seek a second opinion or go to another health care provider. Because people always make our symptoms the same and they're they're different. If you have excessive bloating, there is an issue. 00;06;37;01 - 00;06;40;21 Clovia Lawrence If you haven't been eating or something that bloats you or inflame you. 00;06;40;24 - 00;06;57;27 Kayla Nixon Absolutely. That is the one of the major messages that I have really been trying to push is that you have to ask questions. You have to push back, press your gut. So even if a doctor is saying, this may be the case or this may not be the case, you know what you feel in your own body. 00;06;57;27 - 00;07;17;13 Kayla Nixon You're the expert in your own body. And if I know that something, I'm feeling something today that I wasn't feeling yesterday or I wasn't feeling last week, I deserve to get answers for that. So I want other black women to know that they deserve care. They deserve attention. They deserve treatment just like anyone else. 00;07;17;15 - 00;07;42;04 Clovia Lawrence And we have to help ourselves. A lot of times when it comes to potential diagnosis or any of the diagnosis is when, diagnosis when it comes to cancer. But the, the one thing it remains the same when it comes to preventive diet, exercise, rest and sleep. And these are just some of the things we don't get an opportunity. 00;07;42;04 - 00;07;48;17 Clovia Lawrence And I wouldn't say the majority, I don't have a percentage on it. That's something we don't really do often enough. 00;07;48;19 - 00;08;17;23 Kayla Nixon Right. We I think if there is a very I think being in the black community and in general is a very layered experience, and there are so many factors that play into conversations like this. And I think that to your point, there are a lot of, a lot of things that we experience or things that have been kind of ingrained in us, that we are we have to unlearn. So rest... 00;08;17;23 - 00;08;39;17 Kayla Nixon It's okay to rest. You don't have to work for all the time. Yeah. It's okay to take a break when you need to. It's okay to maybe put down to not have three pieces of fried chicken, but perhaps two. It's okay to drink water. It's okay. You know, all of these things that maybe we're not hearing so often in our community that we should be hearing. 00;08;39;23 - 00;08;58;15 Kayla Nixon Right. And not for, deprivation. We're not saying don't ever do any of these things. We're saying maybe do them in moderation, do them more thoughtfully. And those are the types of things that can add to your point, maybe prevent certain things or at least reduce the risk of certain things happening. So, yeah. 00;08;58;17 - 00;09;07;15 Clovia Lawrence Kayla Nixon is a very special guest on the show. She is the founder of the Uterine Care Collaborative, and you can learn more about that. You have a website Kayla? 00;09;07;17 - 00;09;11;04 Kayla Nixon I do it is uterinecarecollaborative.com. 00;09;11;06 - 00;09;11;19 Clovia Lawrence okay. 00;09;11;19 - 00;09;23;14 Clovia Lawrence You can go to uterinecarecollaborative.com. We're going to take a break and come on back. We have more good news. Stay close. This is Community Conversations the Black Health wellness podcast. 00;09;24;27 - 00;09;55;02 Clovia Lawrence Welcome back to Community Conversations the Black Health Wins podcast. I am Miss Community Clovia with my very special guest, Kayla Nixon. She's been sharing her story with us. It's a powerful one. We're going to get back into that shortly. But she is the founder of the Uterine Care Collaborative. She found it in 2024 to educate black women on uterine health conditions, improve access to resources, amplify the voices of women affected by fibroids, endometriosis and more. 00;09;55;05 - 00;09;57;12 Clovia Lawrence Kayla, welcome back to the show. 00;09;57;15 - 00;09;59;11 Kayla Nixon Thank you so much. I'm glad to be here. 00;09;59;12 - 00;10;06;22 Clovia Lawrence I'm glad you're here. What are the biggest misconceptions you find in advocating for research around women's cancers? 00;10;06;24 - 00;10;31;26 Kayla Nixon I think one of the biggest misconceptions specific to women's cancers is that women and people in general, even know about them in the first place. So I, in the work that I do in my, full time job and in my advocacy, I frequently hear stories that women didn't even know that these cancers existed until they were diagnosed with them, which is incredibly late. 00;10;31;29 - 00;10;54;27 Kayla Nixon So I think that this lack of awareness, awareness is part of the reason that more funding is not going to women's cancer research, because people don't know to prioritize them. People don't know the statistics. They don't know how women are being affected by them. Only about 8% of funding goes to women's health in general. And I just think we have to do better than that as a nation. 00;10;54;29 - 00;11;19;03 Kayla Nixon I think policymakers have to consider that these are their mothers, their daughters, their on their sisters friends who are suffering from these diseases, some of which are completely preventable, like cervical cancer. If it's caught early and either once they're diagnosed with it is something that you don't have to die from. But yet women are still dying from cervical cancer. 00;11;19;06 - 00;11;37;20 Kayla Nixon And so one of the biggest misconceptions in the fight is that is approaching that awareness piece and letting people know these are cancers that do exist and these are cancers that you need to be aware of and that you need to understand the symptoms and risk factors for in order to be able to potentially avoid them. 00;11;37;22 - 00;12;03;17 Clovia Lawrence And that visit to the doctor is so important. I'm a female, but what I understand is yes, we want to be healthy. We all want to be healthy, right, Kayla? Every time we go to the doctor, we want our blood work. We want everything to be good. But in the event from one year to the next, and there are some issues and challenges, whether it comes with you, you know, because everything can really be found in your blood work, right? 00;12;03;19 - 00;12;04;26 Kayla Nixon Right. 00;12;04;26 - 00;12;26;24 Clovia Lawrence You you want to talk to that doctor then. And if they don't say something to you, you say something to them because you're not the only patient. And what I would suggest to women is to form a relationship with your health care provider. Because if you form a relationship with them, they will definitely have a relationship with you. 00;12;26;25 - 00;12;42;24 Clovia Lawrence For example, I went to my doctor, I love her, Doctor Klein, and I said, wow, I'm having this pain in my side. She said, oh no, we're going to schedule you to get it. We're going to check your kidneys. That's straight up. Yeah. She was oh no, we're going to get that checked out. And so we have to understand that. 00;12;42;24 - 00;13;03;12 Clovia Lawrence And going over your blood work with you whenever you go for your next checkup, they want to go over your last blood work. They want to make sure you got, you know, your physical, you get your mammograms and all of the other things. And these are the things that we have to do. But, Kayla, we want to make sure that these doctors, if you will, or general practitioners, make sure they're engaging too. 00;13;03;14 - 00;13;34;01 Kayla Nixon Absolutely. I think that this is a great point that you're making, about their engagement. And then also just, you know, it's forming that relationship with them because I do think they're more likely. And I will say, if it's possible before I go into what I was about to say, if it's possible to make to consistently see the same doctor, because one of the things that we know from research is that an entire third of the country doesn't have a PCP, does not have a primary care physician. 00;13;34;03 - 00;13;53;12 Kayla Nixon And so they're going to urgent care, they're going to the emergency room, they're going to this doctor, going to that doctor. And it's a little bit harder to follow your medical history and a little bit harder to, to be proactive and to jump on things if you've seen six different doctors in a span of a few months. 00;13;53;14 - 00;14;18;11 Kayla Nixon But what I will say in terms of forming a relationship with a provider is I actually was diagnosed with PCOS in, 2017, which is polycystic ovary syndrome. And there are a host of symptoms that come with that. Difficulty losing weight, body hair, so many things that abnormal bleeding, abnormal periods and cycling. 00;14;18;13 - 00;14;41;16 Kayla Nixon So I was diagnosed with that in 2017, and the same doctor who diagnosed me was that is also the doctor who found my cancer. So she was aware of two years and two years of medical history, which is what led her to run that gamut of tests. So I think it's very important you make a very important point about just forming that relationship with your doctor. 00;14;41;16 - 00;15;04;04 Clovia Lawrence It is so important. It is it's really important because your doctor, once you form that relationship and for all of the women who are listening and or the husbands that are listening and you've been trying to get your wife to go to the doctor, once you you form that relationship with that doctor, you talk to that doctor, that doctor is really going to pull for you. 00;15;04;06 - 00;15;21;12 Clovia Lawrence They're going to understand when they look at your bloodwork that they're going to be like, you know what her bloodwork is her. His bloodwork is him. And so once you do that and they will tell you, hey, you got a deficiency, girl. You need we got to get you on this. Vitamin D is low. You've been having aches. 00;15;21;14 - 00;15;51;20 Clovia Lawrence So these are the things that your general practitioner can talk to you about. But as you said, if you go to urgent care and all of those places, they are great and fine in a pickle emergency. But you do need that. General practitioner I am Kayla, I am so glad we're having this conversation today. It's like a cry that we are sending out to all women and even young girls, if they're not feeling good about themselves or something doesn't feel good, you can talk to your pediatrician. 00;15;51;20 - 00;15;54;23 Clovia Lawrence Two if they're under the age of 18 00;15;54;26 - 00;15;55;18 Kayla Nixon For sure. 00;15;55;18 - 00;16;17;29 Kayla Nixon I think that is a great point to make as well. I think part of starting these conversations is having them young. I think so many of us who are older, maybe didn't experience conversations to a certain degree that made us feel comfortable talking about specifically, female parts, talking about our reproductive system, talking about a uterus and these sorts of things. 00;16;18;02 - 00;16;29;16 Kayla Nixon That has to start young so that when something maybe does feel as normal or you just have questions, you do feel comfortable going to a doctor or going to someone to ask those questions. 00;16;29;19 - 00;16;43;22 Clovia Lawrence All right, that's good stuff. And thank you. Thank you. Did I say that already? Thank you again. And thank you again. What gives you Kayla? What gives you hope? And what have current survivors sharing with you? 00;16;43;24 - 00;17;10;10 Kayla Nixon Her survivors recently have been sharing a lot with me about what it looks like on the other side of diagnosis. I would say, like in recent years, because of our greater digital access, TikTok and Instagram and all these things and the transparency that people have now on these apps, I think we've learned more and more about what, for example, pregnancy and childbirth actually looks like. 00;17;10;13 - 00;17;33;03 Kayla Nixon And some people are grateful for the honesty, and others might call their stories horror stories, but I would say the same for cancer survivorship. I think now many survivors feel more comfortable sharing about changes and libido, maybe having lost all their money to cover treatment costs, suffering from depression, or all sorts of other effects of being diagnosed with cancer. 00;17;33;05 - 00;17;59;04 Kayla Nixon And so it gives me hope to see that so many women have been through things like that and did not give up on life, or didn't get that because they were diagnosed with this disease. So I've seen literally seen women who have skydived, women who play tennis and doing all sorts of things during and after treatment. And that's so inspirational to me as a survivor, as an advocate, as a professional. 00;17;59;06 - 00;18;17;15 Kayla Nixon And I think that everyone should be inspired to know that life goes on and we can either give up the fight or we can find joy and strength and especially after a cancer diagnosis, finding out that you have fibroids, endometriosis, whatever the case may be, your life doesn't have to stop there. 00;18;17;17 - 00;18;43;10 Clovia Lawrence Absolutely not. Kayla Nixon is founder of the Uterine Care Collaborative. She founded in 20 she founded in 2024. But if you want more information about it you can go to uterinecarecollaborative.com. That's uterinecarecollaborative.com. Take a break. We got more good news. This is community conversations the Black Health Wins podcast. 00;18;45;01 - 00;18;59;01 Clovia Lawrence Welcome back to Community Conversations. I am Miss Community Clovia. My very special guest is Kayla Nixon and founder of the Uterine Care Collaborative and Bloom RVA. Kayla, welcome back to the show. 00;18;59;03 - 00;19;00;08 Kayla Nixon Thank you so much. 00;19;00;12 - 00;19;24;22 Clovia Lawrence It's been so enlightening for folks who have had a uterine cancer diagnosis, fibroids, endometriosis or any health issues that women have. That's right. We put it out there. We're talking about it. Kayla is not embarrassed about talking about it. I'm not embarrassed about talking about it. So share with that listeners. You were diagnosed with uterine cancer in 2019. 00;19;24;25 - 00;19;53;22 Kayla Nixon I was I was diagnosed with uterine cancer at the age of 24 in 2019, and luckily I was diagnosed at stage one. So it was not very advanced. And it was I was able to be treated, in a reasonable amount of time and go on with my life from there. So I would like to emphasize that that early detection piece is so important, and part of early detection is really familiarizing yourself with the symptoms of these conditions. 00;19;54;00 - 00;20;18;17 Kayla Nixon Learning maybe what it looks like for someone to be diagnosed with uterine cancer fibroids. And there could be a number of symptoms, but I would throw out there abnormal bleeding, bloating, changes in your bathroom habits, things like that. That anything that you experience in your body that's not typical. And maybe you experienced it this week, but maybe weren't experiencing it last week. 00;20;18;23 - 00;20;39;14 Kayla Nixon These are things worth getting checked out. And I want to emphasize that to our people specifically because it's so important. Please, please, please, if you experience anything abnormal in your body, please see a doctor to get some answers. And it's okay to ask questions. It's okay to see more than one doctor if you're not getting the answers that you need. 00;20;39;22 - 00;21;08;24 Kayla Nixon But I want to empower people that our health is in our hands just as much as it is in the healthcare systems hands. And so I founded Uterine Care Collaborative to put some of that information. I can't cover it all, but at least some of the information about cancer, PCOS, fibroid, endometriosis. You can find a host of information at Uterine Care collaborative.com that can be a starting point for you. 00;21;08;27 - 00;21;34;20 Clovia Lawrence Well Kayla, it's been a wonderful show. Thank you for sharing your story again. For folks who are just joining us, you can go to Uterine Care collective.com. That's Uterine Care collective.com. Early detection is key. It is. If something doesn't feel right just because you're bloating, it doesn't mean that you have a cancer diagnosis. But if something doesn't feel right in your body, go to the doctor. 00;21;34;24 - 00;21;57;00 Clovia Lawrence Seek out a general practitioner. If you're not sure, you can go to VCU Massey Comprehensive Cancer Center. That doesn't mean you have cancer, but they will do your general your general practice of your physical and more. That's why I go to get my mammogram. No, I've never been diagnosed with breast cancer or any cancer. But if you if you feel confident and you're not sure where to go. 00;21;57;04 - 00;22;18;15 Clovia Lawrence Go to the VCU Massey Comprehensive Cancer Center. And Kayla Nixon, thank you for sharing your story, man. You were diagnosed at the age of 24, and hopefully this does help our younger women to encourage them because nowadays, with all this happening in the world, when when you're young like that, you're like, oh, nothing can happen to me. I'm young. 00;22;18;22 - 00;22;24;14 Clovia Lawrence That happens to all people in their 40s and 50s. And you say, absolutely not. All right. Kayla? 00;22;24;16 - 00;22;31;06 Kayla Nixon Absolutely not. Anything can happen to you at any age. So it's important to stay on top of these kinds of things. 00;22;31;08 - 00;22;49;08 Clovia Lawrence Well, that's how we're going to sum it up. Kayla Nixon, thank you so much for sharing your story. She's with the Uterine Care Collaborative. You can go to their website and do Uterine Care collaborative.com. I am Community Clovia, and that's going to do it for our community conversations. The Black Health Wellness podcast.