For this episode of Karger’s The Waiting Room Podcast, we spoke with cancer survivor and patient advocate Naniki Seboni about her experiences of being diagnosed with stage 3 malignant melanoma at the age of 25. We also discussed what should be done regarding prevention, screening and awareness of skin cancer – not only in her native country of South Africa, via the Cancer Association of South Africa (CANSA), but also in the rest of the world.

Please note that Skin Cancer Awareness Month is held in May each year.

Note: The statements and opinions contained in this podcast are solely those of the speaker.

Podcast Episode

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Transcript

Hello Naniki, and welcome to the Waiting Room podcast.

Thank you. Hello, Alex. Thank you so much for inviting me to be a part of the session.

My pleasure. Now, first of all, please tell us a bit about yourself and your patient journey.

Yikes. So, I was diagnosed with stage 3 malignant melanoma in 2015, and my whole life changed, you know. I went from someone who had sensitive skin, you know, when I was exposed to excessive sun exposure, to somebody who was now dealing with a life-threatening cancer diagnosis. And I have to tell you, you know, the pre-cancer Naniki was fearless, she was ambitious. And then the post-cancer Naniki started to live her life on purpose. So, there was definitely a huge change in my life in terms of how I was before the cancer, how I was after the cancer as well.

Yeah, so my journey, my journey was really, I would say, had a big focus on mental health. You know, most patients deal with the physical, you know, having the side effects of chemo, radiation. Mine was a bigger battle for my mental health.

Okay. So what was your initial reaction to that diagnosis of stage 3 malignant melanoma, which sounds pretty scary in itself. You just mentioned it shortly.

Yeah. So, my initial reaction from, you know, the doctors, you know, giving me these horrifying names, as you can imagine: I was at the hospital for a different checkup, and I just thought, “Oh, let me just head over to, you know, to Dermatology”. Because I hadn’t received my results in over a month. So, I’m literally just minding my own business, you know, casually walking to this department, and I get there and I see the doctor. I let her know: “Hey, do you guys have my results?” And she says to me: “Oh no, go and, you know, sit in a consultation room.” And I wasn’t necessarily expecting that they would have my results ready. I was just hoping that at least there would be a way forward.

So, the doctors decided to let me into the consultation room, and when I was in there, two lab coats, two white lab coats, walked in and basically became the destroyers of my life in that moment. And I knew that something was wrong from the looks on their faces. But, you know, I just thought it would be something so, so minimal. Something like, you know, I’d have to, like, to use a new ointment on the scar that I’d been left from the biopsy or something, you know, really small like that. But they said to me, “You know, Ms. Seboni, you have stage 3 malignant melanoma”. And with much confusion I asked: “What is that?” And the doctor responded and said: “It’s skin cancer.”

And in disbelief, much disbelief. I said to them, “But I’m black”, because it had never occurred to me that a black person could be diagnosed with skin cancer. I had this misconception about the disease that, you know, it was a white-person disease. And in that moment, I felt lost because, you know, a belief of mine had been shattered in that moment. And I begged the question: What else was I wrong about?

I see, yeah. So, did you experience any kind of stigmatization? I mean, you’re rather light-skinned for a black person, so to say, but was there any kind of stigmatization after the diagnosis or previous to the diagnosis when you were probably trying to take care of yourself anyway regarding sun exposure? And you just mentioned myths about sun exposure or even skin cancer, as you said, that you were quite surprised that you could even get it.

No, I definitely did experience stigmatization. I think for me, growing up in Soweto, you know, just being a light-skinned little girl. And it’s not that I was the only light-skinned girl on my street. There was another girl, and it’s not like my skin tone was an anomaly. No, we have all kinds of shades in South Africa, you know, beautiful light skin tones. And I found myself experiencing even from that age, even though I didn’t have the terminology for it, but colorism, you know, amongst my black friends. So, granted, I was lighter than the other girls, but it became something that, you know, I started to feel a little bit uncomfortable about it in my own skin because I had to use sunscreen at some point.

My parents always told me to, I guess, stop playing, you know, in direct sunlight. I had to play in the shade, or the kids would have to come play in my yard because we had trees in my yard. And, you know, it almost seemed like I was experiencing some sort of privilege, so to say, because they were not living their lives the way that I was. I was using sunscreen. Nobody was buying sunscreen at the time. I was swimming; none of my black friends was swimming at the time. You know, I was wearing hats constantly, even in school. As I got to high school, I’d carry sunscreen in my bag. I had, a multitude of hats with me, and, you know, I played a great deal of sports.

So, my friends used to kind of tease me and say that I wanted to be like a white girl, because I guess the actions that I was taking, we normally saw it with the white kids in school. So, I didn’t feel very comfortable in my own skin from a young age. And I think then it also correlates to why then my beliefs of skin cancer would be that this would be a white people disease. Because black people look at their skin and the melanin, you know, and think that this is like the superpower, you know, superpower thing that’s on their bodies and, you know, you wouldn’t get affected by the sun. But I really experienced quite severe sunburns and nosebleeds, just excessive irritation of my skin. So I obviously did not enjoy being teased and taunted about having to take care of my skin. But even from a young age, I knew that my skin was different to everybody else’s, especially in my community.

Okay, I see. So, after that biopsy and the diagnosis, which coping mechanisms did you develop? You mentioned mental health previously. You also mentioned that there were some learnings and insights, for example, that you were able to get skin cancer after that. How did you cope with that?

I’ll be honest with you, Alex. I didn’t cope. I didn’t. I wish I had been stronger after my diagnosis. I wish I had kept it together. I wish I had been more present, you know, because after my diagnosis, I went home to, sort of say, face the music. And I believe that right then I started to die on the inside because I didn’t have the will to live. And I had decided to not fight before I had even gone to my follow-up appointments. The thing about the diagnosis is that, you know, after doing the research and understanding that it was a deadly, like life-threatening diagnosis, it crushed me. It crushed my dreams. It crushed my hopes. And when you’re hopeless, you feel like there’s no point in living.

So I had, in that moment, succumbed to the notion that cancer was going to take my life prematurely. And one of the biggest mistakes I think I made was around time, because when my lecturer had seen my mole, you know, he showed a great deal of concern. And this was now a white man. And he told me: “Look, you need to get the thing checked out.” And I didn’t do anything about that. It took me over a year to eventually go and see, you know, a doctor.

And then even after my diagnosis, it took me six months to go and get the surgery to actually get the melanoma removed. And in all honesty, I was scared, you know. I had lost my father three years prior, and he was like my security blanket. And I no longer had that security. So, I felt like I couldn’t face the world, let alone a cancer diagnosis. So, my biggest takeaway is that if anybody suspects anything, if anybody sees anything, if anybody tells you, like, this could be a matter of concern, is to definitely act more swiftly.

Time is sometimes, I think, an illusion. And I think we believe we have time to do things and we have time to go to the doctor. And sometimes you need to act immediately, because if I had acted sooner, I wouldn’t have had such a late-stage diagnosis, I believe.

Understandably so. Yeah. I was just going to ask about any potential advice to others that you could give, but that’s basically that important piece of advice, I think, to get it checked out as soon as possible, right?

Definitely.

And in your opinion, how could more awareness of skin cancer be achieved? Not only in South Africa but also in the rest of the world, I think, how to make people more aware and how to take care of themselves and act swiftly?

Well, I’ll note that last year I did something that I always wanted to do, I guess, since my diagnosis. I took a leap of faith, and I did a ten-school skin cancer awareness tour in Soweto. And what I had found was that definitely there is a need for more awareness through education work that needs to be done. Because the number of learners who came to me afterwards to show me their suspicious moles, to tell me about the challenges they’ve been experiencing in the sun, you know, and obviously to also tell me that, look, sunscreen is expensive, you know, is there an alternative for them to use? You know, because, I mean, a bottle this size is, and a good bottle I mean, could be 300 Rand, you know.

So, somebody who’s living in a township, who is going to a free public school, you know, sunscreen is not going to be the first thing you look at. So, I had to really engage with those kids and say: “These are the alternatives. Instead of you maybe using the sunscreen, wear a wide-brimmed hat.” Right? And I literally had a number of hats with me. I had a cap, a baseball cap. I had a bucket hat. I had a wide-brimmed hat, and I had one of these, ah, what do they call this hat now? I can’t remember it, but it looks like one of these safari hats [laughs]. So I showed them, you know, these different hats and tried to explain to them, you know, the level of sun protection that they would get from each hat.

So, obviously, if you’re wearing now a baseball cap, it only covers your forehead. Then what happens to your ears, what happens to, you know, your neck and all those things. And so making them understand that they are alternatives to not having to utilize the sunscreen because it’s an expensive commodity to have, so I went through those little exercises with them. And having them understand that, you know, seeking the shade is one very important thing. I mean, it’s hot, this side [laughs]. It’s really, really hot, this side. I’ve been to Germany a few times and I never got to experience like summer, like we have this side. So, it’s having to make them understand that, you know, during particular hours of the day, your 10 a.m.’s, and for me it is not even 10 a.m. I say from 8 a.m., because the sun is already up and it’s already shining at that time.

But it’s just to understand, the, what do we call it, the UV exposure at that time of the day, what it looks like for them. So I really went into as much detail as I could with these kids, and I’m so grateful that I had the opportunity to do something like that. And for me, the push to do such a school tour is because I understood that, when I was going through those challenges with my skin, I was the same age as these kids. So, I understood that if I had had this knowledge prior, perhaps, perhaps, Alex, my life could have changed. Perhaps I wouldn’t have had such a late-stage diagnosis.

And if you incorporate, you know, new lifestyle habits into your life, I think you can definitely grow into that, into your adulthood and be able to share that even with your kids and with your family. So, we end up having now a generation of people who are more sun-smart and sun-aware. So, I definitely think that we need to be doing more education through awareness in the schools, in the school systems, to get these habits learned from a young age.

I completely agree with you, and I was just going to mention the “Be Sun Smart” campaign or the ABCDE infographics, which are really helpful. And that leads me to mentioning CANSA, the Cancer Association of South Africa, which you are affiliated with as a cancer survivor, and you are even an advocate for them. Did you go to the schools as an advocate, or was that prior to that?

I’ve been an advocate with CANSA since, I mean, I was diagnosed in 2015. So, literally since then, but in the capacity I went to the school, I went there as a multitude of people just in one. I was there was a cancer survivor. I was there as a CANSA advocate. I was there as a Miss Township South Africa second princess finalist person. I mean, I was there in a lot of capacities [laughs], but what I understood is that, you know, from my journey, right, like I said, being diagnosed in 2015, CANSA, the organization, and even through its people, became the catalyst, you know, that led me to “I need to take charge of my health and face my diagnosis.” Because I’ve spoken at several of the events and provided, you know, my support when lobbying for change, even with the current tobacco bill that we’re trying to pass to institute a 100% smoke-free indoor and outdoor places, right?

So, I haven’t stepped in only as just, you know, a melanoma survivor. But I’ve tried to lobby for other things as well under the CANSA umbrella. So, I’ve definitely had different experiences, different experiences with the Cancer Association of South Africa. And I continue to work with them. I continue to be an ambassador and advocate with them because there’s a lot of work that still needs to be done. The infographics that, you know, they share across social media, across their websites have become tools that I use, even when I’m doing the school tours.

So, I’m glad and really grateful that I had, you know, the know-how at the time of my diagnosis to get in contact with them. And thankfully, I’m still alive and I’ve, you know, been able to have this kind of relationship with them because I know that at any moment, if I’m going through something, whether it’s, you know, in emotional capacity or if I have to go to the hospital, that if I’m struggling, I can always call them and they can be able to assist me, whether through telecounseling or through having one of the advocacy managers get in contact with the hospitals to say: “Look, we have a patient who’s struggling with this. We need you to help.” So, they definitely help a lot of people in our country to really get the treatment that they so rightfully deserve. So, I’m glad I’m associated with them.

Sounds great. And as we’re approaching the end of the interview, here’s my last question for you. What are your plans, and probably also CANSA’s plans, for the upcoming Skin Cancer Awareness Month in May?

Boy, that’s a tough one! And I really want to go back and do the tour. I really, really want to go back and do the tour, but go to different schools. But because schools have just reopened and the schedules of the kids is a little bit tight, I’m thinking I’m going to push the tour to just before summer so that it’s fresh in their minds, you know, when we’re doing that skin cancer awareness.

So, for now, I’m definitely going to continue, doing the awareness that I’ve been doing. I’m definitely going to continue using the infographics from CANSA, and we’ll be doing a lot more interviews and sessions with other organizations, where I’m able to share my experience as a cancer survivor and, this particular way, a melanoma survivor. Because the thing about melanoma that a lot of people in South Africa, and especially people of color, don’t understand is that people of color get diagnosed at a late stage. And the thing about a late stage diagnosis is that you have a less than 20% five-year survival rate.

So, I need to continue to drive the message that, you know, prevention and screenings are going to be a lifeline for them. I definitely want to continue with those efforts, those “CANSA wins” efforts, and when CANSA calls I’m definitely there to answer. So, we’ll keep doing what we can do this side.

Excellent, Naniki, that’s great! Many thanks to you for telling your story, and many thanks for taking the time today, and I wish you all the best. Many thanks again.

Thank you kindly, Alex. Thank you so much to every single person that will be able to actually listen to this and, you know, understand a little bit of a melanoma survivor’s journey through my story. And I’m so grateful that I’ve really come to the other side of this journey. I mean, I’m eight years now cancer-free. And I want to continue to do this work because it’s really important. Skin cancer is on the rise in the whole world, and people need to know and be aware that prevention and screening will be a lifesaver for them. So, thank you so much for allowing me this opportunity to share my story and to my word of advice to everybody that will be listening. Thank you so much, Alex.

You’re welcome, Naniki. Many thanks.

Photo: Stan Santho Photography