Naniki Seboni survived malignant melanoma | surgical intervention | chemotherapy | radiation

DESCRIPTION

Naniki Seboni survived Stage III malignant melanoma, but hers was an arduous journey.  At age twenty, she admits she was slow to seek medical attention for an unusual-looking mole on her left leg; and it was medical attention from a neurologist who noticed something wrong and sent Naniki to a dermatologist.

The dermatologist told Naniki in 2015 he needed to remove the mole, but needed to perform a biopsy, and that Naniki would need to return in a few weeks to get its results.  When Naniki, of Johannesburg, South Africa, did return, she was told they had to take extra time to go over the biopsy to make sure it was correct.  Naniki is black and its is very rare that black people are diagnosed with any type of cancer.  However, the doctors were sure that Naniki had Stage III malignant melanoma.  They explained all the details of the diagnosis and what led up to it, but Naniki says she comprehended virtually none of this vital information.  All she remembered was that she was being told she had cancer, and that this was the deadliest form of skin cancer.

The closest thing to good news she received was learned she would not have to undergo chemotherapy, immunotherapy or radiation treatment.  She was told her only treatment option would be that of a surgical intervention.

This was an extremely tough time for Naniki Seboni.  At the time of her diagnosis, she was still mourning the death of her father.  She was seeing a therapist, and having a difficult time coping on an emotional, psychological and spiritual basis.  On top of this came her cancer diagnosis and a waiting period of six months before her treatment. 

Naniki was quite relieved to learn her surgery was a success when doctors informed her she was in remission.  Because it was so unusual for a black person to be diagnosed with skin cancer, her story gained quite a bit of publicity via numerous media interviews.

Naniki took this opportunity to let black South Africans know they are not immune from skin cancer, and that they, too, need to make periodic visits to a dermatologist.

Additional Resources:

Support Group:

Cancer Association of South Africa  https://www.canza.org.za

TRANSCRIPT

Bruce Morton: Greetings and welcome.  This is the Cancer Interviews podcast and I’m your host, Bruce Morton.  Our guest on this episode was diagnosed with melanoma, and though it was not detected early, she rallied and survived.  She is Naniki Seboni of Johannesburg, South Africa, and now we are going to hear her story.  So, here she is, and Naniki, welcome to Cancer Interviews.

Naniki Seboni: Thank you so much for that wonderful introduction.  I am so glad to be here.

BM: Naniki, we like to start our interviews the same way every time, meaning we would like to learn more about you exclusive of your involvement with cancer.  So, if you would, tell us about where you are from, what you do for work and what you do for fun.

NS: Fun, what is that?  As you said, I am Naniki Seboni, I am from Johannesburg, but more specifically, I am from a township called Soweto.  I am sure if you have heard of apartheid history in South Africa, Soweto is one of those places that is mentioned.  That is where I was born and where I reside now, and this is where I am enjoying my early thirties.  I am a cancer survivor, I am a cancer speaker as well as a cancer facilitator, but outside the cancer space, I am an actress, a presenter and I absolutely love being on stage.  I find it comforting that my broadcasting background has led me to a place where I can use my story to share and educate more people.  I think I have been trained pretty okay for this cancer space.  Outside of that, to have a little bit of fun in this crazy world of ours, I enjoy hiking, which can be quite tricky when you are a melanoma survivor, but I just thoroughly enjoy being in the great outdoors because it has always been something that I had loved doing, so anything that requires me to be outside, I’m there.

BM: Wonderful.  It’s great what you are doing present and future to help in the fight against cancer in terms of your advocacy and your awareness.  Now in terms of your cancer journey, when did you start to notice something wasn’t quite right and how did it manifest itself?

NS: I think there were many points when I should have acted.  It wasn’t just one specific point.  My first mole developed when I was seven years old, and my second mole developed when I was twenty years old.  There were points in my life when should have been proactive, but we can blame the seven-year-old self on being a child and being twenty years old, we can blame that on the naivety of youth.  I think when I did eventually act on my health in that space, it was because I was seeing a neurologist and she was about to discharge me and something inside of me said she needs to take a look at my mole because I didn’t know there was another doctor who, in this instance a dermatologist who would be able to pinpoint exactly what was wrong with my mole, so my neurologist became the one who took a beat on my behalf and said she needed to get me to a dermatologist ASAP.  So, it wasn’t really me.  It was my circumstances at the time and my doctor pushing for it.

BM: We’re confident you’ll be able to learn some tips and tools from this episode to help you through your cancer journey, but first we’d like to invite you to give us a ‘like’, leave a comment or review below and share this story with your friends.  Kindly click on the ‘subscribe’ button below and click on the bell icon, so you will be notified when we release our next cancer interview.  And if you or a loved one are facing a cancer diagnosis, please click on the link in the description and Show Notes below to check out our free guide, “The Top Ten Things I Wish I Knew When I First Got Cancer.”

And for you, Naniki, when you first got cancer, let’s please pick up the story from the point in which you were referred to a dermatologist.  What happened then?

NS: I had never been in a space like this before.  I noticed there were all types of charts on the walls, ‘skin this,’ ‘skin that,’ but nothing in my mind is telling what I am about to go into could be one of the conditions shown on the charts on the wall.  So, the doctor sees me and checks my entire body, but most specifically he checks where the mole is.  The mole was located on my left leg.  He just checked it, and he was a bit somber about it and because this is a teaching hospital, he had these students there surrounding him and he was asking them questions and I am just sitting there asking myself, “What is this?  What is going on?  What are these terms?”  Eventually he tries to explain to me that he was going to remove the mole, that it looked quite suspicious to him, that they were going to perform a biopsy and that I would have to return in the next couple of weeks to get those results.  I don’t want to lie to you, Bruce, I was nonchalant about everything and thought this horrific mole that had been causing me so much pain and embarrassment is finally off my leg, and I was glad for that, but I didn’t think it was anything serious, I didn’t think my life would be changing with a melanoma diagnosis.

BM: This diagnosis.  The day that you learn of it, obviously cannot be a good day.  Each of us is different, each diagnosis is different in its severity, so each of us might have a different reaction to this news.  How did you react?

NS: It was very difficult.  To take one step back, I was back at the hospital for another checkup, and I had gone in the specific date they had told me to come in, I learned my results were not ready.  Again, I didn’t think much of it.  So, when I went in a week and a half later for a different appointment.  The doctors sat me down and there was a sternness to my doctor and I think what got me a little bit worried in the moment was the fact that she brought somebody else in; so, if it was just her by herself, I thought that’s fine, she can just give me the results, but the fact that now they were calling in the professor to be the one to give me the diagnosis, I knew something was strange, something was off.  They proceeded to tell me they had done the biopsy and it took a little bit longer because they wanted to make sure because somebody of my genetic makeup wouldn’t have a diagnosis such as this.  They needed to make sure.  The doctors said to me I had Stage III malignant melanoma, and obviously, medical terms, I have no clue what this was, and they proceeded to say it was skin cancer.  The first thing that went to my mind was, “I’m black,” because inasmuch as I knew, the little knowledge I had about skin cancer, I knew it was associated with white people.  I had never heard of a black person being diagnosed with skin cancer and now they tell me I had melanoma?  My whole life changed.  When tried to explain to me the severity of what melanoma was, I went into a daze. I can’t remember one word they said to me because apparently in that moment they told me what the melanoma was, what causes melanoma, how they diagnosed it, what forms of treatment would be available for me and I spaced out; and I think it is such an unfortunate thing in the moment because I am sure they were giving me really important information, but I just couldn’t grapple with the thought of me having cancer, number one, and then, number two, skin cancer, and then they told me it is the deadliest form of skin cancer.  I really could not come to terms with that diagnosis, and everything that happened after the diagnosis was just downhill from there. 

BM: You had briefly talked about treatment options. Did you have treatment options or was there only one way to go?

NS: There are treatment options that are available; but for me, I didn’t have any chemotherapy, I didn’t have any radiation, I didn’t have immunotherapy.  All I had was a surgical intervention, and just like that, my cancer was gone.  I still can’t believe my luck with that because I thought anyone who goes through cancer will experience chemotherapy, and that wasn’t the case for me.  Even as I continue to grow in the cancer space and grow in the melanoma community, I find that I am still a bit of a rarity, with not having the chemos and the radiations and the immunotherapies because a lot of the people who also went through melanoma had many other options within their treatment, so, I don’t know why my only option was surgery, but I am certainly glad it was because I don’t think I was mentally prepared for the effects that chemotherapy would have done to me.

BM: The surgical intervention.  From a distance, it still sounds rather daunting.  For you, what was the toughest part?

NS: The toughest part about this whole thing, Bruce, even as I say to you that there is the physical aspect of what chemo can do to a person, but because of the time of my diagnosis, I was still mourning the death of my father, I was going to therapy and, emotionally, psychologically, spiritually, I was just in the worst place of my life.  When the diagnosis came, from diagnosis to treatment, it took me six months.  I couldn’t come to terms with it.  More than anything, facing my mortality at the age of 24, I felt like it was just better for me to die.  I didn’t think that any part of me would be able to go through cancer treatment by any means of the imagination, and for those six months, I was living a lie.  I was wearing a mask every single day I had to go to work.  I would get in my car, I thought I was ready and halfway through I would turn around, go back home and curl up in a ball and cry my heart out. I couldn’t understand what cancer was.  I couldn’t understand what that was going to mean for me and my body and my career at that time.  Another thing about chemo that a lot of people are also afraid of is the aspect of losing one’s hair.  I thought, “I don’t want to lose my black girl hair.  Oh, no!  I could lose everything else, but not my hair.”  The entire time I was battling with my mental state.

BM: And in a situation like that, it would really help if you got some kind of support.  Looking back at sources of support through this very difficult time, what are some of the persons, or entities that came to your aid?

NS: At the time, I couldn’t really speak to my mother.  She was still in shock, I was still in shock, my father was still in shock, but he was suggesting I google this and google that, said there was all kinds of information and here is how we will deal with this.  He was telling me about all these holistic ways that we could deal with this thing, and it wasn’t working.  And I remember it was a Friday morning, it was one of those mornings in which I couldn’t get out of bed.  I remember having to pray and trying to gather myself.  In this prayer, I said to God, “Help me with this.  I don’t know how to cope with this diagnosis.”  I remember this so deeply in my heart, and I heard this voice that told me to get in touch with CANSA, the Cancer Association of South Africa.  So strange.  I got up from the floor and I picked up my phone and got in touch with CANSA and literally on this Friday, my life was saved by this organization because the support I got from this complete group of strangers was more than anything I had received in the six months from diagnosis to eventual treatment.  What I found was that they led me to a Facebook support group called the Champions of Hope and the people in that group were so amazing.  That was on a Friday and the next Monday I went straight to the hospital because I did not want to let all those people down.  I finally felt like I had a reason to champion and fight this cancer head on, and that Monday I was ready to rock and roll against cancer and I never would have been able to do that without the support of the Cancer Association of South Africa.

BM: If you would, tell our audience about some of the things that CANSA can do for them if they have a need.

NS: The great difference about being diagnosed in 2015 and 2023, is a lot of the resources have been updated.  Now they have a free telecounseling line for people in South Africa that people can call and get that one-on-one support via telephone.  I didn’t have that in 2015.  Right now, patients, loved ones, caregivers, anybody who is looking to support their loved ones, can call this line and speak to somebody who can walk them through, having patient navigators walk them through the journey of cancer, which is what I needed at the time. I needed to understand from A to Z what would this journey mean.  One is fortunate now that they have the resources and then there is the support group that I mentioned.  We have special events.  There are so many resources where people can find strength and knowledge and be able to find a community for themselves so they don’t feel they are alone the same way I had felt before.

BM: If you like to contact the CANSA website, the address is www.cansa.org.za.  Now, at some point, Naniki, things had to change for the better, and if you would, share with us that trajectory and what it was like.

NS: When things got better it almost felt so surreal because I had been living in quite a depressive state for such a long time that I remember the day doctors declared me technically in remission, I thought there must be something else to this.  It can’t be that easy.  That still took me a little bit to come to terms with.  I think the moment that I realized things were looking up is when I had the Cancer Association of South Africa reach back to me and ask how my treatment was going.  They shared my story on the website and with that, I knew I was okay.  I knew I was on the road to great things to come.  I knew I was on the road to recovery for my physical body and my mental health as well, and from that, almost like a snowball effect, things started happening. My story was such an anomaly, this newspaper, that radio station, they wanted to hear my story, and I wondered whether it was impactful to people.  Then I really got to take it all in, Bruce, and I realized this space I was in, in the melanoma community, even to this day I am the only black person there.  So, I know that with my story, I get to impact the majority of the population of my country, people who still have a belief that skin cancer is a white person’s disease, I stand up and say, “We can also be impacted by this disease.  Yes, we have the darker skin, but that does not mean we are immune.”  So, I found that sharing my story and my vulnerability about my fears especially, then people started to connect with my story and connected with who I was, and finding this victory over cancer was the cherry on top.

BM: Excellent, Naniki.  We are going to start to wrap up now, but I want to hear the answer to this question in your words because I think I know the answer to it, but again, I want to hear how you would articulate it.  But if you could reach out to anybody listening or watching, and could articulate the importance of being seen by a dermatologist, how would you state that?

NS: Ultimately, I believe that each and every single person needs to have access to medical care, first and foremost, and in my country, that’s not always the case.  You find that your closest hospital is some 400 kilometers away, so there is a need first for people to have access to medical care; and with that comes understanding what each doctor then does.  So, when we get to the point in which you are seeing a dermatologist, that’s a specialized doctor, and the power of seeing somebody like a dermatologist is that the skin is the largest organ of our body and we may not be so concerned about it because it’s there, it’s protecting us, it’s keeping all the gooey parts inside, keeping everything together, but we don’t necessarily pay too much attention to it, so if there was ever a word I would say to people is that, you should know your body because nobody knows your body better than you do.  You know when there is a new lesion, a new mole, a scar, a scab and keep track of it.  That’s what I did at first, before I even understood what was going on with my body.  I was tracking the evolution of my mole.  That helped me afterwards and I knew that even when I went to my dermatologist, I was able to show them how my skin kept changing or my mole was changing, they felt empowered.  So, know your body, have self checks and just really be open if you are finding something new on your skin because that could be the difference between a life-saving procedure or you just being ignorant.

BM: And we certainly prefer the former to the latter as far as that goes.  Naniki, we are going to conclude this episode, but we want to thank you for taking the time to talk with us, sharing your story, both past and present and we know that there is a future to it because you are going to continue to get the word about the importance of getting checked and get the word out about your story and how it has evolved in a very good way.  So, again, Naniki Seboni of Johannesburg, South Africa, thanks very much for being with us on Cancer Interviews.

NS: Thank you so much, Bruce.  I appreciate it.

BM: And with that, we wrap up this episode, and as we do so, we want to remind you that if you or a loved one is on a cancer journey, you are not alone.  There are scores of people out there, just like Naniki, who can be of help with information and/or inspiration.  So, until next time, we’ll see you on down the road.

Additional Resources:

Support Group:

Cancer Association of South Africa  www.canza.org.za

SHOW NOTES

TITLE:  Naniki Seboni, Skin Cancer Survivor – Johannesburg, South Africa

When Naniki Seboni had a dermatologist check out an unusual-looking mole on her leg, she was shocked to learn she had Stage III malignant melanoma.  Thankfully, through a surgical procedure the mole was removed and so was the cancer.  She survived and now gives back by advocating for others diagnosed with skin cancer.

Additional Resources:

Cancer Association of South Africa (CANSA): www.cansa.org.za

Time Stamps:

02:51 Naniki first noticed an abnormal mole on her leg at age seven, then at age twenty.

04:56 She recalls her first visit to a dermatologist.

07:02 Her reaction to a diagnosis of cancer.

09:05 After the diagnosis, she learned more about melanoma.

11:20 Naniki discusses her treatment regimen.

13:48 She faces her mortality.

21:05 Naniki describes what it was like when she went into remission.

24:00 Importance of seeing a dermatologist.

KEYWORDS (tags):

skin cancer

cancer

cancerinterviews.com

melanoma

bruce morton

chemotherapy

malignant melanoma

naniki seboni

immunotherapy

dermatologist

radiation treatment