Listen to THAT Voice; When You Know Best! (Guest Elea Vander Burgh)

Here’s a thought that may seem strange; you can disagree with your doctor. Sure, they have the diplomas on the wall and you’re the one in the paper gown, but remember; the doctor works for you!

In this episode of our podcast An Unexpected Life, you’ll meet
melanoma survivor Elea Vander Burgh. As a 17 year old high school student, Elea
stubbornly stood her ground when her dermatologist brushed aside a questionable mole as nothing. Elea demanded it be removed. The result; a melanoma diagnosis that possibly saved her life.

Now a student at Baylor University, Elea shares her inspirational story with
Marianne to illustrate the challenge and power of self advocacy at
any age, the importance of shopping for a good dermatologist, and the
magic of developing a good scar story!

What You’ll Learn in This Episode
✅ Why it’s important to listen to your inner voice.
✅ The value of advocacy and saying no!
✅ The hallmarks of a gold star dermatologist.
✅ The importance of finding a medical “team” post diagnosis.
✅ Sharing your story with friends.

Links
🔶 Screening to Save Your Life! How to Find the Best Dermatologist https://bit.ly/44dYnWO
🔶 The Difference Between Melanoma and Skin Cancer: Awareness That Could Save Your Life. https://bit.ly/45hm6q7
🔶 Education to Save Young Lives / The Basics of AYA Melanoma https://bit.ly/3ZVYqDx

Want to hear more episodes of An Unexpected Life? Find them here: https://clairemariefoundation.org/podcast/

Claire Marie Foundation Mission 

“ The Claire Marie Foundation provides clarity and hope in the fight against adolescent and young adult melanoma through awareness, education and prevention. 

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Transcript

SPEAKER_01 0:00

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SPEAKER_03 0:30

Hey everybody! Is this not great? It is summer, finally June, right? It's the time of year when we get to do what we want to do rather than everything that we have to. It's very easy to uh want to push off a few have to's though, which means taking care of yourself because come on, who wants to go to a dermatologist's office in the middle of summer? You'd much rather be at the beach or out on your bike or just enjoying life. But it's so important to remember to keep an eye on your skin, especially this time of year, because it can change really quickly. And more times than not, I think I want you to understand one thing. You need to listen to yourself. I don't mean talk to yourself. We don't want people to wonder about you. I'm talking about that gut feeling when you're putting on your sunscreen or your lotion, and what was that? That wasn't there before. That mole looks a little different, or something new has popped up. It's really easy to want to push that aside as nothing. But if your gut is talking to your head, there is probably a reason. And it's something that you should do to take care of it, which means, right, going to the dermatologist. Now, it can be overwhelming. I mean, think about it. You're in this little office, all the diplomas on the wall, you're in a paper gown, not really the easiest situation, and nurses are running in and out, and they make you feel kind of like, you know, you're in the way. But keep in mind that they work for you. I know that's a strange concept because they have the diplomas and the knowledge, but you are a patient and they are there to take care of you. And if they're trying to rush you off, just say, slow down now. This is something I really think is important. Advocate for yourself, stand up for yourself because you know your body better than anybody. You know the changes, you know what's important, and you just need to learn to stand your ground. Now, today I'm going to introduce you to an amazing young woman who, at 17, living in Southern California, had the audacity to challenge a dermatologist. She just stood up for herself, and you might say, that sassiness, if you want to call it, actually possibly could have saved her life. I love strong people. I love people that take charge of their life, even if it means opening the door to an unexpected life. Thanks for joining us once more, everybody. I'm Marianne Bannister with the Claire Murray Foundation. For over 10 years, we have been advocating for the prevention of melanoma exclusively in adolescents and young adults, because it's an age group, to be honest, that is very often overlooked. But there is no reason that it should be. It's the number two cancer in adolescents. Melanoma is the number one cancer in young adults. And also, it's the number one cause of cancer death in young women, 25 to 30. Now, even with those statistics, that's something that a lot of dermatologists just can't wrap their brain around because they're so conditioned to think of melanoma as a disease of older people. But that's where you have to advocate for yourself and take care of yourself. There's a little fact here that I want you to keep in mind that young people do not get squama cell or basal cell melanomas. So many times people say, oh, it's just skin cancer. And the word just and cancer should never be in a sentence together. That just should not happen. But squama cell and basal cells are easier to treat because they tend to stick on the surface of the skin. Melanoma is what's super scary because if it's not caught early, it can go into the body and spread. And yet at the same time, it's 99% treatable if you find it early. But young people only get melanoma, they don't get the other types of skin cancer. So that's why you have to stand up for yourself. And that's why I get so excited when I hear about somebody who said, Nope, nope, nope. You're not rushing me out the door. Not at all. And that is my guest today. Hi, Aaliyah. How are you? I'm so good. How are you? Oh, it's so good to see your face. This is Aaliyah Vanderburgh, everybody. And uh, what are you now? 20 students. Yes, ma'am. I love I love the southern yes, ma'am. Just keep saying that. I love it. Uh, you're at you're at uh Baylor, you're a double major in anthropology and French. Is that right? Yes. Oh my gosh. And then just okay, on the side, I gotta do a little shout out because she's also a member of the Kyomega sorority, which I'm an alumni of. So we can't do yeah, there we go. I was gonna say we can't do the handshake right here, you know. I know. But I love it. I love it, little coyote girl. We gotta do it. You know, you grew up in Southern California, as I said, in Huntington Beach. Obviously, you get a lot of sun, you're outside a lot. Did you ever get screened as a kid? Did you ever think this was a possibility?

SPEAKER_02 6:04

It was never anything I had thought about. I can only recall going to the dermatologist when I was 10 years old once, um, and never again after that, um, until I went again when I was 17. So that was a seven-year period from you know becoming a teenager to having never visited a dermatologist.

SPEAKER_03 6:25

You have to tell this story from from, so you are a senior in high school. Let's set the stage here, right? And you're approaching, you're in the second semester and graduation's ahead, and there's senior portraits and prom and all the things that a 17-year-old girl wants to make sure she looks really amazing for, right?

SPEAKER_02 6:44

My senior year of high school, I went, um, I just remember talking to my mom at the kitchen counter and being like, Wow, my birth mole is gotten darker. Um, and so just being curious, my mom was like, What did it look like before? Um, and so I remember pulling up an old photo from when I was 13 before I started high school. There was actually not even a freckle there on my face. Um and by the end of my senior year, it was a dark mole. And so that was when it just kind of hit me, oh my gosh, well, how did I not even realize um that something was so distinct on my face and I didn't realize it hadn't been there forever. Um, and so I mentioned it to my doctor um a few weeks after the fact that I'd kind of realized that. So she referred me to a dermatologist. So just a long process of you know, having then having a doctor appointment. So probably two months went by before I even saw a dermatologist at all.

SPEAKER_03 7:42

And so being in that two months or did it stay kind of the same?

SPEAKER_02 7:46

It was staying the same by that point. Um, so it didn't look any different. But what made me worried was it was gaining texture um instead of remaining like a freckle on my face. And so that was ultimately when I realized that this was not something normal. Um, and so when I did go to the dermatologist, I remember her rushing in, kind of like you mentioned before, um, not even glancing at the mole with like her little I don't even know what they're called. Yeah, yes, dramatics. Yes, she didn't even look. I just remember her like just looking at it with her plain eye and going, that's not cancer, and going to walk out the door. And I go, Wait, like that's awesome, but I want a biopsy. Um, and she goes, Why would you want that? It's fine. And I go, Well, can I tell you like the backstory of why I'm worried about it? Because this is what it looked like before, and this is what it looks like now. She goes, That's just you growing, like that's just what happens. And I was like, I don't, I don't know, but okay, like you're the doctor, and I'm always been a person that has always respected authority. Um, and so it's hard for me to be like, I still don't feel good about it. I want it off my face. And um, my mom's like nodding kind of behind me, like, Aliyah, like, this is not like you. Like, she never kind of saw me talk to a doctor like that, and just kindly was like, Can I want it off my face? Like, I don't know what it is, but it has to get off. Um, so she referred me actually to a plastic surgeon and says, if you don't like the way it looks, then you can get it taken off by a plastic surgeon. And so I was like, that's not the reason. I feel I just had kind of like you mentioned that gut feeling. I was like, something is wrong. I don't know what it is. I'd never assumed it was cancer, but whatever it was, I was like, just get it off of my face, is what I told her. Um and I was like, I don't it's there wasn't it's right, it was right here on my eyebrow. So kind of, and I loved my eyebrow, it's now only half, but um so it's hard for me. And I go, I don't care how it looks, take it off of my face. Especially, I mean, like you mentioned, being a 17-year-old girl, I had Brad photos and I had from, and you know, having something taken off your face and having a band aid like right there on your face for a few months was not the best thing in the world, but I knew it was the right decision at the time, even though I didn't know why it was. And so after insisting consistently for probably five minutes, like I don't want to say arguing, but very encouraging being like, Hey, I am not doing this for beauty's sake. Like, if I was, I liked the mole. So I'm like, Well, I don't want it removed, but I know it should be. So it wasn't until she told me three to six weeks until I would find out the results, and it was two months later that I found out because of my age, they had been sending it to around 10 different laboratories in Southern California because they did not believe that it would have been melanoma. So it had been about four months with cancer sitting on my face, um, which is crazy to think about. And so got the results. I came back for my AP test. My parents were sitting at the counter and go, hey, we got the call um from the dermatologist. Your biopsy is actually cancer. And the first thing out of my mouth was, I knew it. And I was right. I literally go, I was right. And um, I was like, I just wish you would have listened to me. Kind of what followed that was, you know, what happens, so many doctors' appointments. So we actually returned to that dermatologist. Um, we thought me and my mom were like, it's not her fault that she didn't assume a 17-year-old would have cancer. And um, so we kind of felt that it was fair for us to give her a second chance. Um, however, the second appointment was really defeating in the fact she told me that I was paranoid for any of my moles that she would not biopsy or remove any of the moles I was suspicious about, um, and told me that it's not her fault, and was just basically like reprimanded me and like got angry at me.

SPEAKER_03 12:04

No, no, no, no. Okay, let me just stop, keep place in your mind where you are. I don't want to interrupt the story. But for our listeners, this is really, really, really important to understand. Number one, when you get screened, any dermatologist should use a dramatoscope because it allows them to look into the depth of the mold to see if anything's happening, you know, that they can't see. Because if they see something with the naked eye, you've already got a problem. And secondly, once you have a diagnosis, you should have your whole body checked and you should follow up with that through every three months to six months, depending on the severity of it. Oh my gosh, she was reprimanding you for defending yourself, and she missed a melanoma on your face and would not have taken it off if you didn't. Okay, I'm sorry, I'm hyperventilating here. Okay.

SPEAKER_02 12:53

I just remember just being, I mean, I was 17, I was so overwhelmed, and I was having like 10 doctors' appointments a week, and then I was like, I'm the one who has cancer on my face. Why am I getting yelled at by the dermatologist who is wrong? Um, and it was even more frustrating because me and my mom were very much like we understand it can be a simple mistake and was probably not something that was serious, but the reaction to it, I just assume was very much that she had let a 17-year-old 17-year-old go by having melanoma on her face, and she would not have removed it if it wasn't for me saying something. So, I mean, I do think now it was just a reaction. Um, however, it was I remember crying out of like tears of anger because I was like, I'm already going through all of this, plus having a doctor who had made the mistake in the first place, um, that we weren't angry at. Like, we were not mad, we had never flamed fault on her at all. It was just such an interesting reaction that was very overwhelming for me in an already overwhelming time period. Truth be told, we have never seen her since then. I was so and I um absolutely adore him. He even now like has listens to every single worry I have. Um, and instead of being like you're paranoid, it's more let's watch it. And so it's less of a it wasn't so much that I needed every freckle and mole replaced. I'm a very freckly person, but it was more being told I was paranoid after having been the one who had stood up for myself was very interesting to be told after the fact.

SPEAKER_03 14:42

So I yeah, and and I'm sure the dermatologist you go to right now is just championing you, saying, yes, yes, advocate you do my thing, right? When they found it, what stage of melanoma was it?

SPEAKER_02 14:56

Luckily, it was actually just stage one. I remember sitting with my dermatologist, I went to dermatologist oncologist at Hogue in Newport Beach, um, and he became my go-to person. He was so encouraging when he heard my story. I just remember tears getting in his eyes because he goes, if that happened to my daughter, I don't think as like a parent who my parents aren't doctors, they would never have even thought that that could have been a possibility. And so having someone like him was so amazing through that process because he treated me treated me like his daughter in the most loving way. Um and so through that, he just really encouraged me to just be honest about how I was feeling every single day, especially because I was having to skip classes to go get PET scans and go to the oncologist, which is is difficult. And so through all of that, um, he very much so never made me feel guilty about it. And so he referred me to my dermatologist now, um, who is just the he's an amazing listener, which I think is so important. Being a doctor, I didn't realize that was something I should listen for. And a doctor, he sits down and takes time with me every single time, especially after the fact. I remember feeling like a lab sample that there were so many doctors who wanted to talk to me because I was the 17-year-old who had melanoma, and so in that way it was hard because I just felt doctors wanted to talk to me because of what happened to me, and he never made me feel like that. So I'm very grateful for like the team that they put together. Um, it's a team of three of them who just have one of them has been always consistently checks my blood work, does a body scan, one of them um does this like 360 scan every summer.

SPEAKER_03 16:48

Oh, I'm sorry, I'm interrupting you. Every summer.

SPEAKER_02 16:50

No, you're so good every summer.

SPEAKER_03 16:52

Yeah, as you should do. And I mean, just to explain to the listeners, so there's different stages of a melanoma. So there's stage zero, which is in situ, which means it's right on top of the skin, and then a stage one, which is what you had, so it's barely breaking going downward into the skin, and then two is a little bit worse than that. Then you hit three, that's where they check to see if it's and it usually has gone on to uh the nearest lymph node, and then stage four when it's metastasized through the body. So again, you got it early and it's 99% treatable. So you don't have to do any treatments or any drug therapies, you just go in and you get screened, and I'm sure you keep an eye on yourself for 100%.

SPEAKER_02 17:36

I especially after the fact I had gone straight two weeks after getting the surgery. I moved into college with the still stitches still on my face. And so that was when I was still consistently seeing my dermatologist on college, like over Christmas, was told that I had been cancer free um for around six months at that point, and so I saw them more consistently the year following. Now I have my yearly blood checkups, um, scans, all my appointments through all like my team.

SPEAKER_03 18:08

But I have two questions for you. First off, how does a young girl at 17 have the nerve to challenge a doctor? There are adults who I know will go, like, well, you know, I don't know, I wasn't really happy, but I just didn't want to say anything because they're the doctor. How did you have that courage and that backbone to do that?

SPEAKER_02 18:28

Yeah, I honestly, it's funny because I'm one of those people. I'm I'm a person, if like a waiter gets my order wrong, I'll eat it because I don't want to say anything. So doing that to a doctor for me was very out of the ordinary. I've always really respected the doctors in my life and had never had a reason to doubt them. I do think it was especially the doctor who did make me feel that way, I think was just a lack of number one, maturity, and number two, a little bit of making me feel stupid. And I being, I mean, I did don't think I know everything, but I've always been a huge science person and absolutely love science, and so I was like, I'm not like coming in with zero knowledge, and so that's why I had a little bit of that and a little bit of just this voice inside me, and truly, I think it was God just giving me clarity, like He gave me so much strength and some time that was so hard for me. Um, and so honestly, I do think that it was this part of me that was like, I don't care, like get it off my face, and that was especially being, you know, I didn't want to ruin my face. I remember telling my mom, like, it's gonna mess up my grad photos. And I hit the point where I was like, just get it off. Like, I literally said, I do not care how my face looks, get like get it off. And so that was something that I just do feel that I was given the courage. I don't think it was something that I honestly by myself could have had. Um, but I am very grateful for my parents who have always had, like have given me a backbone. Um, and they remind me that yeah, while I'm 18, I'm not a doctor, I don't know everything, but I'm not stupid. And so um, I do think that was something with the encouragement of my parents who have taught me how to speak for myself, um, and also just given clarity by God through it all was the only way I would have been able to do that. Um, I would not have been able to do it alone.

SPEAKER_03 20:33

Definitely had an angel on your shoulder, and your face is fabulous. So there's no worry about that. But but at the same time, it is at that age that how do you tell people around you're going to college, you're meeting new people, and they're like, Oh, what's the scar on your head? You still had stitches, probably. How do you explain that? I mean, or I mean, knowing you're like, oh well, no big deal, but but that's awkward for a lot of people.

SPEAKER_02 21:04

It definitely was. I remember actually I felt bad throwing it on people, especially since I mean, for me, it felt casual because I had gone through um a lot of it and did have to kind of at a certain point you have to treat it casually, or it's gonna pull you down really fast. And so um, I actually remember telling people I fell off my surfboard for the first few weeks because I was too scared, and also I felt scared to just drop. Oh, it was because I had cancer and I had surgery for it, and so that was for the first few weeks. I actually forgot some of my friends that are still my best friends for my first few weeks. I remember a year later I was talking about it and they were like, Yeah, when you fell off your surfboard, and I was like, Oh, we have not had this conversation yet.

SPEAKER_03 21:52

So in in our previous episode, we were talking about um with uh therapist April Moran about. How to address these things. And she worked with my daughter, Claire. And Claire had the same thing because she had to have a skin graph on her ankle. And we were like, What are you going to tell your friends at school? And she thought about it. She goes, I'm just going to say, oh, you should see the shark that bit me. And I was like, really? But it was so like would make people laugh. And it was so out of the norm that they just kind of was like, okay. And they walked on because you just don't always want to have to have that conversation.

SPEAKER_02 22:30

100%. Especially with people you're just meeting. Um, especially now, it is an interesting part of my life that at the time felt really huge. But um, a lot of my best friends that I have met sophomore in junior year, they don't know that part of my life at all. And so sometimes I'll pull back my hair and be like, Oh yeah, my scar. And they were like, What scar? Um, and so it's crazy that some something that you know for me was such a big stress. And having half my eyebrow, I remember I could not look myself in the mirror for probably two months. I would not look in the mirror because I was I hated the way I looked, and so it's crazy now that like the scar is not even noticeable to other people. It is also not even something people when I came to college knew was something I had. Like I was like, I used to have a full eyebrow and I just don't anymore.

SPEAKER_03 23:25

But you don't know unless you and so this is one thing I think because a lot of people are hesitant hesitant to go see a derm because they're you know, it's that fear of what if and then I'd have a scar. Well, it's better to have a scar than the alternative, correct?

SPEAKER_02 23:40

100%, yes, ma'am. Right.

SPEAKER_03 23:42

Because if you hadn't gotten this at a stage one, it could have gotten really bad.

SPEAKER_02 23:46

Yeah, and I think it would have been even more terrifying being away at college having dealing with that. Um, and I I genuinely do think that what I went through has given me so much voice in myself, um, and has developed me. I I mean, I would say I'm a lab person, so if anyone from high school heard me say I was timid, that would not characterize me. But I did was a people pleaser and I didn't want to make people upset. And so it has given me um a lot of chance to learn how to vocalize how I'm feeling, which has been the greatest gift on earth. But truly, I mean, while I don't want to say God blessed me with cancer, um, He did bless me by giving me my community and my parents at that time. I think it would have been something I would not have been able to do while at college by myself with people I didn't know that well, and so you know, thinking about it now would have been honestly more devastating than being at home. And so it's hard sometimes when I think about it and think about how difficult it was to go through that at 17. It is the largest part, I think, to contributing to who I am. Um, and so for that I am so grateful the scar was worth it. I looked, I think I looked sick with stitches. I thought it was kind of cool looking. I was like, I look so tough right now. So I I kind of enjoyed it a little bit. Um, I enjoyed a little bit of attention. I was like, wait, I feel really cool.

SPEAKER_03 25:16

But look at me. I'm feeling bad at it. I was like, wow, I look tough. I I was like, this is awesome. I know that um you you represented our foundation as an ambassador at at Baylor and stuff, and part of that is like sharing your story, which you were so anxious to do. What do you tell other people around you? I mean, I know you're not one of those annoying people who walk around squirting sunscreen on people. That's not the idea. But you would lose friends real quickly that way. Um, but how do you share this information to help others and pass it along?

SPEAKER_02 25:51

Yeah, that was the largest thing. I remember sharing it actually to Kyle Mega um at one of our chapters, and especially because it was a part of my life that actually none of the members of Kyo had known about at all. Um, and so coming in and then not only saying I had skin cancer, but just encouragement in all aspects of health, I think, more than even just in dermatology, but um standing up for yourself is such an important thing. And honestly, doctors are like deserve so much respect. But there is also a part that if you know that you have that gut feeling, and if you have, um, you know your body best. And so learning to voice that and realizing that that is something most people don't do is something I try to teach and encourage the most because, in all aspects, it is so important to like use your voice for that because your health is generally a matter between life and death, it is not a messed up meal at a restaurant, like it is your life, and so um truly being able to offer encouragement that not only through giving the awareness I didn't even know melanoma was something a young kid could get, which was first the awareness with that, but second, the awareness of um, I didn't understand anything related to sun or sunscreen. And to be honest, I loved being somber, and um, that was not relative at all to me having skin cancer, but was something that I love sitting out on the beach with all my friends, and so following that was definitely not only encouraging sunscreen, but encouraging so much more than that. Um, just day-to-day was something I had never thought about and was given so much advice through that process, but just offering encouragement and health at all was the thing that stuck with me the most.

SPEAKER_03 27:44

So Aliah, you know what? I I just love talking to you with you. You're always so bright and happy and junior, you've got your senior year ahead of you, you know, so much still to go. Um, you know, and I'm sure that that you know, you agree that we always encourage people to get screened, obviously. And I think you I I've shared this with you that we had have had a screening program, and we've screened through our foundation over 1,500 young people from 13 to 29. And so I know you felt like you were this anomaly out there, and you became like a science project to all the all the doctors, but at the same time, 16% of the people that we have screened have needed biopsies. So we have found early stage melanomas. Um, we found a lot of atypical moles, and I think that's one thing a lot of people think oh, if it's atypical, it wasn't melanoma. What they don't get atypical is like a step away from where you were. It means something's going on. And at the age you are, it changes faster, it grows, it's more invasive, meaning it goes into your system faster. So you really gotta get it off. And that's where the advocacy, you know, comes in so strong and so important. So, um, and again, just to listeners, just when you're looking at a dermatologist, so you don't get one like the bad one that she had to begin with. When you call to get a dermatologist and get an appointment, you should get a screening once a year as you go to the dentist or you go to the general practitioner, all of that. But keep in mind your general practitioner cannot screen, they don't really know what they're looking at. So many families have called me and have said, hey, the pediatrician or the intern has said it was fine. But, you know, they're brilliant, but they don't know what they don't know, right? So you want a dermatologist with that scope in hand is called a dermatoscope. And it's just like kind of like a magnifying glass, or sometimes they're goggles that they wear on their face. But you want them to use that again so they can see it at the earliest stage. They should give you 10 to 20 minutes, don't let them rush you. Make sure you're in a gown, head to toe. Uh, you want it from your head to your toe, as I said, and because also it can sometimes appear where the sun doesn't shine uh without being too crap, but you'll get to know them well. But give them your time, make the appointment, ask ahead of time, make sure they use a scope that they'll give you the time you need and get screened and stay healthy because that's the good news, right? What you do now is you're just unsafe. It gets screened once a year, it isn't impeding your life. You're just going right ahead, right?

SPEAKER_02 30:22

It truly is something that I think is so small, but makes such a difference. And so I think there is a lot of stigma around it being so scary. And I'm like, it's not like the dentist, like you just have to go. It's it's obviously not bad at all.

SPEAKER_03 30:36

Well, the dentist gives me white knuckle fever. I'm like the worst patient on the planet. Oh, yeah, I'd rather go to the derm anytime. Trust me. Aaliyah, thank you. Thank you so much for joining us. I'm so glad you're doing you're healthy, you look fantastic, you're doing so great. And thank you for um being part of our organization and helping to carry your story out to help other people. That's where it's really so important. I really appreciate it so much.

SPEAKER_02 31:04

Thank you so much for letting me say my story. I really appreciate it.

SPEAKER_03 31:07

It's special. Well, we've been talking about this for a long time, so I'm glad we finally got the chance. I know. Thank you again. And again, we want to remind you uh, if you want to find out more about Aaliyah's story, uh, you can find the link on our website, ClaireMurrayFoundation.org. Of course, notes in our stories and about how to find a great dermatologist, anything you need. Special shout out to our mission partners who make all of our podcasts possible. Castle Biosciences and Children's Cancer Foundation. Thank you so much for helping us to bring Aaliyah's story and other information out there. And in the meantime, it's summer. Go have some fun. Enjoy your life, and live life like Claire. We'll see you next time.

SPEAKER_01 32:18

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