Melanoma Never Discriminates (Guest Jacqueline Smith)

There are a lot of mistaken notions about melanoma out there. Among the deadliest is the idea that people of color cannot develop melanoma and other skin cancers. Nothing is further from the truth.  

In this episode, Jacqueline Smith shares her story of surviving stage three melanoma twice – all before the age of 26 - and her transformative journey into an unexpected life.  Today, Jacqueline is a D.C. based leader in melanoma patient advocacy as well as a wife and mother. Listen as Jacqueline shares her inspirational story with Marianne Banister, illustrating that melanoma can strike anyone of any age, any gender and any race. Melanoma never discriminates!

What You’ll Learn in This Episode  

✅ Why the risk of death from melanoma is higher for people of color 

✅ Why you need to see a dermatologist - not a general practitioner for diagnosis 

✅ The power of pivoting to new adventures in life 

✅ The value of advocating for yourself as a patient 

Links 

🔶 Melanoma Does Not Discriminate https://bit.ly/3HW90m7 

🔶 Jacqueline’s Story; When it Comes to Melanoma - Expect the Unexpected https://bit.ly/3unJtbw 

🔶 Melanoma & Skin of Color - Melanoma Research Alliance https://bit.ly/4iGTk5P 

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.

Follow and Connect

🔶Website

🔶 Instagram

🔶 Facebook

🔶 LinkTree

Transcript

SPEAKER_02 0:00

Breaking news from Good Ranchers. Over 85% of grass-fed beef in stores is imported. Most grocery store meat contains antibiotics, hormones, and harmful seed oils. Good Ranchers does things differently. All their meat is born and raised on local American farms. No antibiotics, no added hormones, no seed oils. Just one ingredient. Meat. Visit GoodRanchers.com and get$25 off your first order with code Ranch25. That's code Ranch25 for$25 off your first order. GoodRanchers.com. American meat delivered.

SPEAKER_01 0:30

Hello, I'm Marianne Bannister with the Claire Murray Foundation. Thank you so much for joining us once again. Don't you just love meeting amazing people? I mean, individuals who take whatever life throws at them, flip it around, turn it into something new and exciting. I have got a wonderful guest today, my friend Jacqueline, who has the most amazing story that she is going to share with you. One that led her to live an unexpected life. Okay, y'all, it is May, and that means melanoma awareness month. It's time to think about the sun and think about all the fun you're going to have in it. It graduation, Mother's Day. Do be very good to your mother. Thank you very much. And uh all the summer plans that still lie ahead of you. Wherever you're going this month and forever, I'm going to be that person. I'm just reminding you now make sure you have your sunscreen with you. Make sure you have your UPF-50 with you, uh, just taking care of you so you can go forth and live a full life. One of the most dangerous thoughts in this world of discussing skin health and taking care of each other and of ourselves is the idea that a person of color cannot be affected by skin cancer specifically melanoma. It is such a dangerous thought because it's so wrong on so many levels. Do you know, for instance, Bob Marley died of melanoma? There you have it. It has been going on for some time. People of any skin tone, because if you have skin, and I know you do, you could develop melanoma. Today I want to introduce you to my friend Jacqueline Smith. I get to call her Jackie. She is a two-time stage three melanoma survivor. She is a patient advocate. She goes out and fights the battle. She works with policy on Capitol Hill. And she is honestly just a force to be dealt with. And we're so honored because she's part of our board of directors at Claire Murray Foundation. Jackie, thank you so much for joining us today. And thank you for having me, Marianne. It's a pleasure and an honor to be here. I just love, you know, we met in 2016 now at Melanoma Research Foundation, where they had you share your story. And again, you exemplify the fact that two points were people never thought it would happen: a young person and a person of color. And you were 22 the first time you were diagnosed. Is that right? Share your story with everybody.

SPEAKER_03 3:23

That's right. My senior year in college, I had a lump in my bikini line. And I went to the health center time and time again. I was told it was an inflamed or infected hair follicle. They thought it was just some kind of pimple or skin issue. But I knew it was something more serious because it was underneath the skin surface and it was slowly growing. So it started smaller. And by the time I graduated, it was about the size of an almond. I went to the health center right before graduation and met with the head physician there. And she said to me, Jackie, that's just an inflamed lymph node. If it doesn't bother you, don't bother it. So I graduated and I knew inside that something was wrong. But I was graduating, you know, it's been four years. Everyone's excited to finally start their lives. Um, and I went with my mom. This was serendipitous and some some aspects. I went with her for her mammogram. And the sonographer or ultrasound text said, This is what um had a fake breast and said, This is what a malignant lump feels like, and this is what a benign lump feels like. And she told us the different characteristics. And when she went through the checklist of a malignant lump, that was mine. I mine checked all of it. I remember she said it's firm, it's slow moving, and it's painless.

SPEAKER_01 4:46

And this was how long after the general practitioner uh on campus told you this?

SPEAKER_03 4:52

Um it was within the year because I was so, you know, graduated in May, and I was referred, I went to my my primary care physician, and he referred me to a surgical oncologist, which was another red flag, alarm bells. And I remember asking him, and I said, you know, why is this a surgical oncologist? And he said, Well, Jackie, I just want to make sure he said, I don't think it's anything serious, but I'm a little alarmed. Right. And that was in February that next year, the following. So I graduated in May. February, I went to see the surgical oncologist and they biopsied it. And by biopsy, they put me to sleep, removed the lump. And that was another situation where like I knew something was wrong because in my consultation with the surgeon, he was very friendly. He knew one of my mom's other doctors. We were talking about vacations. It was great. But when I went back for my results, he was sitting there charting and he wouldn't look at me. And I walked right past him. And I remember that moment of him just keeping his head down. And when he walked into the exam room, he was just very solemn. And um, and he said, Jackie, you have melanoma. And you could have knocked me over with a feather because my first thoughts were, well, wait, I'm not a fair-skinned, middle-aged Caucasian woman. Right. Because that's what we learned. We learned about melanoma in school, but that was what I was told was the risk, and I was, you know, the complete opposite end. Um, and and and at that time, there was very, there were very few options.

SPEAKER_01 6:37

Okay, so I'm just, you know, having a few flashbacks here, but just being with Claire's situation. But at 23, so the wait, the delay, this is the same thing we went through because the lack of education and understanding who is at risk or that everybody can get it. And so when you first went to that general practitioner in the student health services, you know, you're 22, it's a doctor, and she, okay, it's nothing, right? Even though that little gut voice is like, yeah, I'm not right, you know. So you don't know who else to go see. You don't know the steps to take. So you're so lucky that you were with your mother when you got that more clear definition. So when you were died, so it was a stage three when they initially found out.

SPEAKER_03 7:23

Stage three, they never found the primary, so it was already in the lymph nodes. And and that was another thing that I thought, well, typically people think of melanoma as a mole. And that's all I thought. I always thought, oh, you have a melanoma, you have a mole removed, you're fine. Right.

SPEAKER_01 7:39

Little did I know, right? Because to the listener and explaining, if you're if you haven't listened to our uh our previous episodes, there's four different stages. If it's a zero, and the key is if you get it off early, it's 99% treatable, you know. And obviously the good news is you're on the other side of this because you're here talking with us. So we we know yours is a happy story, but it can be zero, which is an in situ, which means it's just on the top of the skin. And then one, it's uh it's there, but it's still super early. Two, it's a little bit worse, and then by three, it goes into the lymph nodes, and then there's different levels of that, and then forest metastasize through the body. So you had to go through treatment for this then. What kind of treatments did you undergo?

SPEAKER_03 8:24

Yes. So I had what they call a radical groin dissection where they removed all of the lymph nodes and my my inguinal lymph nodes, so really your pelvic and groin lymph nodes. Um following that, I was fortunate to qualify for a clinical trial. So I went on the pegylated interferon trial, which um, you know, I had to inject myself weekly with interferon. And following that, I had four months of radiation. And with radiation, you go Monday through Friday every day. And um, and that was that was my treatment.

SPEAKER_01 8:58

Yeah, that's that's the rough course of it. And so that so then did it go away? Yes.

SPEAKER_03 9:05

So well, oh well, you know what? Let's backtrack. So I jumped ahead. So after I was initially diagnosed, um back then, and that was 2004, I was told there was very few treatments, thought I would go to grad school. They said, you're probably not going to do that. You need to rethink your life's plans. The treatment is very toxic. Yes. And I was treated at the top academic center at that time. So I was given options, either we could move through with treatment, and they did want to do the groin dissection then also. And even with that, the surgeon said that I would be deformed because they cut the fat out around the lymph nodes as well, because the cancer cells spread through the fat cells. Right.

SPEAKER_01 9:51

And so he said, you know, you know, so again, as a it seems talk about what just let's just stop a second. Let's just talk about the emotional, forget the clinical. I mean, we'll get to that in a minute. To be so young and be told you're gonna be dissected and then you're gonna be deformed, and then you're gonna be toxic, and you may are they saying you may not have a future, is that what you felt at that point?

SPEAKER_03 10:14

That's exactly what I felt. And and it's difficult because it's it's an isolating feeling. Um, and I think that's one of the things people don't realize that no matter how many people you have surrounding you, very few of them understand that experience. And as someone who's newly finished undergrad, really no one, none of my friends knew what that was like. None of my cousins, no one in my family. I didn't have, I was the only person who'd had cancer in my family. Um, so it was very, very isolating. And I think even on some level level, my friends didn't understand how serious it was either. So that was difficult. Um, and you don't want to be Debbie Downer. Everyone's living their lives. People are starting careers, people are getting engaged, and you know, they called a check on Jackie, and it's another doctor's appointment. So it was, it was difficult. It was a difficult time.

SPEAKER_01 11:07

And when you're going through the thing is with melanoma, chemotherapy doesn't work, so they don't use it. So oftentimes, um, other than radiation, um, whole brain radiation, it would be that you don't lose your hair. You don't have those hall marks where I mean you're not feeling great, you're not looking your best, but you don't have those traditional hall marks of a quote cancer patient. And so people tend to go, oh, she must be doing fine, right? How sick can you be? Right. Like, come on, you know, I saw her, she looks pretty good. If you put makeup on, it all works. And that makes it kind of hard, right? So nobody's really supporting it.

SPEAKER_03 11:46

Very difficult. It's very difficult. Um, so back then at the time, I was given the choice to either go through with the surgery and treatment or watch and wait. If my scans came back clear, they said we can watch and wait. My scans came back clear. And unfortunately, in our family at the time, my dad was diagnosed with um multiple sclerosis and it was progressive and degenerative. So my and it's just my mother, my father, and me. So she was going through enough. We we decided like we'll watch and wait. Um, we watched and waited, and two years later, I had a recurrence. And now I'm in graduate school. It was the same thing, and believe it or not, the very same situation. No, you're fine. Well, maybe it's an infection. And I said, Look, the last time this happened, it was stage three cancer. I need to be referred to a surgeon. And I'll never forget, I saw a general surgeon, and um, he understood how critical it was because he rushed the results and called me himself with the results. And he said, You know, I can treat you. You're gonna need the groin dissection this time. However, I'd suggest that you see a specialist, someone who's who deals with melanoma patients. And he told me this will be your best course. And so I found Moffitt Cancer Center down in Tampa, and that's when I went through and had the total groin dissection and the clinical trial and radiation.

SPEAKER_01 13:10

Wow. And so your point of origin they never did find. Were you one of those cases of melanoma that can occur internally and not from a mole? Is that what you're saying? Or they um no, so interesting story.

SPEAKER_03 13:22

I had a mole removed when I was 19. I believe it was a melanoma. I think that was the one. But it came back as benign, and I so much so I called the dermatologist that I'd had it done at. And he called me back from the car when he'd gotten the message about me. And he said he had been surprised himself that it didn't come back. He remembered me and he said he was shocked that my case came back benign.

SPEAKER_01 13:47

Because oftentimes with young people, pathologists don't realize they're seeing what they're seeing because it can present different, look different, and they're so young. So maybe it went round and round and round. You can't guess, but odds are okay, that was the one. So then you had a second round, you did all those treatments. How many years ago was that then? That was a finished treatment in 2008. So have you been NED since then? Which means no evidence of disease for listeners in the world. So since 2008, you've been clear. Oh, Jackie, it's so wonderful. And now, I mean, you're married and you have little Zoe. I have little Zoe. We're so excited for, you know, you and your husband. And let and and and again, let's talk about that because I know statistically, because like you, uh, people of color assume that you can't get it. It's just thought, oh, well, it's just for the fair skinned, you know, we have enough melanin in our skin, we're protected. That's obviously not the case, but oftentimes medical communities push back as well as the patients. And so when it is found, it's found at a later stage, such as your case. And so you're lucky, but oftentimes the risk of death is much higher in people of color, yes, right, than it is in the Anglo population.

SPEAKER_03 15:13

Yeah. So mine is interesting on another angle because I didn't I had cutaneous melanoma. And I'll be very honest, in all the years and over 20 years since I was diagnosed, I've never met another um dark-skinned person with cutaneous.

SPEAKER_01 15:30

Okay.

SPEAKER_03 15:31

I've not met a single one.

SPEAKER_01 15:32

Okay, and so the other kind typically it's in the feet leptum and a leptum, that's when it goes to the brain. That's what Claire had at the end. But what is the one that when it goes to the feet? It is acryl. Acround.

SPEAKER_03 15:45

So usually acro gets um appears where you don't have sun exposure. So the palms of your hands, the soles of your feet, in between, under the fingernails as well. Right. Um, so I've met a few African Americans who've had that and they've all presented at stage four.

SPEAKER_01 16:04

Really? So it had already had metastasized to other organs in the body by the time they find it. Yep.

SPEAKER_03 16:09

Most of them have had brain mets, and that's how they find out brain metastases, and that's how they've been diagnosed. Yeah.

SPEAKER_01 16:16

So what, you know, in your advocacy, I mean, you've been on Capitol Hill, you've worked with President Biden's moonshot, you have been with Melanoma Research Foundation, Melanoma Research Alliance, you have been in the pharma world, you have been every way, 800 ways. What where you're a patient advocate, which is what I love, because you're that person that can add that voice to it and say, you know, hey, this is really what we need, and this is the direction we should be going. So where are we in this? It's like diagnosis is up. Is that because we're more attuned to look for it? Its UV is more intense. I mean, why is this happening more?

SPEAKER_03 17:03

I think it's a little of both. I think that there's more, more, better awareness. Um, people are getting their skin checks annually and more frequently. People are following up because um we now know that, like you said, if it's caught early, it's 99% curable, not just treatable, but curable, which is amazing. Um, but also there's um people still tan more and um the ozone, we have a lot of um issues. Environmental issues. We have a lot more environmental um issues and dangers. So I think that that's what's going on also. What I think is scary is that there's been a rise in um pediatric and adolescent malignance. You know, one of the last times I was down at Moffitt, my surgeon asked me to come out and speak to a family because there was a 13-year-old who was the same case as me, presented stage three. It was in her inguinal pelvic um lymph nodes. And he just wanted me to kind of talk her parents down because they were frightened. And he said he'd seen a like a dramatic spike in those cases. And so I think now we do know that you know the amount of sunburns you've had at an at a younger age increased the likelihood of you developing melanoma. So I think there's there's a lot more education, but there's still more work to be done.

SPEAKER_01 18:29

There is because it's this whole new area that it used to be grouped into pediatric, as you were mentioning, is birth to 21. And children can be born with it, which is rare, but it can happen. Two-year-olds can get it. But again, it's that 13 to 29 age group, which you know from working with us and what you're saying at Moffitt is so important. And and when Claire was diagnosed, her oncologist at Johns Hopkins had said, I'd like to say it's rare, but she's the third girl I've seen in a month, all stage three, all with the lower extremity. And that's where I thought, wait, what is going on? Like what the hell is happening here? That even if you take precautions, you know, this can happen. And part of the challenge, which is as you know, working with us is that pushback from the medical community, because like you, you know, they kept pushing us, saying, Oh, it's not, it's not, kids don't get it, we'll get you anyway. Young, you're healthy, this shouldn't be. Right. And instead, if they know that was our whole thing. It's like, wait, if kids can get it, why why weren't they chop chop? Get them in, let's get it done with, right? That is just overwhelming to me. But it it is something the conversation now is starting to change, if I understand, which I'm thrilled about, to look at adolescents and young adults almost as a separate group in diagnosis, right? Be that AYA population.

SPEAKER_03 19:57

Yeah, and then and there's been targeted outreach, and cancer centers now have AYA programs. So there's a lot of engagement around that community.

SPEAKER_01 20:06

What is the if there was one takeaway that you want, if we have a young person of color listening to this and they're just hesitant to go into the doctor, or even it's hard to get in with a dermatologist, because again, we always want to clarify that the person that saw you on campus is not a dermatologist. They really missed it because they're not trained to find it. So if it's hard to get into a dermatologist, if if you're you're struggling to, you know, just to find a good doctor, these days it's harder and harder. Um, how do you go about protecting yourself and staying on top of it? What do you do?

SPEAKER_03 20:45

Yeah, I think, I mean, it's difficult in the AYA population for a few reasons. Like we are somewhat transient when you're in school, you're back and forth between home and school, you're traveling, you're trying to find your way. And so you're you you're not as diligent about your health care. But we live in a time now where early detection is key, um, in addition to prevention. So if there's something going on, if you feel that you have a spot that's suspicious, go get it checked out. Again, early detection is the difference between not just life and death, but life and other issues, right? Because for me, I developed lymphedema in my leg. I've had three surgeries to try to fix that. I wear a compression stocking every day. And um, you know, melanoma is not just a simple cancer where you have a mole removed. I mean, like, as with Claire, we've lost others as well. Like we know people who did not win, if you want to call it that, here in this disease. And and so if you can get in earlier, get in there. And if you're not getting the answer or response that you feel you should from your physician, go see another one. The health market. It's a marketplace. You're a consumer. So you need to be satisfied with the service that you're getting. And that's that's really what was helped me survive is that I was the squeaky wheel. And I didn't care that, you know, it's Jackie coming again. Jackie's making another appointment. And I joke with my surgeon at Moffitt that I was surprised he didn't block me because before my very first appointment, I emailed him with question after question after question. And I remember at one point he said, Jackie, write down all of your questions. When you come in, we will go through each and every one. And I'll make sure that you have, you know, an answer that satisfies you. And he did. He he took his time, he went through each question, and he didn't talk over me or above me or at me. But you know, we really were like partners in my care. And that made all of the difference.

SPEAKER_01 22:49

Oh, it absolutely does. We had what we call Team Claire, and she had fabulous pediatrician, Jim Frigetta. She had a wonderful oncologist, William Sharfman. We had her her uh therapist for emotional wellness, we had her physical therapist to help her recover from her surgery so she could stay in her sports. We had her learning support because she was, you know, you forget these drugs can actually affect your learning. They do. They affect her memory. And you can't recall algebra formulas to take. I mean, it is a whole life. That's why I say when it's an unexpected life, you're just sailing along. You're 22, you're graduating, world's in front of me, and it's a screeching halt. It is you what I love in the time I've known you is that you not only pivoted and embraced it, but you have really made it your life's calling to share your story so that other people don't go down the path you have. How much does that mean to you to do that? What do you what do you get out of that yourself?

SPEAKER_03 23:55

Makes me a little emotional. Um, well, one of the reasons is I think about folks like Claire who aren't here to tell their story, right? And if she were here, what work would she do? And so um it's not always easy. There are times where I say, I'm not talking about it anymore, I want to move forward, I don't want to think about it. But the minute someone calls me, I'm there because that's it. Like there's so many people that aren't here anymore. And if I can, by sharing my story, if I can help at least one person not go through what I went through, then I'll feel my work is done because it it's definitely not an easy journey.

SPEAKER_01 24:31

No, and and and it's it's it's it's ongoing. It always is. Life is ongoing as it is, but you have all these new joys in your life, you have a successful career and wonderful husband. And Zoe is so darn cute. Oh my gosh. Just you know, I know you're soaking up every moment with her, every second. Yeah, Jackie, thank you so so much for joining me and sharing your story. And uh, I know it's gonna impact others. I absolutely know it.

SPEAKER_03 25:01

Oh, thank you so much.

unknown 25:03

Okay.

SPEAKER_01 25:05

As always, you know. I was going to say, as always, officially here instead of if you want to learn more about Jackie's story and about the impact of melanoma on people of color and just general taking care of yourself, of course, you can go to our website, ClaremarieFoundation.org. The link will be in our notes from this episode. And of course, we want to say a huge word of thanks to our mission partners who make this podcast possible, Castle Biosciences and also Children's Cancer Foundation. We appreciate them so much. And if you missed our last episode, this is the perfect month since it is May, melanoma awareness. Just to uh peek in on it, it is how to be sensationally sun safe with Dr. Marguerite Germain. Uh, wonderful sun tips, things that I'll bet you didn't know about how easy it is to incorporate sun safety into your life so you can have a big, fabulous life, a wonderful summer. Until next time, just soak in life and live life like Claire.

SPEAKER_00 26:41

No antibiotics, no added hormones, no seed oils. Just one ingredient meat. Visit GoodRanchers.com and get$25 off your first order with code Ranch25. That's code Ranch25 for$25 off your first order. GoodRanchers.com, American meat delivered.