An Unexpected Life

Beyond AI / New Tech That Targets Melanoma with Guest Dr. Diane Orlinsky

The Claire Marie Foundation Season 2 Episode 4

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0:00 | 25:27

When it comes to health, it seems everyone is looking for the next best thing!  Some advances can save pain and money. Others may score high on the “hot tech” meter, but fall short in effectiveness.  What works and what doesn’t, when it comes to tech in melanoma diagnosis?  In this episode, Marianne Banister turned to Dermatologist and Medical Advisor to the Claire Marie Foundation, Dr. Diane Orlinsky, M.D., F.A.A.D to help us sort it all out!

 

What You’ll Learn in This Episode

How a new genetic test can determine the aggressiveness of melanoma and if it will spread. 

✅ How a new AI device can help physicians in rural areas pinpoint melanoma risk.

✅ The ineffectiveness of whole body mole mapping and high out-of-pocket costs.
✅ Dermascopy versus new technology. Which is best?

✅ Are genomic home-testing skin strips effective in diagnosing melanoma and skin cancer?

✅ What age should you begin annual skin checks?

✅ How to advocate for yourself with a dermatologist

✅ How to find a gold-standard dermatologist

 

Links

🔶 Decision DX-Melanoma Test  https://www.castlebiosciences.com/melanomatest

🔶 DermaSensor: https://www.dermasensor.com/

🔶 How Dermatologists Use Dermascopy: bit.ly/4dD6VtZ

🔶 DermTech: https://dermtech.com/

🔶 ExoPatch: bit.ly/3RzcnGI

🔶 ChatGPT is Not A Dermatologist: bit.ly/4pwklfT

🔶 How To Find The Best Dermatologist: bit.ly/3Pzccuk

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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SPEAKER_01

Hello, everyone. Wow. Welcome to summer, right? The calendar may not show it, but we have celebrated Memorial Day weekend. So we might as well dive in head first. Thanks for joining us here today. If you follow us here at the Claire Marie Foundation, you know that Sunsafe Practices are our jam. We keep it right forefront. We want you to enjoy a full life, but do it safely. Yes, Pf50, UPF 50, everything you need to keep your lovely skin sun safe and well at the end of the day, lovely. That's the idea. Part of that is to find your team, your dermatologist. That is the person that is essential to your skin health. And the person who will help you avoid any bumps that could lead to an unexpected life. It was something that the medical profession was not very aware of. And since then, we found our mission. We decided to dive into all the other little unknown factors of life that can contribute to melanoma, particularly in adolescents and young adults, where it's said to be at epidemic proportions these days. Our focus is preventing melanoma and also raising awareness that it exists in young people and all the ways to take care of it. And key to our outreach, of course, is our CMF medical advisory team. We've made this wonderful collection of esteemed dermatologists, oncologists, medical professionals, all there to keep us trending on the latest tools in prevention and also technology, because we want to share that with you so you can take action to stay sun safe. And with this surge in AI, like everything else in life, it is finding its way into technology in treating melanoma and perhaps even helping to prevent it. So it's time to dive in. We want to find out what works out there, what doesn't, what's new, what's happening, and the best practices you can brand bring into your life. So joining me today is one of our wonderful medical advisors, Dr. Diane Orlinski. Thank you so much, Dr. Orlinsky, for joining us today. Truly my pleasure. It's been a while and it's wonderful to see your shining face. Um, just for our listeners, we don't have time to dive into all of your background, but just to keep it brief, you are a board-certified dermatologist, assistant professor of internal medicine at Johns Hopkins University School of Medicine, and also a fellow of the American Academy of Dermatology, which is why we love having you advise us because I always call you and the rest of the team and say, what about this? Is it good? Is it new? Does it make sense? Should we share it or not? Um, before we get to some of the specifics, you know, I just overall, I think so many people think of sunscreen one and done. And the one thing is you've always been a big part of our programs in promoting screenings, but I want people to really understand why, above everything else, they still need to see a dermatologist. What do they get from you that they can't do on their own?

SPEAKER_00

Well, skin cancer is the most common cancer in the United States, and especially amongst young people. Um, so by seeing a dermatologist, we can find the skin cancers early because if they're found early, they are for the most part highly treatable. But if they're found late, that's when they can become life-threatening.

SPEAKER_01

And part of the key is people have to understand the right person to go to. I mean, one thing that breaks my heart is working with so many young parents and young people. I I've gotten the call, I know you've run into this, where a mom or a dad will reach out and say, I took my child to the pediatrician. And and they looked at and they said it was fine, and it wasn't. And not demeaning pediatricians, but I would say it's like um going to your dentist for a head cold. Right. You don't want me reading your EKG. Well, keep keep it in the lane, keep it in the right lane. Right. Yeah. All right. So in some cases, you can't completely prevent melanoma. It's right. It will happen because, again, there's a multitude of reasons. There's a flares, it was a combo of genetics, most likely, and hormonal influences, even with all the sunscreen. But there's some new technologies out there, and I just want to get your input on it because there's so much coming at us that I think it's really great to know what's available, what you should seek out, just to empower people, you know. So can I add something?

SPEAKER_00

Yes, please. So I do think it's extremely important to get regular skin checks, but not from someone who's not used to doing good exams. And by a good exam, I mean a board-certified dermatologist, um, also someone who uses dermoscopy. Dermoscopy is a handheld instrument where it's almost like a cross between the naked eye and looking under the microscope. So when we use this little instrument, we can really see patterns that give us information about the mole and tell us should this be biopsied, should it not, is it good, or maybe it is suspicious.

SPEAKER_01

When a person calls, should I mean again, I'm I tell people to be a little pushy and aggressive. Sure. So absolutely. Is it so if someone calls in and you don't know if a dermatologist, if they're medical oriented or cosmetically oriented, or which or both, do you say, do you use dermoscopy? Do you question?

SPEAKER_00

That's crucial. Crucial. You know, it I mean, in a dating scene, what's like one of the number one questions that you would ask someone who, you know, you are planning on going on a date. You take that number one question and it becomes do you use the dermoscope?

SPEAKER_01

So it is. So so again, very important for yourself, because I think people get very shy because you guys have the degree on the wall. Right. You're going in there with a problem. It's hard to get the appointment. You don't want to tick off the doctor, but you can advocate for yourself then as a patient.

SPEAKER_00

Yes. And you want to be naked during the exam. If a doctor does not have you take all your clothes off and is standing across the room and says, twirl around, let me look at you. That's not a good full skin exam. You also want to have communication with the doctor. So you want a doctor who you can ask questions to and not someone who just shuts you off after two minutes. That's important.

SPEAKER_01

Don't let them give you that 10-minute rushing you out once you get in the door. Um, and also we can mention that melanoma and skin cancers don't always pop up where it's evident. There's other parts of the body that's why you have to be naked. Yeah.

unknown

Yeah.

SPEAKER_01

Where the sun don't shine. Exactly. Yes. Exactly. It does happen. Okay. Well, that's see, that's the stuff we need to know and that we need to share. Okay. So let's say if something pops up, like for instance, and again, Claire was diagnosed 15 years ago. Technology's come so far, and everything is so different. When they found her melanoma on her ankle, then they went to what is the sentinel node, uh, which determines if it's gone on into lymph nodes further in the body. That was a very painful procedure she had to go through. I had to promise her a new iPhone to get her to do it. It was, it was really bad.

SPEAKER_00

Yeah.

SPEAKER_01

But now there is this new technology that if it was available, we wouldn't have necessarily needed to use that. And you've shared with us about this. It's from Castle Biosciences. Can you explain this to us?

SPEAKER_00

Yes. In a nutshell, it's a genomic test that's performed after melanoma is diagnosed to help predict the aggressiveness of a tumor and also the risk of spread. So when we have somebody who's diagnosed with a melanoma and now also a squamous cell uh carcinoma, which is another type of skin cancer, um, the Castle Bioscientist sends us different numbers with percentages and statistics telling us in five years, what is the likelihood that this particular melanoma will spread and their survival rate?

SPEAKER_01

So it's it's decision DX melanoma, is what it's called, if you ask your doctor about it. So, with that, does that mean it determines how, like we would come back for skin checks every so often? Does it determine how often a patient would see their dermatologist?

SPEAKER_00

No, it doesn't. It really looks at the, you know, the genetic makeup of the tumor. Is it aggressive? Is it not aggressive? So I look at it as another tool in my toolbox. I mean, I don't know the exact percentage of every number that comes out from the DX melanoma because sometimes, you know, AI or other any tests are not correct. There's a lot of false positives, a lot of false negatives. So again, it's part of my toolbox. And I'm not going to say I take it with a grain of salt, but I just do let the patient know, okay, this is a very good prognostic sign that we're seeing here. And let's not panic with this diagnosis, but let's incorporate this into how we're going to look at it for the future.

SPEAKER_01

That's that's huge because again, it's not an invasive procedure that needs to be done. Right.

SPEAKER_00

And I believe that they're also doing some experimental tests now for other skin diseases, and they're going to, you know, um look at how certain medications react with different diseases based on the genomic makeup of the person or the tumor or the disease.

SPEAKER_01

Because they're all, again, the science has come so far, and it starts with the diagnosis and a dermatologist, and then it goes into the hands of an oncologist. Right. Both parties have to work together, but it's a matter of finding out as much as you can. And this is such a remarkable. I mean, I just think about if we could have avoided that, it it's been such a gift. And I'm so glad so many other people have this available now. Insurance is a whole other conversation and a whole other battle out there these days. Okay, what about? Um, and I heard about this about a year or so ago, and I think about not so much dermatologists, but like I grew up in rural Kansas, for instance. There's not germs around there, there's not any of that, right? So there's these AI-powered handheld scanners like derma sensor. And if I understand it right and correct me if I'm not, that it allows a general practitioner to look at it and say, you might need to drive three hours to Kansas City to go see a derm. Like is that right? Yes.

SPEAKER_00

Actually, I was speaking with my daughter who's in medical school, and I was asking her about all these AI um entities because I was not familiar with all of them. And she's like, Oh, yeah, mom, we know all about that. So it's really good. You're right, for the middle of the country where there aren't dermatologists on every corner, like New York City. And so it gives people sort of, you know, the push. Okay, this is suspicious. You do need to see a dermatologist.

SPEAKER_01

Which is huge because it is oftentimes uh again, a wait to get into any dermatologist can take three months on average if you're a new patient or longer. Sometimes longer, right? Yeah. So this is at least a first line of defense.

SPEAKER_00

Okay. It's not a replacement for dermatologists. Um, and also people have to know that there can be false positives and false negatives in this. But again, another tool, but especially for someone who doesn't have access to dermatologists, you know, around the corner.

SPEAKER_01

Okay. Now I know when a patient sees you, close off, you've got your scope, you're checking everything. The other option I hear a lot about is body mapping. How does that compare to what you do and when would someone use it or not?

SPEAKER_00

Okay. So I look at that kind of like as a Google map or GPS of the skin. Um, and it sounds amazing. And I have patients asking us about it all the time. Do you do mole mapping? Do you do mole mapping? Well, we investigated mole mapping and it it could cost us $100,000 to buy the machine that does it to get the very best. And there's a whole protocol that you have to go through with that. The patient has to come to your office to have the mole mapping and then have it looked at every single time they come. So if I have a patient who comes to me and I'm not doing it, but they want the mole mapping, they will need to go to another doctor, but they can't see me also because the mole mapping people say that you have to go to them, if that makes sense.

SPEAKER_01

Okay. So the difference is you're kind of trading in systems. You're trading systems for the yeah.

SPEAKER_00

So they won't be able, I mean, they could pay extra to go and then see another meet doctor like myself. Um, but if they want to use that mold mapping institute every single time that they go see their doctor, they have to go see those people. And actually, it's not always a doctor. Sometimes it's a nurse that's running because I actually have a friend who runs it who is a nurse. You're substituting, you know, my 25 years of experience with a dermoscope for a computer. And again, there can be false positives, there can be false negatives. We have seen in our practice people go to a mole mapping person and being told that a lesion is not a problem. And then the patient kind of had it, you know, they had some intuition and said, I don't know, I think I'm gonna go back to my other doctor. And then we've biopsied it. And guess what? It's a severely typical mole, which can turn into a melanoma. So it's not perfect, and it's expensive, it's not covered by insurance either. Those visits are covered by insurance. Those visits are usually not covered by insurance. Maybe if a doctor writes an appeal upon appeal upon appeal, maybe it might be covered. And yes, you can use your HSA for many of the um visits, but it is not usually covered by insurance. At least that's what my patients have told me.

SPEAKER_01

What if you are again in an area that doesn't have direct access to someone as yourself? Would that be a better than nothing choice?

SPEAKER_00

That well, I would think if you don't have access to dermatologist, you're not gonna have access to mole mapping in the middle anymore because the machine is extremely expensive. I think when we had looked into it, it was like $100,000 or something.

SPEAKER_01

So and again, that all gets passed on to the patient out of necessity.

SPEAKER_00

Yes. Right. Now there may be cheaper options um for sure, but um, you know, it's limited availability. I don't think you can just say, okay, I want to buy a mole mapping machine. Um, and again, insurance coverage varies. Um, but I there aren't that many in the country.

SPEAKER_01

Yeah. Well, and the one thing I have learned and have heard over and over from so many people who had been diagnosed with a melanoma is you want that relationship with the dermatologist. Right. And not a machine. Without a machine, but but the expertise. Yes, and because they also know you and they know your body, and they that mole from three months earlier, six months earlier, and you know, are right on on top of it. And um, it's really essential to build that relationship as you can. And I I always take people over machines personally anytime. So I'm fighting my own instincts against it because I need to be open to it.

SPEAKER_00

We all need to be open with it. It's great that it does detect, you know, the mole mapping machine will detect tiny changes. Yeah. And I'm not saying that I'm perfect because I'm certainly not, I am human, but when I look at a patient, I don't just look at certain moles with the dermoscope, I look at literally every single mole on someone's body because I have been shocked by the tiniest little innocent looking mole to the naked eye, actually is something. In fact, the pathologist said, I don't know how you do this and find these little tiny things because it's ridiculous. But it's because I I'm looking at every mole on the person's body. It might take a long time, but I think it's very important to do that.

SPEAKER_01

Well, and just uh going back to explaining the dermoscopy, if I understand it right, and again, correct me if I'm not, that it allows you because you're trained to look at patterns. So you're looking at the depth of the mole that the human eye can't see, and maybe even a mole mapping can't see because you're going deep and you're interpreting what that means. Yeah, right. Yep. Um, so that takes a lot of practice, a lot of years. Okay. What about? Okay, now they want to make it even easier with tape uh on the on the skin, non-invasing genomic testing tape. Derm Jack has this out. What are your thoughts on that?

SPEAKER_00

We looked at a couple a few years ago. We're like, this is this is interesting. Yeah. I think it makes everything too simplistic. Um, and what happens is it's sort of like a piece of scotch tape that gets put on moles and you get a little piece off of it, and then um it collects you know, genomic analysis without cutting the skin, and it should theoretically be telling you, is this a good mole? Is this not a good mole? Should it be biopsied? But if I have any inkling that something needs a biopsy, I will have that discussion with the patient and not be relying on the piece of tape. That makes sense. Absolutely. And I just think, you know, then what do you do with that information? I mean, our our patients would go home and go, wait, it was a piece of tape that decided if I should have this mole that Dr. Orlinski thought was somewhat suspicious taken off. You know, after 25 years of practice, I do think our eyes are pretty good. Um, and I know genomic analysis is really, you know, the future, but I I just can't rely on that yet. I I you get false positives again and false negatives, and that's scary.

SPEAKER_01

And and that along the line, it's about the same as the echo patch, which has little micro needles. That's it done at home, apparently. Right. Like I'm gonna take this home and trust myself. No, no, I didn't well a lot of the again, tools in the toolbox. Tools in the toolbox, but and again, maybe I'm too much of a worrier going through what we did with Claire, but I also personally, yes, you should look at your own skin and keep an eye if you see anything weird. But there's a difference between seeing a new mold pop up or something started looking different, right? Then trying to decide for yourself if it right is anything. So so many times I think when we say, Oh, check your body out every month, people think that's um self-diagnosis and you can wait unless you have a regular appointment. But if anything changes, listen to that gut, get and let the professionals do their job. Yeah.

SPEAKER_00

Yeah, I mean, there's you know, just like with breast self-breast exams, that's not a substitute for getting a mammogram.

SPEAKER_01

Absolutely, right, right. So at the end of the day, with with all of this out here now, um, it sounds like the the two winners of value that we're talking about is the castle biosciences, yes, number one. Right. And then also the um AI powered hand scanner by Drama Sensor. But again, that's just a pre-check term to you. So you still need to go see the experts. So that's why, again, for everybody, what age should you begin getting a skin screening?

SPEAKER_00

That's variable. It depends if you have a family history of melanoma, um, if you have a typical family atypical mole uh syndrome. If let's say you're a young child who's two years old and all of a sudden you have 25 moles on you, you should start when you're a taut. Um, if you have a family history of melanoma, we really tell people somewhere between nine or 10 years old. But again, that's also depends on the number of moles that you've had uh that you have. Um but I I would say 10 years old is what we mostly preach.

SPEAKER_01

And as far as understanding in young people, um, it there's just A mountain of reasons they're in the sun a lot, yes, autonomous, they're not necessarily putting on their sunscreen like they need to, but that's where relying on the science and the medicine. Just going forward, you know, there's been so much talk out there about the uh sun callus tick talk, and you sunscreen is toxic. And if you tan yourself, then you get a sun callus, which I'm using it because it's not a real word.

SPEAKER_00

I know it's insanity. Insanity. You know, we sunscreen is not dangerous if you're using a mineral-based sunscreen. There is nothing dangerous in it. Um, you know, yes, if you're concerned about some nanoparticles, then use something that doesn't have nanoparticles. Wear clothes that protect you, wear a hat, go sit in the shade. Um, but you know, chemical sunscreens, yes, there we can have that discussion, and there are endocrine disruptors and things that it and chemical sunscreens that can cause allergic reactions, but it's not going to kill you. No, it's going to save you.

SPEAKER_01

The cancer you get from not wearing correct, yes, will kill you. Yeah, yeah.

SPEAKER_00

And we're also we're also hearing that you know, people um who have darker skin should not wear sunscreen, and that's not true. No, I have so many patients of color who have had skin cancers, and unfortunately, usually um these skin cancers are found later in their course, and it's it's very sad.

SPEAKER_01

So the key is do all the right things, add the dermatology to it. AI is not going to save you. You know, been AI. We'll count on you guys so far. So far, we can do that. Um, thank you, Dr. Linsky, so much for taking time so much.

SPEAKER_00

It's always wonderful speaking with you, and we always learn so much from you.

SPEAKER_01

Well, thank you. I just, you know, you guys are are are my melanoma 101 course. So I just like to share it further. Thank you. So um again, that's that does it for us for today. So just this quick reminder listen to Dr. Orlinski before you head out the door, sunscreen, UPF 50, make that appointment with your dermatologist. This needs to inspire you today if you haven't had one. If you don't have a derm, call, set it up, advocate for yourself, ask them if they use dermoscopy, make sure they check you head to toe. It's the only way to be completely thorough. And we have tons of articles in our blog and research and videos on our website, ClaireMarieFoundation.org. There'll be a lot more information in our notes to this podcast as well. And just a quick note of thanks to our sponsors, Castle Biosciences and Children's Cancer Foundation, who make this podcast happen and support our mission. We couldn't do it without you. So again, thank you. Go out and have a wonderful adventure today. Soak up the sunshine safely and live life like Claire. We'll see you next time.