#245 Oral Cancer Awareness Through a Survivor's Lens

In this compelling episode, the Divas sit down with oral cancer survivor Amber Young to explore the realities of oral cancer through the lens of lived experience. Amber shares her personal journey and how it transformed her into a passionate advocate for early detection and awareness. Listeners will gain insight into how dental teams can elevate patient communication, strengthen screening protocols, and ultimately play a life-saving role in early detection.

Resources:

• Saving Face https://savingface.org/
• Oral Cancer Foundation https://oralcancerfoundation.org/
• VELscope - oral cancer screening https://bit.ly/3QFIuUG
• OralID oral cancer screening device  https://bit.ly/4tZSBlz
• ViziLite Pro Oral Lesion Screening System https://shop.brasselerusa.com/Product/PLS1001

                                                 https://www.thecompliancedivas.com

Transcript

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SPEAKER_01 0:00

Welcome to the Compliance Divas podcast. I'm Mary Gavoni along with Leslie Cannum. And in this episode, we have a special guest, Amber Young, who is going to share her oral cancer survivor story with us. As many of our listeners know, April is Oral Cancer Awareness Month. And as dental professionals, we play a critical role in the detection of oral cancers and hopefully early detection of oral cancers. But many dental teams aren't aware of how critical early detection truly is and how to be certain they're properly screening patients. So our guest, Amber, is going to share her story and her experience with oral cancer, which led her to start a very valuable organization called Saving Face. Leslie?

SPEAKER_02 0:49

Oh, thank you, Mary. I wanted to welcome Amber as well. I've met her and she does have a very compelling story. And of course, Saving Face is in a perfectly appropriate name for dentistry and for oral cancer. And let's just hand it on over to Amber. Please, Amber, share your story with our listeners.

SPEAKER_00 1:10

Thank you so much, ladies. Well, it's 2015, and I was that $99 new patient mailer coupon that you send out for your dental practices. I went with my family to the local dentist and they offered a panoramic screening and a Vell Scope oral cancer screening as part of their new patient exam. Both of those rendered something they called a dark spot. I didn't have any kind of pain, any symptoms, any signs. And I was advised by that dental team to go see an oral surgeon to get better imaging. And ironically, I didn't follow up because my insurance didn't was over the state line and wouldn't go with that oral surgeon. And the practice manager called me back to follow up and ask how my follow-up went. And I told her I didn't go. And they weren't gonna allow that. So they made an appointment with a local oral surgeon that would accept my insurance. And I went. And when we got the 3D imaging, that dark spot that they found ended up being a golf ball-sized tumor that was growing inside my jawbone, but it was way tucked in the back of my chin inside the bone, breaking my jaw, but it was pushing the nerve out of the way. So we had no idea it was even there. Fast forward to finding out that we needed to go get it removed. We did the pathology on the mass, and it did come back as one of the rarest cancers in the world. It was called clear cell onogenical carcinoma. And at that time, the doctors told me that there was no treatment plan. Chemo and radiation aren't effective. It's 95% aggressive and killed everybody within five years who historically had it, which was less than 75 people. So it was unknown. It was an unknown cancer, and the doctors didn't even know what to do. So they sent me home, and it took about a month. It was Memorial Day weekend before they called back with their plan, which ended up to be to take the widest margins possible and remove the whole entire mass along with my chin. So they cut me from my ear all the way to my front jawbone and replaced this with titanium. This tissue you see here is my scapula from my back. And I underwent a 22-hour surgery, stayed in the hospital for 10 days, and then started on a about a three-year-long recovery process. All I can say is just wow.

SPEAKER_01 3:54

And I'm so impressed that that office manager was persistent with you. She saved your life. Wow, because you cannot have gone back. Wow. That is so compelling. You've shared a little bit about the statistics for your cancer. Do you have any other statistics that you can share with us about other types of oral cancers?

SPEAKER_00 4:23

I've been doing the abysscacy now for about 10 years, right? Since 2016, which was a year after my surgery. So this year is a decade, and I have learned so much. But this year, the statistics are that oral cancer has risen to a top 10 cancer for men, and it's number 13 for women. So oral cancer historically has always been on the rise. This has not been a cancer that we've actually been able to slow down. We're seeing rise higher and higher with relation to like different things, HPV lifestyle. It's not age demographics any longer. So we really have to start using and having earlier detection to slow down the process and also the damage that it causes to the patient in the end. Right. If it's found earlier, we can save a person's face and possibly save their life and quality of life. But if it persists and we see something at a checkup and say, let's wait six months to a normal follow-up, by then it could have already gone to stage three or stage four, and it's going to be much harder on that patient to endure the treatments.

SPEAKER_01 5:35

Again, wow. And it's heartbreaking to think that we in dentistry see our patients on average about twice a year, maybe more often than they see their physician. And so we have these touch points with these patients where we could be talking about this and advocating for early screening and so forth. And with all the advances in cancer treatments, it's not happening necessarily with oral cancer because it's not being caught early.

SPEAKER_00 6:08

And even if it is being caught early, the standard of care has been more so if you see a lesion or a problem in a patient's mouth, you have a follow-up time period. Like you want it, maybe it was a burn or a surface scratch that could heal itself within two to four weeks. But if you're not seeing that patient again for six months and it didn't clear up, it could have already progressed to much more aggressive cancer or spread further. So really seeing that if you see something, a callback sooner within two to three weeks to ensure that it's cleared up, or oh, we need to do some more detecting, or we need to have you sent off to an oral surgeon to get some better imaging and testing done.

SPEAKER_01 6:51

The phrase, if you see something, say something comes to mind. And as I shared with you before we started recording today, one of the pet peeves that I have of working with dental teams and talking with them when I'm lecturing about, you know, what are you doing for oral cancer screening? And they say, well, you know, Vel Scope or some of the other detection systems, you know, if they're gonna find something and then we send them to the oral surgeon and it's negative, then they're gonna be mad at us because it cost money to get this done. And what are we gonna say to them? I'm like, have a party, it came back negative. I don't, I just don't understand that mentality. Why wouldn't you want to? And if I were a patient and nothing additional other than taking a hold of the tongue with a cotton gauze and pulling it side to side and and looking with the naked eye, if I were that patient that had that happen and then I was diagnosed with an oral cancer, and I went online and did some research and found out, hey, there's all these other tools that might have found this earlier, I'd be pretty upset with my dentist.

SPEAKER_00 8:03

And that's a big question that's that's brewing in the industry right now. Say you've either offered an oral cancer screening and a patient opted out, you have to clearly note that in the charts and possibly even have a signed consent that they opted out to ensure that if something did happen and that patient ended up with an oral cancer of sorts, that you can essentially not have, you know, to worry about litigation or being sued because you have your paperwork and everything in check that the client or patient opted out of that oral cancer screening. And as a patient, a lot of people really combat that oral cancer screening terminology because they think they don't fit the statistics. They weren't a smoker, they weren't a drinker, they didn't have any kinds of signs or symptoms. Well, I didn't have any of that either. And I was silly enough and almost didn't go until that office practice manager came back and said, This is unacceptable, and really made me stop. And I was like, gosh, she's putting a lot of effort into making sure I go get this checked. Well, I should do that. And if I hadn't have done that, it was a it was a millimeter away from entering my bone marrow channel, which I didn't know you had in your jawbone, and I would have been dead within two months, and literally they would have found what killed me in my autopsy because we wouldn't have known. I had no signs or symptoms, there was no pain or anything. So it can affect any person of any age. We've seen it in children, which is horrific, right? So you normally in pediatrics, you don't ever check for that at all during oral cancer screening. So we really do need to start checking. I prefer the use of an ultraviolet light as an additional backup and safety protection for your practice. It also can illuminate under the gums the tissue that you cannot see with just a general white light exam. And that's how mine was detected. So I'm very passionate about that. But it is an added device like the Vell Scope that can really, really add a service to your clients, but also a protection for you and your practice.

SPEAKER_02 10:22

Amber, that is so amazing and compelling, and it's serendipitous that you've got the flyer in the mail and that you act with that flyer. I think about things I get in the mail and how often I just throw things in the trash and you were ready to have your dental treatment and your family see a dentist. And so I've I'm amazed that all of those things fell into place for you. And in general, most dental teams, again, are not particularly in tune with oral cancer screening. And they may have heard of it, but they may not have a device in their office. What are some effective ways to engage dental teams in promoting early oral cancer detection?

SPEAKER_00 11:04

You know, there are lots of different ways. April is oral cancer awareness month, but this is a year-round, lifelong thing, you know. So we get a lot of attention on the subject in the month of April. And then I feel like maybe it takes a back burner as the season goes on. But in a dental practice, this is something that should be daily. It should start with conversations from the time you book the appointment, from the front desk associate, from every step of the practice to ensure that the patient knows that you're offering care for them and you're ensuring the whole health safety of their mouth in general, not just a cavity or something like that. You're the front line in a dental practice. My doctors don't look in my mouth. If I go to my gentle practitioner, they don't check anything there ever, right? So the only people that can get in there and look and really tell me what's going on, whether I have gingivitis, periodontas disease, or any of those things, is my dental practice. And having those conversations, I believe, while someone is chair side, explaining the benefit of what you're doing for that patient, I think could go a long way. We're doing this for the better of your health, to ensure that your gums are intact, to ensure, as you would do as a hygienist or a dentist, to let them know the care you're providing to them. And it's just a simple conversation, I think.

SPEAKER_02 12:29

That's amazing. And one of the things that it kind of gets my goat, I love my dentist, but when I go in every six months to get my teeth cleaned, I have basically the just lower level screening of, you know, the gauze on my tongue, pull my tongue this way, pull my tongue that way, a little peek with the mirror mouth mirror. But I've also seen through my career as a dental professional and continuing education that there's so many different ways and so many devices that are available to do a better job of screening. And actually, when I have an opportunity at a dental meeting or when I have a client who has a valve scope or has some of these other more advanced technologies, I ask them to go ahead and do an oral cancer screening for me because I'm not getting it at home.

SPEAKER_00 13:16

I've seen them done in parks, I've seen them done on the side, all sorts of different places. It's so painless, right? And I really am working hard with Saving Face, and we were trying to help patients and just the general population understand that it's a pain-free exam. You're not mailing off any specimen, you're not gonna have to wait weeks, right? This is something that can be done chair side. There, your clinicians are already in your mouth doing it. You wouldn't even barely know it happened. So it's painless, it's quick. I tell people, ask for it by name. Say, do you have a Vel scope here? Because if a practice doesn't, maybe they get enough people asking, they would be inclined to look at that technology to see if they would have that. Velcope themselves on their website at VelScope.com have a tracker where you can find a practice that has a Vel scope if you feel like you'd have, if you'd like an ultraviolet light screening. Um, I think of it very simply because I'm not clinically trained. If I hurt my rib and I go to the doctor, they're gonna use the device to look inside to see what's wrong with it because they can't see it. And I really feel that it's that simple. You're using a device to illuminate the tissue that you can't see with your naked eye.

SPEAKER_01 14:35

You are so right. And one might almost think that you are a clinician because you've got such a good grasp on this. And of course, the one question I hear a lot when I'm including this in a presentation is well, what's the code to bill for it? And how much can I charge? And how much can I get paid for it? And I literally tell my audiences, I don't care. I think that this should be an integral part of a screening that you do not charge extra for. You're there for a preventive visit with your hygienist. And that should be part of it. If that's state of the art, if you say that you're this state-of-the-art practice, then show me that you are. And then you obviously have to invest in the equipment, but that's part of, I would say, the marketing budget or something that let's not put a financial burden on the patient for that.

SPEAKER_00 15:33

You know, and that's a very, very good point. I hear that all the time. And I've seen practices uh charge a wide array of prices for an oral cancer screening. I mean, to be very honest, a Vell scope is around $2,000. It's it's $2,000, and then you pay for disposables, right? So if you are charging $50 for an oral cancer screening and you do it one time a year annually, it adds maybe two more minutes to your hygiene. You're going to be able to actually profit on the bottom line, depending how many patients you see, up towards to $20,000 to $40,000 a year. If you actually do charge for an oral cancer screening, if insurance will cover it, that's fantastic. It's not the case with every policy. Some states like California cover it, some states don't. If you want to do them for free as a standard of care and excellence for your practice, that's even better. But I I've seen it done in all ways, shapes, fashions, and forms.

SPEAKER_01 16:27

Yeah. And every practice obviously has to incorporate this as it makes the most sense for them. But if you tell them, well, our fee to do this screening test is $50 and they say no, then you're kind of in a pickle because you know that, especially if they do have some risk factors, but even if they don't, that state of the art would be to do that screening. So if they opt out, even if you document the daylights out of their, you know, opting out of that, I I, if it were my practice, I wouldn't feel good about that. So I would rather invest the money in the technology, gift it to all my patients, and get them screened so that we give them a better chance at saving face.

SPEAKER_00 17:09

Yeah, and and that's really what it's about, is that we uh we named it that because uh what you don't really think about in the end is that some of the cancers that are out there, like squama cell carcinoma or things like that, if it's at the base of the tongue, people are losing their whole entire tongues. They're losing pieces of their palates, they're losing their teeth, they're losing their ability to eat, they're losing their ability to talk, ability to work, ability to function. Oral cancer actually has the highest suicide rate of any cancer because it is so afflicting for the patients to go through and so life-changing that people honestly just don't want to deal with it any longer. And that's a really, really hard thing to understand. And the truth is, is I've buried more people than I care to even talk about. You know, we just lost one of the greats, which was Brian Hill, and he was the founder of the Oral Cancer Foundation. And this disease will eradicate and eat your life up if you allow it. And if you find it earlier, the better a chance the patient has, right? So even if you're gonna come back with that false positive, or you're gonna come back and someone's gonna say, I don't know that I want to pay this fee. I promise you now, the being 35 and signing your last will and testament in a parking lot and making videos for your children because you're not gonna be there is not the price you actually do want to pay, right? Which is what they had told me. My my choice was either do the 22-hour surgery or go home at hospice at 35 years old. And that's not a choice that I was ready to prepare for. And I don't think that was a price that I was ready to pay. So my choice was instead of illegal immunotherapy and running to Mexico and trying all the crazy things in the world, I put my trust in those doctors. I put my trust in the science. And I was lucky, it worked out. So, you know, if if someone wants to combat it, that's wonderful. And I understand, but it is a top 10 cancer now. So if it's gonna continue to rise, practices need to start considering how they're going to address this because if it's not slowing down and it's only getting worse, this is going to be in the forefront in 2027, 2030. We're still gonna be having this number on the rise if we don't start detecting earlier.

SPEAKER_02 19:29

Amber, you mentioned Vel Scope, and I was wondering what other technologies you're aware of that can be used to detect oral cancer by dental teams.

SPEAKER_00 19:39

Oh, there's several different things. There are several other ultraviolet lights. There's the oral ID, there's Visa light. These are all fantastic devices. So, you know, every practice may have a different type of ultraviolet light. There's also now, newly to the market, saliva testing that you can do chair side right then and there, and you don't even have to wait on results. The price is a little bit higher, so it's not as conducive right now, but the science is being developed. There are some really cool researches out there now that AI is being able to detect changing in voices for esophageal cancer and head and neck throat cancers, which is really interesting that you can detect that by someone's voice peaking or raising that they have tumor growth pressing on their vocal cords. Um, you know, there's a lot of technology, but the easiest to implement is an ultraviolet light.

SPEAKER_02 20:34

That's amazing. You had mentioned that California does seem to be a little bit more insurance-friendly for oral cancer training. Something else that you may not know, in 2025, we have a designation, a certification of dental assistants that are the dental assistants who are considered RDAEF2s. That means registered dental assistants in expanded functions who are licensed after a certain date. They have now been given the duty allowed by the Dental Board of California where they can perform oral cancer screening. So it will help to expand the reach of a typical dental office if they have an RDAAF, and you know, doctors may say, well, we're too busy, or the hygienist has to be on time for each and every patient, and they don't have time. Well, now this is something that could be passed over to the RDAAF to do the screening. And so I'm really excited to hear that California is more insurance-friendly on that, and that will of course help the bottom line for dental offices. There's so many offices are struggling with you know expenses versus uh what their production is. And so I hear their concern about not taking the extra time to do this type of screening, but I also, from a legal standpoint, understand the standard of care and and where this lies and what kind of litigation could be uh against a dentist that that doesn't perform or Cancer screening as part of their routine exam.

SPEAKER_00 22:03

Yeah, you know, we haven't seen a change in the insurance coverage of this sort of thing. It well, first in dental in decades, as you well know, right? As far as payouts and what insurance will cover and not cover. And technology and science has come leaps and bounds in that time frame. It's it's hard. And I don't know if it will ever be covered by insurance. So the alternative is to find other creative ways. If you cannot include it into your regular fee of service, figuring out if a patient's willing to put it on their care credit if they're using that to pay for it, like they would whitening or another adjunctive kind of service, right? Or maybe run a special at certain times. But it it is one of the biggest pain points.

SPEAKER_01 22:51

Absolutely. And we do have a lot of dental practices now that are billing medical insurance plans for some dental procedures. So that's another option in some states. And I wanted to tag on to what Leslie was saying about the dental assistants. Any dental assistant who is listening, if you are an expanded function assistant, you should check with your state dental practice act to see if it is also a duty that can be delegated to you, because certainly recording the images and those types of things can be made a whole lot more efficient with either a second pair of hands, like a dental assistant or a dental assistant doing it independently of a dentist or a hygienist. So, Amber, thank you so much for all the great information you have shared with us today. We're so thrilled to have you here with us as a survivor. And your story is just so compelling. And I hope that it reaches and touches the hearts of a lot of our listeners to really look at how they can improve and enhance their oral cancer screening and early detection and save lives.

SPEAKER_00 24:03

Oh, I think that's fantastic. I I've always considered myself the product of excellent dentistry, and it's true. And I feel that every patient deserves that opportunity. And I get saddened to know that they may not have received that kind of care because it wasn't standard, and I know that now.

SPEAKER_01 24:24

And you are the beneficiary of that. I'm forever going to have that phrase that that office manager said to you, that's not acceptable. I just love it.

SPEAKER_00 24:34

Yeah, you know, so if you don't have a pushy office manager, maybe you should get one.

SPEAKER_01 24:41

Absolutely. Absolutely. Well, we're gonna bring this to a close. Thank you again, Amber, for all of the great information, being willing to share your story and your experience with our listeners. As the compliance divas, we bring clarity and simplicity to compliance by navigating the regulatory world to keep you on course. If you have any questions, you can submit them to us by email at support at the compliancedivas.com. The resources that we've talked about during this podcast, including information about ultraviolet light tests, we'll include in the show notes on your podcast app. And when you're finished listening, if you wouldn't mind scrolling down to the bottom of your podcast app and leave us a rating or leave us some comments so that we know that you appreciate us bringing this information to you. Thanks for listening. We'll see you next time.