this is connections.

I'm Evan Dawson.

Our connection this hour was made with a surgeon in New Zealand.

Doctor Frank Frizzell is a colorectal surgeon with years of experience.

In February, he told time magazine about a case that stood out among the many he's treated over the years.

Too many to count.

Back in 2014, Frizzell was treating a patient in her late 20s who had been diagnosed with bowel cancer.

As time reports, it was a rare situation given the patient's age.

But what led this particular case to stand out for the doctor was that when the young woman's best friend came to visit her in the hospital, she told Frizzell that she had many of the same symptoms as her friend who had just had surgery.

Turns out that if the friend hadn't mentioned anything, the lesion that her medical team subsequently discovered would have become cancerous, Frizzell told time magazine, quote.

That really brought it home to me, how it's much more common than you think and quote.

And that was in 2014.

Since then, the numbers of young adult diagnoses have increased.

In January of this year, the American Cancer Society released a report detailing how, despite the cancer mortality rate in the US decreasing by 34% from 1991 to the present, the progress is jeopardized by an increase in diagnosis of many types of cancer in younger adults.

Research shows breast cancer is the most common type of early onset cancer, but there's been a surge of cases of colorectal, rectal, pancreatic, and stomach cancers and young adults.

Time reports that today's young adults are about twice as likely to be diagnosed with colon cancer, and four times as likely to be diagnosed with rectal cancer as those born around 1950.

So what is causing this?

Researchers are racing to find the answer.

They're studying environmental factors.

They're looking at how people's microbes homes could be an issue, the effect of fast food genetics, and more.

Maybe a combination of factors.

Data shows that 40 out of every 100 U.S. adults are likely to be diagnosed with cancer sometime in their lifetimes, and with 1 in 17 American women and 1 in 29 American men receiving those diagnoses before they turn 50.

The clock is ticking, so to speak.

As our guest this hour, explain, navigating cancer diagnosis and treatment as a young person has unique challenges.

We talk with them about the state of research and how to support young adults living with the disease.

I'd like to welcome our guests.

Lauren Speicher, founder and executive director of 1330 Cancer Connect.

Welcome back to the program.

Thank you for being here.

Hi, Evan.

It's wonderful to be here, as always.

Tell us once again what 1330 is 1330 cancer connect is a nonprofit that I established.

Oh my gosh, almost 25 years ago after our daughter Melissa died when she was 19 and at 1330, we, have a wide range, a continuum of resources and supports to help our teens and young adults between the ages of 13 and 39 meet the unique challenges that face this group.

Thank you for being here.

We appreciate having you back here.

And next to Lauren is Ashley Chittenden, a survivor of acute myeloid leukemia.

Nurse practitioner in the Pediatric Hematology and Oncology Division at Galveston Children's Hospital and the Wilmot Cancer Institute.

Welcome.

Thank you for being here.

Hi.

Thank you.

And welcome as well to Doctor Jamie Fuller Lagi, who is chief academic Director and associate professor of the Pediatric Hematology Oncology Division at Golisano and assistant director of clinical research at the Vermont Cancer Institute.

Doctor Fleur Lagi, thank you for being with us.

It's great to be back.

let me start with you, doctor.

I mean, I'm looking at the numbers here, and if we only looked at the the cancer mortality rate down 34% over 30 years, you'd go, well, this is great.

We're treating it better, we're doing better.

And with all types of cancer.

And then you look at the rates of diagnosis with young adults, people in their late teens, people in their 20s, people in their 30s who feel invincible.

And you go, what is going on here?

I don't know if there's an easy answer, but what goes to your mind first?

There's been many recent articles about this, and there is no one easy answer.

But a couple things we do know.

One is that our patients who are adolescents and young adults struggle with many phases in life, and adding in a cancer diagnosis is really, really hard.

So one is we are grateful to be able to support them with all the research and the psychosocial supports.

But what you said about survival rates, survival rates have been falling as part of B, survival rates have been going up.

Yeah.

The mortality rate the mortality rate is going down but not for adolescents.

And so one of the really important things is here in Rochester, the cancer center recently became NCI or National Cancer Institute designated.

And why that matters will have more access to clinical trials and more access to research.

One of the main reasons the adolescent and young adult survival rate is not going up is because they don't have enough support to get that cutting edge therapy that is curing those patients and making the difference or the support to go on clinical trials.

So we're grateful to try to change that paradigm here in Rochester.

And listeners, if you've got questions, comments about this, if you know someone in this category of a younger adult who has had cancer, and that's probably probably most of us at some point, I mean, it's true for me.

absolutely.

You know, if you want to call in with questions, comments or share your story as well, you can do that.

connections at six i.org is the email connections at skywalk.

Join the chat on YouTube.

If you're watching on the Sky news YouTube channel, you can call the program toll free.

844295 talk.

It's toll free.

84429582552636.

If you're in Rochester 2639994.

And, there is an event today, but that's coming up this weekend.

the stand up comedy show.

Sometimes you just got to laugh.

I mean, I don't, you know, Lauren, can you.

We have to laugh at this sometimes.

I mean, it's hard to laugh at the subject.

Yeah, it's tough, especially after everything Jamie just said about the young adults that we support.

Actually, this past weekend, where was our two Rochester shows of sometimes you just got to laugh, but we have our third annual show coming up this coming Friday in Syracuse to at the Red House Arts Center.

And yeah, as the title says, sometimes you just got to laugh.

And we have nine survivors, who are laughing at cancer, their own original stand up comedy sets.

It's really funny.

If you missed the Rochester shows, we had almost 600 people attend the shows.

This past weekend.

you have another chance in Syracuse Friday night, and we have a clip of one of those performances.

I don't know, is it Kelly Boehm?

beam.

Bam!

Thank you.

All right, let's listen to Kelly is a breast cancer survivor.

Let's listen to this clip.

Kelly.

People really do comment on the hairstyle that you do.

So my my favorite was, a sermon series that she when the director announced that to me and she goes, wow, look so cool.

So was I think that teaser.

Was like, somebody, you're killing it.

I was like, actually, it's is killing me.

I might I don't don't make me laugh at this.

But Lauren, I guess we have to try to laugh through some of this, right?

you know, you have a choice.

You could laugh or you can wallow.

And kids like Kelly just decide we might as well laugh at it.

And the cool thing about it is everybody who was in the show gets it.

And we watch her audience.

You know, sometimes it's a little uncomfortable.

Hey, you can see I'm saying, am I supposed to laugh at that?

Because that's really horrible.

But it is really funny when you're in the minute.

So we have Todd Youngman, who is one of our local comedians, really to thank for mentoring our kids.

This is our this will be our seventh show coming up, this, this Friday.

And it just keeps getting better.

This year in Rochester, we actually had a mom as well who told the funny side of being a cancer mom.

It's pretty cool.

So that's all coming up Friday.

This Friday at the Red House Arts Center in Syracuse.

We'll have a link to more information on our website if you want to attend.

Kelly.

I mean, that's a I mean, it's uncomfortable, I guess, but I mean, if you can let your guard down and laugh along with them, you know, I think connections listeners remember that when producer Megan Mac was 35, diagnosed with breast cancer back in 2021.

And, that is a shock to everybody's system.

And in about a week, Megan and friends who are also cancer survivors were working on a show.

Still hasn't been released yet.

Should be released in the comedy world about the experience of being dealing with the medical system, the ridiculous things they ask of you, the the wonderful ways of dealing with insurance company.

Every in the room is nodding like, oh, we love insurance companies are so great.

yeah.

I mean, and I found myself as, the whole team at connections as we rooted for Megan through that whole process.

Sometimes the most helpful thing to do, Lauren, was, in fact, it felt strange, but to laugh a little at it.

I mean, we're not laughing at anyone's diagnosis, but laughing at the absurdity of life, the absurdity of the insurance system.

I will say that sometimes the red tape of medicine, you know, it.

I guess it can feel better in the moment there.

So, yeah.

You know, years ago, those of us who are old enough to remember as the elder in this group, the old Art Linkletter show, had a segment and said, kids say the funniest things.

And, boy, our kids are saying the funniest things about cancer.

The most unfunny thing I can think of, though, what, doctor for allergy insurance is pretty fun to deal with, right?

Yeah, yeah.

Sometimes fun.

It's fun in that, we will do anything for any patient.

And so although it can be challenging, I will make phone calls all day long to make sure patients get exactly what they need and deserve.

well, okay.

So there you go.

And that's.

It's a great cause.

It is a great event.

It's really remarkable.

but I want to get our focus on, you know, what we do know and what we're trying to learn about this situation.

Because, as I said, you know, if you're 19 years old, if you're 25 years old, if you're 35, you're thinking about a lot of things in life.

But until you get that shock diagnosis, you're probably not thinking about that.

Actually.

What were how old were you when you were diagnosed?

I was 19 when I was diagnosed as well.

19.

I actually had the same type of cancer as Melissa, which made one.

And I kind of a unique fit.

it is definitely a shock to the system.

I think any cancer diagnosis is a shock to the system.

When you're through a year of college and you're independent and you're out of the house, and all of a sudden you're like, hey, guess who gets to move back in with Mom and Dad?

it's, a whole different experience than somebody who already lives with mom and dad, or maybe somebody who even is married, though I'm sure some of our survivors are, it really takes you back out of this, becoming an adult and almost in, like, a regression phase.

And you watch your friends growing up and doing all these things that you wish that you were doing.

and now you're you're back, and your mom's helping you take a shower, and, you're like, what is going on in my life right now?

This is so unfair.

and it really is a very unique age compared to our pediatric patients or a fully adult patient.

And they have you just have very unique needs that is very different than those other two.

And, you know, just reading about some of your story when you heard about 1330 Cancer Connect, you might have been a little apprehensive about a support group at first.

Why was that?

I think back now I'm dating myself.

But back when I was diagnosed, mental health really wasn't a thing that people talked about.

And I think we have gotten really far in that aspect.

But it was very taboo in a sense, to talk about your mental health.

And so for me, I think the biggest thing was admitting that I needed that.

and eventually I think I was to a point where I was like, well, I gotta do something like, something's got to give here.

and I did feel very alone and very isolated.

and then actually, I was it goes on now, and there was a little pamphlet sitting there one day with it was not 1330 then, but with that on it, and I was like, you know what?

It can't hurt to try.

and then I met all of these wonderful people, and you just you go and you feel normal, like these people understand what it's like.

They know exactly what you're going through.

You don't feel like you have to talk about cancer, like you can talk about just your life, and you can be there with no hair and no one's like, are you a girl or a boy?

I'm not really sure.

because you're bald and you're skinny and you haven't eaten in however long.

but they get your unique experience, and they know what it's like to have been in college and to now be living at home or to have been out working a job, your first job, and then having to take a step back, and you can talk about those things if you want to, but you can just also talk about life.

and I think that's what I loved about it is we could go do things and like, sure, everyone was probably like, what on earth are all these kids doing together?

But, it was fun and like, we had a good time and I didn't feel like I had to protect myself while I was there.

You know how many people we've heard, but the stories like that, because of the work that Lauren has done, it's really, really remarkable.

And, you know, you're 19, you get a diagnosis.

What did you know before your diagnosis about acute myeloid leukemia?

nothing.

I think for me, like I was, I had taken biology in college, but I was only through a year, I just knew cancer, that I was going to die.

Like, in my mind, I was like, cancer bad die.

and so that's kind of where I was.

I think, again, I was in shock.

I really didn't know anything, anything at all about it.

I learned what I found out from the people around me, either in that first year or in the year since, have you spent much time thinking about why someone who's 19 gets diagnosed?

Why is that happening?

more often to young people.

Have you tried to kind of peel that back?

yeah, I would say a lot.

I have thought about it.

again, I think with every cancer, like, we may never know why these things happen.

I do think it's interesting that incidences are increasing, and I know that the research we need to do the research in to figure that out, but in my brain, I think everything happens for a reason.

And again, in my brain I'm like, if I never had cancer, I would never be here.

I would never be doing a job that I love and it would never.

I've met so many wonderful, amazing people along the way and my life would look totally different.

And I hate having had cancer, I hate it, I don't wish upon anyone.

I wouldn't change that in my life because yes, it was terrible.

It's hard to I'm not going to lie.

but again, it brought me my passion and it brought me to amazing people that I never would have met without it.

Well, I mean, that's that's the amazing part of your story, is you get through cancer treatment, which was.

How long was your treatment?

my treatment was nine months, but I was different.

And then I had a bone marrow transplant, so I wasn't necessarily getting chemo the whole nine months.

and then you start thinking about a different career goal, and.

And you went into nursing?

Yeah.

during my treatment, I really felt like my doctors are wonderful.

This is not a knock on doctors, doctor.

Foggy.

but I felt like my nurses and nurse practitioner as mentally kept me in the game, like they were the ones that were there day in and day out.

They weren't that much older than me.

They very much tried to make me like a friend in the sense of like, they're getting married.

They would show me wedding pictures and they would, you know, help me.

Let me help them pick out a dress and let me do all these things.

And they would bring me fun romcoms to watch while I was in the hospital.

And they just kept me on that.

and I was like, man, like, this is special.

Like, this is not this is what I want to do for people.

I originally wanted to be a pharmacist and I was like, yeah, I love you, my clinical pharmacist, but this is not me.

and so I was like, that is my dream is one day I want to do this, I want to give back, and I want to get people through this like they got me.

You know, actually, I've talked to people.

I mean, I'm not going to dwell too much on producer Maggie Mac Story.

She's doing great.

2025 been a long time now since, since her full year treatment.

But there's times where it's like, you've been through it, and the last thing you want to think about is cancer.

You know, you want to mentor, but maybe it's hard to kind of go there for people, for you.

Why did you decide?

You know, I've been through all this, and I can handle a career that takes me right into the thick of it with other people.

That's going to be okay.

Yeah.

So, a lot of a testament.

I bone marrow donor.

I actually got the pleasure of meeting him, and he said, you know, you're one of those people.

You got a second chance at life and do something great with it.

And in my mind, I'm like, what a greater gift than to be able to take care of people that were like me and to be like, I understand what's happening.

I know what this is like, and we're going to get you through this.

I know it, it sucks.

And I know you hate to be nauseous, but we're going to do everything that we can to make it okay.

And you know it.

It may not.

And how we all want it to end, but we can make it the best you possibly can while you're here.

You just killing Lauren next year.

I mean, like, poor.

It's it's, You're very proud of her, aren't you?

I'm glad this isn't on TV.

So?

So nobody could see me crying over here.

You know, a part of, part of our story that she didn't tell you is as she was going through nursing school and battling with some very serious complications from her transplant.

How many people told you, Ashley, you'll never be able to do nursing?

Yeah, I definitely, there was a time where I was completely wheelchair bound.

I was told I may never walk again.

Wow.

let alone move again.

And Lauren definitely saw me in my darkest hour.

for sure.

I again, I think 1330, in a sense saved me in the aftermath because that's another thing people don't realize with cancer is like, right, you're through treatment, but there's your through your treatment, but there's an aftermath of treatment.

Well, and so let me ask you in doctor for like you about that part of it.

So they're they're giving you this treatment and telling you you may not walk.

There may be things you can't do.

My guess is and the doctor flag will jump in in a second here.

My guess is they're trying to be realistic about the range of possibilities.

Did you think it was too heavy handed?

Do you think it.

What?

What?

They said you was fair.

I mean, how did it hit you?

So I think it's important to understand the complication.

So I had something called graft versus host disease.

I like to do things extra.

apparently.

And so I had a very rare type of graft versus host disease, that affected my muscles and joints.

Typically you're seeing like skin or gut or long, but I just, you know, had to make it interesting for everybody.

and I think they were very honest with me.

They didn't know what they didn't know, a lot.

They've come a long way and learning about graft versus host disease, but there's still a lot that we don't know about that and how to treat it and what's the best thing to do.

And so I think they were very realistic.

They were like this could stay the same.

This could get better.

This could get way worse.

We don't really know.

And at the time I was kind of like, I, I like the reference of I was like a ten man, because like, really nothing moved.

I couldn't even like, right or anything.

and they put me on the best medicine that they, that they thought was best.

and I did all the physical therapy and then, eventually we came to a day where they're like, we, we need to look further into this.

And I ended up getting, surgery on my hips, and now I'm pretty.

I'd say I'm pretty normal.

Okay.

Doctor Fuller, like you.

How how do you describe the delicate way that you've got to have these conversations?

When your patients want to know, how am I doing?

What's the outlook?

You know, you don't want to hurt someone's hope, but you want to be realistic.

That's got to be very difficult.

It is a very fine line.

And yet it's our job.

And so every day, one of the things my patients know is I will always be honest with them.

There is nothing I'm going to walk out of the room in and say, and the reason that's so important is that we can trust each other, that they know that I have told them all the possibilities and that I'm going to hold their hand and walk it with them and remain hopeful that they are going to have the best possible outcome.

So honesty is so important in that trust with the patient and family.

But then, like Ashley's story, there is nothing better than watching people have cancer just be one part of their life, not their whole life.

And watch them not just live, but thrive.

And that's where 13, 30 and all these other things come in.

You know, we can ring a bell and celebrate when people finish therapy, but it's not over there.

Forever changed.

I always like to say it's like they got new lenses.

You go to the doctor, the eye doctor.

You don't even know how bad your vision was.

You put on the new lenses and everything is clear.

You just see the world different.

And so pulling people together and helping them.

It's not just about the meds.

It's not about making the cells go away.

It's in helping heal their soul, their mind, their body, and helping them monitor for those late effects.

Even if they come out and are doing really well, knowing things may happen.

And so these survivor clinics we've built up and are trying to make a survivorship center of excellence for the whole state here in Rochester, because what is also important for Ashley and so many others that they have a medical home to go to that understands who they are and who they deserve to be, which is the best version of them.

And it's not just about scans in medicine.

It's about their mind.

It's about their body.

It's about their souls and helping them just thrive.

Wow.

Well, I know everyone is excited that here you are in Rochester now with your career.

What do you want to do with your career?

Oh, there's so many things.

This is such a loaded question.

so I took a little bit of a journey in my career.

but really, now that I'm here in Rochester, that is my dream is like, I don't think that we should have to send patients far away to get the best care.

Like, I want them to be able to stay right here in Rochester, be with their family, get state of the art care, and they don't have to go anywhere else.

I want us to be great.

I want us to have a great survivorship clinic.

That's one of the things I've talked to Jamie extensively about is like, this is what we need to do, that they deserve to know that their follow ups are they deserve to know their long term side effects.

And I think I think we're fully capable on from what I have seen thus far, everybody has 100% on the train of like, how can we be great?

we are good, but how can we be great and how can we thrust ourselves forward into excellence at not just greatness?

Well, the right person for this job.

Just a remarkable story, Ashley.

And, before we go to break, I just want to ask you a little bit about now, your mentality, having dealt with cancer to doctor for longest point.

I mean, he your years pass treatment.

But, you know, I mean, you're affected in, in obvious ways and then ways that may not be so obvious or even consistent as in how often you think about it.

I don't know, with your particular case what recurrence rates are.

Everyone I've ever talked to who's been diagnosed at a young age with cancer, thinks about it sometimes, tries nothing but at a times.

So.

Right.

But up there everyone's aware that different cancers at different rates.

I don't know if being diagnosed younger with this means anything different for recurrent.

I mean, so can you tell me a little bit about how you think about that issue?

So I think for me, some days it feels like a whole different life, and some days it feels like you're right back in the thick of it.

and really, the days that you think you're back in the thick of it is like you go to the doctor and they're like, oh, wow, there's a nodule on your thyroid, and you're like, oh, here we go again.

And my husband's always like, every time I go to the doctor with you, it's like doom and gloom.

I'm like, it's going to be fine.

Like it?

I feel like everyone thinks of it differently, but at this point, I'm really just grateful for all the time that I've been given.

And I feel like I'm here for a purpose.

and I think we're all here for a purpose.

Right?

But I think for me, in my particular diagnosis, I'm significantly out from it.

So I'm not as concerned about recurrence.

Now, every time I go to a doctor, they're like, well, your labs are kind of funny.

Let's go to, hematologist.

I'm like, maybe let's not, but, you know, there's always things and there's long term side effects and like, they go, you know, your physicians go over them extensively with you.

And there are a lot, and they're scary.

And they could pop up at any time.

But I think my mentality is you have to live your life.

and when they happen, they happen.

And you'll deal with it.

Then.

I mean, I don't know, doctor, for like, you had a lot of patients they can't all have actually is out looking.

They don't all have to.

Everyone's different.

But that outlook is pretty remarkable.

If someone who's been through so much, it is.

And honestly.

And this is why we're here with Lauren in 1330.

This is our goal, though, for every patient, right?

That it becomes something that changes them and they can see it as a gift.

And that is how we need to support them as a human throughout the whole journey.

Right?

Because it's a whole cancer experience.

It is truly a journey, and we need to be with them in every step of the way so that every patient comes out with that same outlook and, well, everybody doesn't get the same outcome.

Those who survive, they thrive.

And we're we're going to make sure they do.

I mean, you know, I'm thinking about the way that, some people might hear what Doctor Flag is saying and going, you know, that's a little too woo for me.

That's, you know, like cancer is not a gift.

But, but I also understand what you're saying because I think that it would not be helpful to tell somebody, well, someday you're never going to even think about, you know, you'll forget you ever had.

And you, you won't like.

That's just not realistic, right?

I mean, it's just not realistic.

You got to be realistic.

But the thing is, is that through a journey, when you tell somebody they have cancer, it is a bond like you cannot put into words.

Right?

You've changed everything about their life.

And so one unique thing about why I made that comment of what we hope for is the number of hours we spend meeting people's true self, seeing them at their worst and seeing them at these very challenging times, and being able to learn who they are, who they want to be and who they want to be after this experience.

So we get the total gift of truly getting to know patients and families.

And that is the gift I receive every day in my job.

If you need to get in touch, if you know someone who needs to get in touch with Lauren and 1330 Cancer Connect, how do people find you?

1330 talk is the easiest way.

call us any time.

(585) 563-6221 send up a smoke signal and I'll see it.

Yeah.

Come and see us at the center.

She actually will.

Lauren sees everything.

It's amazing.

there's so many amazing stories, and I'd.

I don't use the word amazing a lot.

I mean, that's like my try to pick words pretty carefully, but I am amazed meeting the people who have, met Lauren and been influenced by 1330.

And Ashley story is one of many.

So thank you and we'll put it in our show notes.

1330 it's the number 13 in the the word 30, 1330 or on the other side of this break, I'm going to answer a couple of listener questions that have come in.

about that.

I see an email, about just ideas on why cancer rates may be higher than they used to be among young people.

There are questions about, are we just diagnosing better?

there are questions about, different factors and technology and I'm looking at my cell phone, Erez, asking me, is that the cell phone?

I mean, we'll talk about it.

We'll talk about anything you want to talk about as we try to understand this very kind of, mixed cancer picture.

There's some things to be encouraged about in this country over the last 30 years.

Mortality rates after cancer diagnosis are down, survival rates are up.

But the rates of diagnosis among young people, especially under 30, are significantly higher than they used to be.

And that is not something we want to see continue.

So mixed picture, and we'll come right back and answer some of your questions on connections.

I'm Evan Dawson Tuesday and the next connections in our first hour remembering Pope Francis, his legacy and his reputation, his reputation is as a more progressive pope.

Was that the reality?

We'll talk about it in our second hour.

We're talking about a film at the Rochester International Film Festival about a group of Mohawk Indians and their traditional way of life.

Talk with you Tuesday.

Support for your public radio station comes from our members and from Bob Johnson, Auto Group.

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This is connections.

You've been back here for one week.

I just found out.

Is that right?

Yeah.

And here you are on your local NPR.

We didn't waste any time telling your story.

They're very you're very proud of her.

She was at the top of my list to to be with you today.

And I'm a doer.

So, you know, I gotta be busy talking to actually Chittenden, who is a survivor of acute myeloid leukemia and a nurse practitioner in the Pediatric and Hematology Oncology division at Golisano Children's Hospital and the Wilmot Cancer Institute, and working with doctor Jamie Flair.

Lockey, who is the chief academic director and associate professor of Pediatric Hematology and Oncology division at Golisano Children's Hospital, and assistant director of clinical research at the Wilmot Cancer Institute.

Lawrence Piker is here, the founder and executive director of 1330 Cancer Connect.

And so I've got a couple of questions about whether it's the cell phones.

And so, I told Doctor Fuller, I am not going to have you figure out every perfect thing about this person's cancer was caused exactly by this, this person's 18 years old.

This person is 25.

This is a 32 year old person with, you know, non nonsmoking lung cancer, which is a story that I knew in my own life.

I you can't I'm not going to put that much pressure on you.

But in general when people say is it the phones, is it the tech?

We're all on screens all the time.

What do we know?

It's great questions.

One is it's not just any one thing.

Although I think for our teens and young people, we should probably say it might be so they'll they'll put them down for once.

but no.

And in fact, the more we learn in general, if you're diagnosed with a cancer less than 18, it is unlikely to be any environmental effect.

You just haven't been around long enough to have enough exposure time to be any one thing.

So we always have families.

I reassure them it's not because you microwaved your kids food in plastic.

It's not because and it's not.

But what we are learning is that the world today, needs to be a little healthier.

From stress to gut microbiome that's come out to a healthy lifestyle.

It's not any one thing.

It's not weight.

It's not screen time, it's not sugar.

But you know, we are not a healthy population eating unprocessed food and living our days without stress.

And so we do know that that affects the DNA expression and what that means.

It's not just the genes or genetics you're born with.

It's how the environment around you and in your body changes what those genes express.

And so that is something we're learning more about.

Some reasons the rates are going up, as people mentioned, is better screening, which is awesome.

That's what we want.

We want to be able to know earlier because that's how you help cure more people.

So when rates go up at younger age because of screening, that means we hit the mark.

But in general, as rates have gone up for certain things, we really need to as a whole look at our lifestyle.

But that is every single part in not any one.

So let me hit this in a couple different ways here.

When you talk about, better screening, better diagnoses, hypothetically, let's say you were talking to a 45 year old male who hadn't yet had a colonoscopy.

Let's just say that because that's me.

I like your hypothetical.

Yeah.

You used to be 50 right.

For come on Oscar is 45 I mean that's what I'm reading here.

So the really important thing and you just hit it for the your hypothetical human is they should go get it and not hypothetically they should go get their colonoscopy.

So why this matters.

Things like early detection.

That's why mammograms are now essentially yearly.

And we've really upped the screening.

You can find these little spots.

You can sometimes even just cut them out.

And people's need for treatment goes down and cure rates go up.

And that's why this hypothetical human needs to go get their colonoscopy along with everybody else.

But that's the point.

Sometimes the screening leads to early detection.

You can actually fix the problem and so therefore the cure rates for those cancers go up.

Now for pediatrics.

That's not usually the case.

There's no screening that we do for pediatric cancers in general.

this is more of the adult onset version, specifically colon and breast cancer that are the two that we screen for the most.

Yeah.

So I'm looking at some of those numbers and I'm thinking, well, that doesn't account for people under the age of 30 because you're not screening.

Right?

I mean, so it's not we're not I don't think we're seeing higher cancer rates among teens and 20 somethings just because we screen better.

That's right.

So what's going on?

I mean that's the lifestyle and other things that we've seen.

So it's a combination effect.

We are really seeing a similar pediatric cancer rate overall, but we are seeing people develop cancer younger.

The other interesting premise in life is as people live longer and through different things, then they're surviving.

and that's a good thing.

But then our growing and aging population, the incidence as a whole is going up.

And so that the survival rates have to be better because at least the screenings that we're talking about, the early detection will help the survival.

That's right.

That's right.

Okay.

You want to jump in here?

Yeah.

I just want to say, add to something Jamie said about the importance of early diagnosis.

One of the things that we hear very often with our kids, in fact, one of our, our funniest comedians this past weekend talked about it a lot of the early warning signs of cancer in our teens and young adults get dismissed as growing pains.

Sports injuries.

The young man I'm talking about, his name was Steve, who was in our show this weekend.

He was a senior in college, went to health services and went to his his primary, his primary provider, who said, you know, I think it's just stress.

I think you just need to do some yoga because, hey, now I know college is stressful.

And his cancer went undiagnosed, probably longer than it should have.

So one of the things we're doing at 1330, in addition to the peer programs that we provide for our teens and young adults, we have a very strong emphasis on provider education to help primary care providers who who maybe don't see cancer nearly as much as oncologists like Jamie.

But to just be aware of some of those early warning signs and to be educated about some of the very, different and challenging experiences that our kids go through.

So it's a there's it's a multilayered issue that could be addressed, you know, and college kids do face a lot of stress.

So I mean, I, I wasn't in the room for that conversation.

That's hard to hear that that's hard to get a cancer diagnosis after you've been to a doctor and they're saying, I think you just deal with stress, but you have a hard job, doctor for like you and your colleagues, you know, across medical, that's not easy when you when you have such an unusual case, when you're 18, 19, 20, it's not.

So I mean, it's not supposed to be cancer.

Yep.

Most people don't have cancer.

And there are many amazing physicians who it took them 3 or 4 times to see a patient before they realized it was cancer, because, again, most patients with those similar symptoms don't.

When important thing is early recognition and helping our teens and adolescents find a voice.

So this is a time where they often don't go to the doctor for any well, visit.

they're only going to the doctor for different things and really finding their voice to say it's getting worse and coming back.

And that's one thing to remember.

Unfortunately, if somebody has cancer, their symptoms will not improve.

And so in general, it's listening to their body and helping them speak up and come back and come back and come back even when needed, because they are that patient.

That's a very, very rare thing.

But they're the one whose back pain is cancer.

And so they need further workup.

Yeah.

And I should probably say that we should have a lot of gratitude that early detection is possible, that the that chemo exists.

I mean, chemo was terrible.

Chemo was so hard.

Having watched people you love go through it actually would understand it.

But at the same time, you know, decades ago, centuries ago, people would have loved the opportunity.

So the idea of a colonoscopy is not fun.

We should have gratitude that exists.

Take it.

I'm going to take it.

I'm going to frameshift.

That doctor for log is getting me to think different about everything.

let me read a couple more of your notes here.

This is from Kristen, by the way.

Listeners, I hope we covered in general the questions about cell phone and tech.

I mean, there's probably not gonna be one single easy culprit that answers everything.

you know, more research is better, but, you know, I don't want to oversell or understate either.

So, this is Kristen who says I've learned a lot about the microbiome lately.

I truly think it's our best way to stay away from most health issues.

Our immune system is greatly supported by our microbiome, and we need to take care of it.

Overuse of antibiotics and garbage, food and lack of food diversity combined with sedentary lifestyles have to be at play in this epidemic.

I recently became more aware of the abominable business practices at companies like, well, I'm I'll just read it, she says.

Johnson and Johnson, I don't know much about it, but she says Johnson, Johnson and their relationship, as well as other companies relationships with the FDA, realizing our best protection is taking care of ourselves and excluding ourselves, from trusting these larger entities to take care of us.

Eat what your body wants.

so there you go.

That comes, from the thoughts of, Kristen, who's listening now, doctor, for logging.

Anything you want to add?

Yes.

So, Chris, great points.

Of course, in our gut microbiome we are learning has so much effect on not just our health in our immune system, but our mental wellness as well.

The one really important thing just to remember for people is, there are many people who unfortunately don't have a great microbiome in their gut, and they also don't get cancer.

So there's so much to it.

And this is where it's way more than just one thing.

We do need to pay attention.

We are learning a lot, but let me tell you, getting a teenager to give you a stool sample is probably one of the harder things on the list.

So we yes, but we also have to study it because it's not just about not just having antibiotics.

People would die without those and didn't have a choice.

Right?

So it's not just about eating these healthier other things.

It's more than that.

It's pretty complex.

So on a clinical trial, we're doing right now, we're getting stool samples actually before, during and after diagnosis to really study what is the effect of chemo, for instance?

Okay, somebody has cancer.

Maybe they eat healthy and were perfect their whole life, but I just wiped out their gut microbiome because I just gave them chemotherapy many things.

So how do we fix that?

So if we know we did it, what do we do with that.

So we have to study it.

It's very much in the growing research phase.

It is only one of many parts.

Many people with a poor microbiome do not get cancer, which is wonderful.

but yes, and we have to study it.

And we are talking about today.

And let me tell you, teenagers in stool just well, it can be a challenging thing, but we do it.

So if we can do that, we can do anything but teenagers and young adults in clinical trials to begin with.

Correct.

our kids have been really underrepresented because it's the kind of not not what they do.

And we have to really encourage them to see how important that kind of research is.

so.

And I'm Jamie's working hard.

It.

Yeah.

So right now, the only way I can get somebody 18 or less access to these cutting edge drugs, we've already proven the only way is on the trial.

So that's why it's open.

That's why it's here.

Because we know that these drugs have less side effects and better cure rates.

But that's why we have to encourage people to see that it's more than just research.

It's just proving a new standard of care.

And we've talked about that on this show before.

But, we are working to overcome barriers for teenagers, like extra visits, extra days, missing school.

It's really hard to miss a college class anymore, for instance, or a day at your first job.

So we have to figure that out.

and in general separate note, but related to cancer treatment, if you can get in a clinical trial, anything you want to tell people about the idea of clinical trials.

Yes.

So one of the reasons we're so excited to be an NCI designated cancer center is our access to more cutting edge clinical trials here in ballpark clinical trials, take the last 5 to 10 years of data and try to cure patients.

Quote better either less toxicity or higher cure rates.

So it's all the best in the brightest in the field.

Come together and make a new what's called protocol.

But it's like a cookbook for cooking a new recipe that has a better outcome with less side effects.

Every single time.

So it's access to cutting edge therapy.

It's not for everybody.

but the trials are here for the patients.

And our goal here is to have the best possible chance at cure available for every human in Rochester.

Well, I I'm going to get back to your feedback in just a second.

and I just want to say, Kelly Baim sent a note.

We played the clip earlier, and I want to say to Kelly, that's the first time I've heard your comedy.

I it was really good in that 26 seconds.

I want to hear more.

and you can, meet people like Kelly this coming Friday.

They've got one more event.

Sometimes you just got to laugh.

And yes, it is a show laughing about everything related to cancer diagnosis.

It's this Friday at the Red House Arts Center in Syracuse.

We'll have a link to more information on our website.

They'd love to see you there.

Kelly sends this.

She says, just want to say thank you for bringing attention to the important topic of the unique challenges that air is face.

1330 has given me a positive space to form influential connections with peers who understand and authentic support and opportunities to try new things like comedy and so much laughter.

and, so I encourage any ages in need of any kind of support.

Check out this wonderful organization.

It's truly a special place.

Thank you all for talking about these difficult issues.

Big thank you to actually for sharing her story and her heart.

That is from Kelly.

It's good stuff.

It's so sweet.

and I didn't I didn't ask Kelly to do that.

So that's that's pretty awesome.

Thank you.

Kelly, if you're here air is by the way, adolescents and young adults, teenagers.

There you go.

I'm getting lots of advice on colonoscopies.

I got it, I got it all right.

To all listening.

Who are of age?

If you have not had your colonoscopy, go get one.

That's our public service announcement for the day.

I thought the advice was 46, which I'll be soon.

If your doctor told you you needed one regardless of your age, because everybody's a little different.

Go get it, please.

We care about you for all over me.

You know?

I mean, again, I'm switching to a place of gratitude for for all of this.

Okay.

had a question from, I think from Kevin.

just asking some of the environmental things that we've talked about.

He said that your guest talked about, I think, doctor flu allergy sound like what we talk about with Parkinson's disease and obviously very different.

but is there any overlap in thinking that the things in the environment are contributing to an increase in disease prevalence?

It's a great question.

And that's the study.

And so things like socio genomics of how the world around you affects your own DNA.

So we can't change what we're born with.

We are who we are.

But the world around us does change the expression of your DNA.

So the short answer to the question is yes.

The much harder answer is you can take all of us in the same place, in the same family, take twins who were born and grew up together, the even twins with the same DNA.

They're very different outcomes in life.

So it's a very complex thing to understand, especially if you're looking at something like cancer, where the word cancer is meaningless because there are a million types, and you'd have to look in every different type to see what that might be.

So the short answer is yes.

The world around us every day affects our own DNA and how our body expresses it, and we have a lot to learn and I think in the next coming years, as we not that long ago cracked the human genome, we are learning so much every day there'll be things that we can say.

You were at greater risk for colon cancer for you, so you should go get your colonoscopy coming back to it for you.

Yeah.

But the point is, is yes, we'll learn more about the ways somebody at risk based off their DNA and their environment.

and another question on, can you ask if the prevalence of microplastics could be contributing to an increase in cases in young adults?

So microplastics are all the rage.

And the short answer is we have been ingesting them in various forms for years.

It is not brand new.

It is a growing, recognized problem over a lifetime.

you know, people say just storing things in plastics and all the things.

The point is, it's not just microplastics, as I mentioned, this sort of multifactorial.

It's lots of things.

Plastic is not causing cancer.

Plastic is one of the toxic things that many of us are ingesting every day.

So we'll have to learn it is not the sole cause.

if you're a food at home that you're eating right now for lunch is currently in plastic, you are okay, but we have a lot to learn about it.

And again, some things that are convenience in our world today have negative effects in plastics.

Is one of them.

We are certainly we're having more conversations about microplastics.

I feel like we're moving away from them.

Although they are convenient, they're pretty cheap.

Yep.

They're you know, they're probably better for the bottom line for a lot of companies that make them.

So something to think about there.

and then a separate question related to microplastics was, you know, I think people thinking about colon cancer think about microplastics.

Same kind of answer, right, doctor Fuller?

Like it?

Yes.

Again.

That's just one piece.

And the hardest thing is, again, many people are eating the exact same amount or exposed to the same amount of microplastics.

And many, many, many do not develop cancer.

So it is so much more than just that.

Oh look, another email about a colonoscopy for yay!

Preston says cologuard even as a complement option to a colonoscopy.

Yeah, so there are some other methods.

I'm speaking outside of my lane, so I won't compare the two for you.

but there are some simpler tests that include just a stool sample that you don't have to go through the whole process.

They do not visualize the cells inside your intestine, so we'll never replace it, unfortunately, is the short answer.

but there are some other options which are better than nothing.

Preston, I'm going to do it, man.

I appreciate that very much.

A lot of love to Preston and people who are sending really nice notes and very encouraging.

Everybody's very encouraging, which is great.

before we go, let me also ask the doctor a little bit about the role of AI and detection.

I had a chance to attend a conference, on AI in Rochester, and one of the really interesting presentations was using AI to try to recognize cancer at early stages in various ways.

And I keep getting reminded by people in tech, this is the worst this technology will ever be.

At this, it will only get better.

How good is it now and are you optimistic that it will have a role?

I am, you know, whether you like it or not.

AI is changing the world.

Yeah, and it's going to keep changing.

And one of the biggest things is pattern recognition.

And even if you are the smartest human and a really good physician, there are many, many, many thousands of different patterns that mean something different for a disease.

So the point is, is that yes, may an AI algorithm be better at saying what somebody likely has, or predicting.

Yes.

And things like, you know, we have these electronic health records.

So if you use AI as an example for people to understand, they could look at back at ten years, the AI tools can look back at ten years and see bigger trends, subtleties, things that are hard to see even with the human eye, because it's a data pattern and we don't calculate impute data.

We're not computers.

So there are many very good ways in which AI is going to change the world, and it's going to have a huge role in health care and reading images and other things as well.

And our last minute I think about, you know, Lauren and and Lauren's daughter Melissa, you know, lost her a quarter century ago.

It's amazing when you think about that.

The world was very different.

are you amazed to see cancer rates in the 25 years?

Do you have this mission with 1330 and you're doing great work, but the cancer rates among young people have gone up.

Does it has that surprised you?

I think it surprised everybody.

but I'll tell you what I, I guess I'm happiest about, if not not surprised.

25 years ago when I started this work, truly, if there were a smidgen of people who were talking about adolescents and young adults with cancer, the acronym Air really didn't even exist today.

It's really common vernacular amongst folks in health care.

And that's what I'm really thrilled about because today there is an awareness and I'm so grateful for for folks like Jamie who have a passion for the kids that I love.

so that that's what I'm happiest about, that the world is finally getting it.

And 25 years ago, kids like my daughter continued to fall into this gap.

And while our air still do the gaps getting smaller, I like to think that we've that we've helped bridge that gap a little bit.

But I'm so thrilled that adolescent young adults oncology is now really at the forefront.

And I hope that the increasing rates that we're talking about, one, 20 years from now will say doesn't exist.

And that's two, 1330 cancer connect is going to be prepared with programs to take care of that.

Thank you for being here.

Lauren Speicher 13 30.org.

Everyone, to learn more about this remarkable organization.

Ashley Chittenden, good luck to you.

Welcome back to Rochester.

Thank you.

Great having you and Doctor Fuller lagi always great.

Thank you for the expertise from all of us at connections.

Thank you for listening.

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