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>> Behind every heartbeat

is a story we can learn from.

As we have for over 80 years,

Blue Cross

and Blue Shield companies

are working to use the knowledge

we gain from our members

to better the health of not just

those we insure,

but all Americans.

Some call it responsibility.

We call it a privilege.

"Second Opinion" is funded

by Blue Cross Blue Shield.

>> "Second Opinion" is produced

in conjunction with UR Medicine,

part of University

of Rochester Medical Center,

Rochester, New York.

[ Applause ]

>> Welcome to "Second Opinion."

Each week, we gather a panel

of medical experts

to discuss a real-life case.

I'm your host, Dr. Peter Salgo,

and I want to thank all of you

on our live studio audience

for being here today.

I want to thank you for watching

at home, too.

Now, today our experts

are Radiation Oncologist,

Dr. Yuhchyau Chen,

Primary Care Physician,

Dr. Lou Papa,

and Head and Neck Surgery

and Survivorship Coordinator,

Jo Ann Snyder,

all from the University

of Rochester Medical Center.

And now, meet our special guest,

Lou Iovoli.

Now he's here to share

his personal story.

>> So how do you tell

your four young boys

that you have a disease

which could potentially be

fatal?

We basically sat down with

the kids and said that,

you know, I have just been

diagnosed with something

that is very challenging,

and it's going to take a lot

of work, but we're going to go

through a process and try

and take care of it.

My oldest son at the time,

who was, what, 13, said,

"You're not going to die,

are you?"

And I said, "Austin,

that is not the goal.

The goal is to go through

these treatments and

do exactly what we need to do,

and if everything works the way

that it should,

that's not the end result."

>> I'm so glad you're here.

And also, Dr. Chen,

you're one of the reasons

that he is here.

We don't often do this,

but nice work.

>> Thank you.

>> That's great.

>> Thank you.

>> Lou, when you were 42,

your whole world obviously

changed.

Tell me about that.

>> Yeah.

I mean, I was in good shape.

I was working out every day

and, all of a sudden,

one day, I felt an earache.

It wasn't pain.

It was an ache.

And I had recently started

swimming quite a bit,

and I really didn't have any

experience with what people call

swimmer's ear, so I thought,

"Well, maybe it's just

swimmer's ear," you know,

and then it didn't go away,

and a month went by,

so I figured I should go to

the physician and see what

it is.

>> Lou, he's in your office.

Now, what would be going through

your mind?

What would you do?

>> Well, he's a very healthy

patient, like, your dream

patient -- takes good care

of himself, eats well.

Just as he said, he's swimming.

You would want to make sure

there wasn't any otitis externa,

an infection of the external

ear, and that's pretty obvious.

But something like that could be

a number of different things.

There can be infections in

the throat, infections in

the gum, infections in

the middle ear.

There can be unusual infections

and masses.

There's a number of things

that you can think of

when somebody has symptoms

like that that last for a month.

>> Did they put you on medicine?

Any medications?

>> Yeah.

So the first time I had gone in,

it was a very dry spring,

and they said,

"You know, allergies are

really awkward this year.

They're different.

The patterns are different

in this particular year

because of how dry it's been."

So they took a look and said,

"We really don't see anything

when we look in there,

so maybe there's something going

on with your inner ear,"

and they put me on,

I want to say a very low-level

antibiotic at the time to say,

"Let's see if there's something

going on and come back in two,

three weeks."

>> Did it get better?

>> It didn't,

but it didn't progress.

It was always that same,

very low, dull-level ache,

for lack of a better word.

>> Never affected your hearing?

>> No.

>> Didn't affect your balance?

>> No.

And it came in and out.

It waved in and out.

It wasn't consistent.

It was just, every now and then,

it just wasn't right, you know?

If you know your body

really well,

and you just recognize,

"Something's not right.

There's an ache."

>> And you didn't see

any association with chewing

or swallowing or breathing

or talking?

It was just,

it did what it wanted?

>> It just, every now and then,

I would feel this ache.

>> Are you going to send him

to an ENT, Ear, Nose, Throat?

>> I probably would at this

point, because if you have

symptoms that are going for

a month, you've tried common

things that's not improving,

you haven't really found

any exacerbating factors,

you want to make sure that

there's not something anatomical

that's causing his symptoms,

and the ENT doctor would

have the best way of looking.

He doesn't have any other

risk factors.

He's a healthy gentleman.

You don't smoke, right?

>> No.

>> Not a heavy drinker?

>> No.

>> No unusual exposures at work,

right?

You work mostly

administrative-type jobs?

>> Yeah.

>> So most of those things rule

out things that you're worrying

about.

You know, I basically have

a good feeling at this point.

>> So off you go to the ENT.

>> Yes.

So I see the ENT,

who at the time, actually was

the father of a friend of mine.

So I knew the gentleman,

and he did a scope

after asking a few questions,

and it was really interesting

because you could tell

when he was done, he had

a different look on his face.

I mean, he said,

"You don't feel anything

when you swallow?"

>> That's not a good question.

What did he say he saw?

>> He said --

My first answer to him was,

"Should I?,"

and then he said to me,

"Well, you have a very bulky --"

A word that I don't like

that I tell Dr. Chen

all the time --

"tumor exploding from the base

of your tongue that looks like

a cauliflower."

>> So, "bulky cauliflower

exploding."

>> Yeah.

>> Did you have any questions

before we go on, Lou, or...?

>> Wow.

That's really unusual.

So, I mean, I just said,

he's your dream patient

that, you know, if you're

taking care of somebody,

unless it turns into

a nightmare, somebody who takes

good care of himself has

something like that.

I mean, it raises a concern

for malignancy immediately.

And he's not your typical

patient that you would see

something like this for.

>> So, right away, somebody's

got to be thinking about a plan.

What are you going to do

about this thing?

What did he say?

>> Well, first thing he did

was explain the idea

that I had an ache in my ear

was mostly related to this tumor

was periodically touching

a nerve on and off,

and that's why I had the ache.

So, you know, he said,

"The good news is,

if you're going to find

good news in this,

is that you were attentive

to that ache, because if you had

let it go as just an ache,

you know, this would be even

worse a scenario than it is."

So, you know, that's the one

thing I want to make sure

everybody recognizes.

Sometimes when things

don't feel right,

they don't feel right, go take

care of it and get it looked at.

>> So, cancer?

>> Yes.

>> Squamous cell cancer?

>> Yes.

>> Not a great diagnosis.

>> Stage 4A.

>> Not a great stage.

>> No.

>> And the obvious question is,

did they tell you

this might kill you?

>> No one came right out

and said that.

>> And you wound up

seeing Dr. Chen?

>> I did.

>> Dr. Chen, tell me about this.

You saw him and you heard this

diagnosis.

Now what do you think?

>> So I saw Lou,

and I did the same thing.

I did the scope examination,

and I saw this very bulky tumor,

and I reviewed the pathology,

squamous cell.

I also reviewed the CT scan

report, and it was very,

very extensive.

It was large,

and it also involved

not just one site,

not just in the tongue base.

It actually tracked along

the lateral of the pharyngeal

wall, down to the larynx,

to the epiglottis,

and to the hypopharynx,

which is the pyriform sinus.

>> So at this point,

you've got to pick a therapy,

a treatment.

>> Correct.

>> So what did you do?

>> Well, I think,

you know, tongue-based cancer,

you know, in general,

and the cancer

for localized disease,

there are two ways --

surgery versus radiation,

or chemoradiation.

But in this scenario,

it was so extensive, surgery

wouldn't be a good option.

The surgery would have involved

removal of the tongue,

entire tongue,

and the voice box,

and the other very reasonable

option is radiation treatment.

And so I recommended radiation

and also recommended him

to see a medical oncologist

so we can consider

concurrent chemoradiation

treatment for him.

>> So chemotherapy and

radiation therapy?

Right away, we're hearing

"team."

Is that what you heard?

>> Oh, absolutely.

It was such a multidisciplinary

approach to it.

I mean, there was

a social worker.

There was a speech pathologist.

There was a nutritionist.

There was Dr. Chen.

There was Dr. Pandya.

I mean, I had six people

surrounding me.

>> Jo Ann,

you're a Survivorship Nurse.

>> Yes.

>> When do you enter

into this team?

>> Usually at the beginning.

The definition of a survivor

is someone from the time

of diagnosis through the course

of their life.

That definition has recently

come to be.

So, obviously, survivorship

counseling should start as

the patient enters the system.

>> What do you tell them?

What's your role here?

>> It's to help them,

usually after the physician

goes in to tell them

the diagnosis,

kind of to translate things

into layman's terms,

answer their questions,

provide support.

If they have children,

look to our social worker

or to myself to help

how they can tell the children

that their parent has cancer

and address issues where roles

in the life will be different.

>> This is tricky.

>> It is tricky.

>> And you've got --

Now, suddenly, there's an

army...

>> Oh, yeah.

>> ...all the way around,

of specialists.

Lou, is the PCP part of this

army?

>> Absolutely.

Nowadays, with this team

approach, you really feel like

the patient is kind of cradled

in, and they're taken care of

from beginning to end.

You talked right from

the beginning,

"Did anybody ever say, you know,

you're going to die from this?"

I don't say that anymore

with any patient.

What we say is,

"Let's explore our options.

There's people we can go to

and see what our options are."

Because it varies

from patient to patient.

>> Now, what I hear

when you tell me that you're

going to do chemotherapy

and radiotherapy,

this is debilitating,

if you will.

Makes people weak.

They lose weight, and this is

a head and neck tumor,

as well -- not going

to be able to eat very well.

>> We do make them very sick

during treatment.

We prepare them very carefully.

I asked Lou to first

to get a PEG tube.

It's a percutaneous endoscopic

gastrostomy tube,

so that when he starts having

trouble swallowing

because of radiation sunburn,

he can use the tube to help him

out.

>> Endoscopic gastrostomy tube.

They put a hole

through your abdominal wall.

>> Horrible device.

>> Horrible device.

>> Keeps you alive, but it's

a horrible device.

>> And it's like a chess game.

You knew what was coming

three moves down the way,

knew he was going to have

trouble swallowing

because of what you called

radiotherapy sunburn,

which is, the radiation burns

everything around it --

esophagus, trachea, everything,

right?

>> Mm-hmm.

>> So the only way you're

going to get nutrition

is through that tube.

>> Yep.

>> Still terrible.

>> One of the worst memories

of the whole process.

>> So let's go over some of

the nuts and bolts.

>> Sure.

>> When did you begin your

treatment?

>> We started right away.

I mean, you know,

once the decision was made,

the way that the system works

is you put together a calendar,

and it's like,

"Here's what we're going to do.

On Mondays, you're meeting with

the speech pathologist.

You're going to start

your radiation therapy

on Wednesday.

It's going to be

hyperfractionated, so you're

going to go twice a day.

So you're going to be here

at 8 o'clock, 4 o'clock,

every day, and we're going to do

this for four weeks.

Then we're going to take

a one-week break.

We're going to put you

in the hospital for five days

because the chemo might have

a negative effect on you,

and we want to keep you

under observation,"

and, you know, you just

execute the plan.

And you trust your team.

That's really critical

as a patient.

>> I cheated, and I know

you began treatment

on your birthday.

[ Laughter ]

Heck of a birthday present.

>> You know, I've had

many more since, so I guess

it's a good anniversary day,

right?

>> Right.

>> You're darn right.

Lou, how do you support

a patient --

He's describing, really,

a grueling course.

>> Right.

>> What are you doing

during all of this?

>> You need a lot of

communication with the rest

of the team.

There's going to be weight loss

when you have a PEG tube,

and it's really difficult

to keep the nutrition.

>> PEG tube is that tube

in your stomach?

>> Right.

It's that tube.

My mom had esophageal cancer,

had the same thing,

and that was her primary goal.

She didn't care about anything

else.

She wanted that tube out.

>> Oh.

You have no idea.

>> So they're going to lose

weight.

They're not going to be eating.

There's a lot of things

they're going to miss.

They're going to be sick

from the treatment.

They're going to need

pain management.

They're going to need hydration.

There's going to be a lot

of bumps along the road.

You don't want to paint

an overly rosy picture,

but you want to let them know

it's going to be a fight.

>> You knew what to expect,

but you hadn't gone through it

yet.

>> No, but, you know, there were

people in the survivorship

program who had gone through it.

You know, everybody's cancer

is a little bit different

in the way it's treated,

but some of the process is

similar in that they start

giving you tips.

There's, like, a bond

that happens among patients,

and they're immediately saying,

you know, when they're teaching

you the exercise to stretch your

jaw, and they want you to put

four fingers in your mouth and,

you know, try and spread them

and open up your jaw as much,

trust me, do it because these

muscles are going to hurt

afterwards.

So if you listen, I mean,

for anybody who's out

there watching this show,

and you can try and take those

blinders off for a while and

think about your own scenario

and listen to the advice

of folks that are giving it

to you, especially other

survivors, and the proactive

people, it all comes back

into play later.

It all helps.

>> This story just gets

more amazing by the moment,

but hold on just for a moment.

Everybody stay here because,

in every episode,

"Second Opinion" looks for game

changers -- medical innovations

that are making a difference.

In the area of head and neck

cancer, doctors and health

centers are using 3-D technology

to be as precise as possible

in surgery.

>> Virtual surgical planning

is the latest technology

we have to reconstruct

complex defects of the mandible,

and a 3-D model of the patient

is fabricated by a technician.

Using 3-D imaging, we have

the ability of performing

the entire surgical procedure

virtually before the surgery

is executed.

So without virtual planning,

we were freehanding

the curvature of the bone,

but we had no ability

of reconstructing the patient

into the accuracy that we can

today.

Since we don't have guesswork,

our ability to have

bone-on-bone contact is 100%.

Now the healing process

of a patient has significantly

improved, so the patients can

proceed with other treatments,

if necessary, like chemotherapy

or radiation, without any delays

from surgical execution.

So the green part is the part

of the mandible that's going to

be completely removed during

the surgery, along with

the soft tissues,

and we're going to re-create

the mandible using the straight

bone of the fibula.

It is very hard for the patient

and for anybody to understand

how we can take a piece of bone

from the fibula and create

a new bone, a new mandible,

so when they see it,

you can show them the entire

plan as you are doing it.

So the acceptance is higher.

The understanding is higher.

It's easier for them to undergo

this complex surgery without

the additional stress of,

"How am I going to look

after this?"

>> And we're back with

Lou Iovoli, who has survived

head and neck cancer.

Nasty tumor.

He got radiotherapy

and chemotherapy,

and the tumor shrank.

When did you find out this tumor

was going away?

What was that like?

>> Well, you know, in general,

we don't assess tumor during

treatment.

We want to give him a lot

of support to get through

treatments because he was going

through the radiation sunburn.

We call it mucositis.

He was at risk of weight loss,

dehydration, low blood count

from chemotherapy.

So our goal during treatment was

to get him through treatment,

and then he can recover,

and then when he can start

to eat, we can get the tube out,

and then, usually in

three months after

chemoradiation, we'll get

a scan, and we'll also see

the patient with a scope.

>> Okay, so now it's scan time.

This is it.

>> Yeah.

Because all that other bad stuff

happened already.

>> And what was that like?

>> We literally walked out

of the examining room

down the hallway.

We sat in a hallway where there

were, like, two computers there,

and Dr. Chen showed me

the actual scan and said,

"Look at this."

And I was like, "Okay.

Looks like a bunch of white

and black on a screen."

[ Laughter ]

You know, I mean,

"What am I looking for?"

And she's like, "Nothing.

It's gone."

[ Laughter ]

>> The tumor wasn't there,

right?

It was gone.

Were you ever told you

were cancer-free?

>> No.

Not exactly like that.

Dr. Chen is very careful in

the way that she words things,

and she was,

"This is very optimistic."

You know, "This is --

We don't see anything, which is

a really positive sign."

That's the way she tends to

word things, which is awesome.

>> How long ago was that?

>> That was almost 10 years ago.

>> Ten years ago.

[ Applause ]

Which brings us to survivorship.

>> Correct.

>> He's a survivor.

I know you said survivorship

begins at diagnosis.

We're 10 years down the road.

>> Yes.

>> All the radiation,

all the nausea,

all the vomiting,

all the chemotherapy,

all that stopped.

He's still here.

>> Yes, he is.

>> What does survivorship mean?

>> Survivorship means to live

well for the future.

We actually now do survivorship

visits at the end of treatment,

usually after they go through

recovery, and the nice thing

about a survivorship visit --

it's usually with a nurse

or nurse practitioner --

is we give them a summary of all

the treatment they've had,

and then keeping our

patients informed and involved.

So it has whether they had

surgery, radiation,

or chemotherapy,

if they were in studies,

what were their staging,

who were the people

and their phone numbers

involved in their care?

It's a document that they can

take with them to any new

doctors that they see.

If they're in the electronic

record, we'll upload it there.

We'll give them a copy,

and we send it to other people,

their primary care doctor.

>> That is a beautiful thing.

>> It is a beautiful thing.

>> Because, in the past,

when patient's doctors retire

or they die or they have to move

somewhere else, you didn't have

anything comprehensive like

that.

You very often didn't have any

idea what they were treated

because the patient's not going

to remember their chemotherapy

or how much radiation they got.

That is a beautiful thing.

>> And then there's

a second part to those,

which is a survivorship

care plan, and, essentially,

it's a road map on how to keep

healthy for the future.

So we do talk about general

cancer prevention.

We talk about what surveillance

they need over the next

few months and years,

and then symptoms

to call back for,

and then we go over

their short-term effects

that they're having --

what's bothering them most,

how we can get them back to life

and back to the best function.

Life may be different,

and it often is

with head and neck cancer

because it affects breathing,

eating, speaking, and

appearance, and then we also

go over late effect,

and things to look for,

things that your dentist

needs to be aware of such as

we don't want teeth removed

unless you talk to your

radiation doctor to find out

if you need special

oxygen treatments ahead of time.

So it gives them that

information.

And then the third piece

is letting people know

the resources available

at your cancer center

and also in the community.

>> A couple of very quick

questions.

It's been 10 years.

Is cancer going to come back?

>> It's unlikely,

but we never say never

in medicine.

[ Laughter ]

>> See, I told you.

>> Doctors do that.

>> I told you how she words

things.

>> Are you worried that it's

going to come back?

>> All the time.

>> Yeah.

>> And you know that.

>> Yes.

>> And you help with that, too,

don't you?

>> Right.

Fear of recurrence is very big.

>> And, Lou, you deal with that?

>> Yeah.

And I think she's being way

too modest.

I mean, one of the things that's

really important about this --

I mean, we doctors do a lot.

And you know as well as I do,

Peter, because you're an ICU

doctor, but the nurses really

take care of the patients,

and they're the ones that really

drove that there's a patient

attached to the cancer

and develop this plan, and share

with the primary care doctor,

because, in the past, it would

be kept by the oncologist like

it was some treasure, and not

shared.

>> You are the portal,

if you will.

>> So it's a huge benefit.

>> Now, let me ask this.

How has treatment changed?

It's been 10 years.

How has treatment changed

since Lou got treated?

>> A lot of change has happened,

actually, since then.

When he started treatment,

we started intensity-modulated

radiation treatment,

which was a game changer.

By that time, it wasn't

CAT scan-based.

But, you know, a few years

later, in 2008,

we moved to a new cancer center.

We use CAT scan-based treatment

planning of

intensity-modulated radiation,

which is a 3-D radiation

treatment, and that changed.

The other thing that has changed

is that there's more study

coming out with

the molecular epidemiology,

with the understanding

of certain viruses associated

with the oropharyngeal cancer

that really are game changers,

for sure.

>> How are you doing right now?

>> I'm doing really well.

Yeah.

Yeah, I mean there's things

that happen afterward that,

you know, the group that

supports us creates

the expectation for,

so you learn techniques

to deal with it --

like, swallowing is difficult,

different types of foods that

you learn are more difficult

to manage.

But, other than that, you know,

I mean, life goes on.

>> Early on, you talked about

your children and your son

Austin, and telling them

about what was going on.

Well, your son Austin is here

with us in the studio.

>> Yeah.

>> So he's in medical school

now.

>> He is.

>> So let's talk to him

for a moment.

How you doing?

>> Good.

Good to be here.

>> Do you remember back then

when your dad was so sick?

>> I don't remember a whole lot.

It was the summer before

ninth grade at the time.

>> Uh-huh.

And what does stick out in your

mind?

>> What really stuck out in my

mind was just seeing him home

every day getting treatments.

My mom helped design a hope room

for him, where we reinforced

all the walls with positive

reinforcement, and it was tough

to watch him go through it.

It was tough watching him

lose weight.

I know he hated the feeding

tube.

My mom really shielded us

from the gravity of

the situation, me and my

brothers, and she really wanted

us to just go through with life

as we had been, and...

it was just tough to watch.

>> Well, he's still here.

You're in medical school,

and what particular area

are you studying

in medical school right now?

>> So, right now,

I'm studying for my boards,

but I'm interested

in radiation oncology.

>> All right.

I know a good

radiation oncologist.

[ Laughter ]

That's just great.

I'm so glad everything

is working out for you.

You know, it's been 10 years.

>> Yes.

>> I'm going to be very personal

and very selfish and take

the last 30 seconds and simply

say this is what a doctor

lives for, too.

This is what Lou lives for.

You do.

Nurses, too.

>> Mm-hmm.

>> You're here.

>> Yeah.

>> Your family still has you.

I don't even have words to tell

you how happy that makes me.

I think that's just wonderful.

[ Applause ]

Lou, I want to thank you for

sharing your story with us.

It's been amazing.

And, the panel,

I want to thank you

for being here, as well.

To end the show today,

here's Lou's advice to anyone

who may receive an advanced

cancer diagnosis, as he did.

>> So, my advice is,

take a deep breath.

As best you can, stay calm

because you're not going to

change the situation you're in.

It's been identified.

You have it.

So let's figure out what it is.

Stay level-headed.

Don't panic.

And then when it's go time,

my advice to you is make it

go time.

Give it 100%.

Don't woe-is-me, don't let

the disease rule your life.

You rule your life.

It's your decision.

>> Thank you all so much

for being here today

in our studio audience.

It was great.

And I want to thank you at home

for watching.

Remember, you can get more

second opinions and patient

stories at our website

at secondopinion-tv.org.

You can continue this

conversation on Facebook

and Twitter, where we are live

every day with health news.

I'm Dr. Peter Salgo.

I'll see you next time

for another "Second Opinion."

[ Applause ]

>> Behind every heartbeat

is a story we can learn from.

As we have for over 80 years,

Blue Cross

and Blue Shield companies

are working to use the knowledge

we gain from our members

to better the health of not just

those we insure,

but all Americans.

Some call it responsibility.

We call it a privilege.

"Second Opinion" is funded

by Blue Cross Blue Shield.

>> "Second Opinion" is produced

in conjunction with UR Medicine,

part of University

of Rochester Medical Center,

Rochester, New York.

The Description of SECOND OPINION | HEAD AND NECK CANCER | BCBS | Full Episode