Gastroesophageal Cancer: Life Beyond Treatment - Healing, Hope & Health

Transcript

• 00:01Great. Good evening, everyone. It's
• 00:02really nice to see you
• 00:03tonight.
• 00:04So, before we get started,
• 00:06I'd love to do a
• 00:07get a quick sense of
• 00:08who is in the room,
• 00:09if you are willing and
• 00:10if you are comfortable. So
• 00:11by a quick show of
• 00:12hands, how many of you
• 00:14are patients?
• 00:18Both.
• 00:19Yep. Wonderful. Thank you.
• 00:21And how many are caregivers,
• 00:23family members, or supporters?
• 00:27How many of you are
• 00:28health care providers?
• 00:30And how many are here
• 00:31from the pharmaceutical or research
• 00:33industry?
• 00:34Great. Thank you. We have
• 00:36representation
• 00:37from everyone.
• 00:38So thank you. It's really
• 00:39meaningful for me, to see
• 00:41all of these groups here
• 00:42together.
• 00:43I think, as
• 00:45Deepika and Raghav said, this
• 00:47is really a shared journey.
• 00:49And I'm honored to be
• 00:50here as the division chief
• 00:52of GI oncology at Yale
• 00:53Cancer Center. And in my
• 00:55role,
• 00:56I spend a lot of
• 00:56time thinking about how we
• 00:58advance treatments
• 01:00and how we improve outcomes.
• 01:02But evenings like this are
• 01:03really a powerful reminder of
• 01:05what truly matters,
• 01:07and it's really the people,
• 01:08all of you who are
• 01:09in the room who are
• 01:10at the center of what
• 01:11matters.
• 01:12And I wanna take a
• 01:13moment to thank doctor Raghav
• 01:14Sundar and doctor Deepak Gakarki
• 01:17and and others certainly for
• 01:18helping to,
• 01:20initiate this and plan this
• 01:22event.
• 01:24So bringing a community
• 01:25like this together takes incredible
• 01:28dedication.
• 01:29It reflects on their deep
• 01:31commitment to patients and families
• 01:33navigating this journey. And while
• 01:35I have not a had
• 01:36a chance to meet all
• 01:37of you personally, I hope
• 01:38to be able to talk
• 01:39with you later.
• 01:40I want you to know
• 01:41that your experiences really shape
• 01:42and inform the work that
• 01:44we do.
• 01:45So survivorship
• 01:46is not just about the
• 01:48end of a treatment or
• 01:49reaching a milestone.
• 01:51It's about the entire experience
• 01:53and the strength that it
• 01:55takes to face that uncertainty,
• 01:57the resilience on difficult days,
• 01:59and the courage to keep
• 02:01moving forward.
• 02:02So I want to acknowledge
• 02:04that this journey is certainly
• 02:05not easy easy.
• 02:07I can certainly imagine that.
• 02:08Gastroesophageal
• 02:09cancers can bring physical and
• 02:11emotional challenges.
• 02:13There are moments that feel
• 02:14overwhelming.
• 02:15But what I've seen something,
• 02:17that's very power powerful is
• 02:19that people find strength they
• 02:21didn't know they had.
• 02:23Families show up for each
• 02:24other in incredible ways,
• 02:26and individuals
• 02:27continue to build meaningful lives
• 02:29even in the face of
• 02:31this uncertainty.
• 02:33So here at Yale, we're
• 02:34deeply committed
• 02:35to really
• 02:37growing and evolving our survivorship
• 02:39program, and I think this
• 02:40is one part of that
• 02:41specifically in GI oncology, and
• 02:43we hope that you can
• 02:44be part of that. We're
• 02:46fortunate to have a wide
• 02:47range of resources that you'll
• 02:48hear about tonight that include
• 02:50nutrition and physical therapy and
• 02:52symptom management and mental health
• 02:54support and integrative medicine
• 02:57and access to trials and
• 02:58new therapies.
• 03:01But just as importantly, we
• 03:02recognize that there's no one
• 03:04size fits all approach. Just
• 03:06as we talk about precision
• 03:07medicine, there really should be
• 03:09precision survivorship.
• 03:11So another quick show of
• 03:12hands. How many of you
• 03:13feel that your needs have
• 03:15changed over the time of
• 03:17your journey?
• 03:20Thanks.
• 03:21So that's exactly why we're
• 03:23focusing on tailoring survivorship care,
• 03:25to meet you where you're
• 03:26at now,
• 03:28not just where you were
• 03:29at diagnosis or where you
• 03:30were during treatment.
• 03:32So to the caregivers,
• 03:33you are a really essential
• 03:35part of this journey. Your
• 03:36presence
• 03:37and support matter more than
• 03:38you probably hear.
• 03:40And to our patients, you
• 03:41are not defined by your
• 03:43diagnosis.
• 03:44So tonight's about community and
• 03:46connection.
• 03:47I encourage you to talk
• 03:47with one another, talk with
• 03:49your neighbor.
• 03:50Please come up and introduce
• 03:51yourself to all of us.
• 03:53Ask questions, share your experience,
• 03:55and more importantly, we want
• 03:56your ideas.
• 03:57So thank you for being
• 03:58here, allowing us to be
• 03:59part of your journey,
• 04:00and it's really a privilege
• 04:02for all of us as
• 04:03medical providers to walk alongside
• 04:05you. We're committed not just
• 04:07to treating your cancer, but
• 04:08to supporting your life beyond
• 04:09it. So thank you so
• 04:10much. I'm excited for tonight.
• 04:21Thanks, doctor Coon. So that
• 04:22really,
• 04:23touching,
• 04:24opening remarks. So I'm hoping
• 04:26for this to be an
• 04:27interactive
• 04:29session and not really have
• 04:31too many didactic
• 04:32talks and things like that.
• 04:34And, would really encourage all
• 04:35of you to reach out
• 04:36to us and,
• 04:37share your experiences, ask questions.
• 04:40More importantly,
• 04:41while we
• 04:43like I said, this is
• 04:44kind of the start of
• 04:45the way we're trying to
• 04:46set up this program. I'm
• 04:47really hoping that some of
• 04:48you will help us walk
• 04:50the next generation of patients
• 04:51that are coming through Yale
• 04:53through this journey. We know
• 04:54how scary some of these
• 04:55things are when you first
• 04:56hear about this diagnosis of
• 04:58cancer, when you first hear
• 04:59about what chemotherapy is and
• 05:01surgery and radiation and all
• 05:03these big scary words and
• 05:05what it means, but also
• 05:06why each part of it
• 05:08actually plays an important role
• 05:10in getting through what is
• 05:11truly devastating cancer, not just
• 05:13for yourself, but for your
• 05:14family and for everything else.
• 05:15And,
• 05:16so for this group here,
• 05:17I'm really hoping that you
• 05:19all can continue to join
• 05:20us and grow this this
• 05:22community that we're growing. The
• 05:23other aspect of this, and
• 05:24some of you have also
• 05:26have experiences, is the
• 05:28rapid change in the way
• 05:30we're treating our patients. Even
• 05:31how some of you who
• 05:33have gone through this cancer
• 05:34journey ten, fifteen years ago
• 05:35and the way we're thinking
• 05:36about it now, our cure
• 05:38rates, our
• 05:39rates of reducing side effects,
• 05:41trying to get things precise,
• 05:43not just trying to hit
• 05:44everyone with the same drugs
• 05:46and the same treatments.
• 05:47That's kind of the biggest
• 05:48advances that we're making, and
• 05:50that's where, again, we want
• 05:52you to be a part
• 05:53of this journey with us.
• 05:54And as we try to
• 05:55advance these different
• 05:57aspects of fighting this really
• 05:58deadly cancer.
• 06:00And while I said I
• 06:01don't have I'm not gonna
• 06:03make this didactic. I do
• 06:04have a few slides to
• 06:05just set
• 06:06just set the stage. But
• 06:07before we start, I just
• 06:08wanted to give a bit
• 06:09of context of the kind
• 06:10of talks we're gonna have.
• 06:12I I will give a
• 06:13little bit of an outline
• 06:14of what
• 06:15this cancer is gonna be
• 06:16like. We do have doctor
• 06:17Boffa here who's gonna talk
• 06:18about the surgical aspects of
• 06:20it. A lot of you
• 06:21here have been operated, have
• 06:22been seen by him. We
• 06:23have doctor Du from radiation
• 06:25oncology who's gonna talk about
• 06:26the radiation side of things.
• 06:28And then
• 06:29probably the most important component
• 06:30of this is everyone else
• 06:32who's helping support. We're gonna
• 06:33have Scott,
• 06:35Capoza and Natalie Smith from
• 06:36physio physical therapy as well
• 06:38as nutrition talking to you
• 06:39about the equally important aspects
• 06:41of staying healthy through this
• 06:43cancer journey.
• 06:44And,
• 06:45again, we're not gonna have
• 06:46lots of slides. Many of
• 06:48us don't even have slides,
• 06:49and we're just gonna have
• 06:50a little bit of a
• 06:50chat and then, talk to
• 06:51you about
• 06:52and then most importantly is
• 06:54we're gonna have two,
• 06:56people talking to you about
• 06:57their own cancer journeys, and
• 06:58they're both very special. We
• 06:59spoke about Deepika who's gone
• 07:01through this journey. We also
• 07:02have doctor Derek Yac who's
• 07:03also a physician and also
• 07:05survived esophageal cancer, and they're
• 07:07gonna give you both their
• 07:08aspects of the story their
• 07:09journey. But, hopefully, in future
• 07:11versions, I'll have some of
• 07:12you come down and have
• 07:13this take this, role as
• 07:15well.
• 07:16Again, it's meant to be
• 07:17direct it's meant to be
• 07:18interactive, so please stop us
• 07:20and ask questions or share
• 07:21your own experiences.
• 07:23With that, I'm gonna get
• 07:24started.
• 07:26So one of the things
• 07:27that
• 07:28I would like to bring,
• 07:30to context is this thing
• 07:32about stomach cancer and esophageal
• 07:34cancer and the diet the
• 07:35dichotomy that sometimes is created.
• 07:37This actually is very different
• 07:39from the view of who
• 07:40you're meeting and what you're
• 07:41meeting them for. For someone
• 07:43like doctor Buffa or doctor
• 07:44Du who think of the
• 07:46specific region that they need
• 07:47to treat from a surgical
• 07:48perspective, radiation perspective, the esophagus
• 07:51and stomach kind of make
• 07:52a big difference on how
• 07:53they're gonna approach it. But
• 07:55for an oncologist my like
• 07:56myself, actually, a lot of
• 07:58esophageal cancers behave like stomach
• 07:59cancers. It depends on the
• 08:00histological subtype. And
• 08:03I think of it more
• 08:04of the the biology of
• 08:05the cancer. And so for
• 08:06today, we're gonna talk about
• 08:07gastric esophageal cancers.
• 08:09The problem with the data
• 08:10that we see here is
• 08:11that even the data is
• 08:12split up between esophageal and
• 08:14stomach cancer. You can see
• 08:15that esophagus over here is
• 08:17number seven and stomachs over
• 08:19here at number five. But
• 08:20if you add gastroesophageal
• 08:22cancers of point six and
• 08:23point four,
• 08:25we have one million people
• 08:26dying from gastroesophageal
• 08:28cancers every year. That's even
• 08:29more than colorectal cancer. That's,
• 08:30like, number two
• 08:32cause of death with upper
• 08:33GI cancer. So this is
• 08:34a really, really serious cancer,
• 08:36and the journey that we're
• 08:37fighting here for all of
• 08:38you is something that there
• 08:40are a lot of problems
• 08:41that we have not really
• 08:42solved. We're getting there, but
• 08:44that's kind of the sets
• 08:45the stage on the tone
• 08:46of what we're dealing with.
• 08:47It is an Asian predominant
• 08:49illness, which means the number
• 08:50of patients being diagnosed with
• 08:51these cancers tend to be
• 08:53heavier in the United States.
• 08:54But I mean, tend to
• 08:55be heavier in Asia, but
• 08:56we still have a lot
• 08:57of people in the United
• 08:58States and other parts of
• 08:59the world who are suffering
• 09:00from this cancer.
• 09:03We also know that with
• 09:05this being a global population,
• 09:06that movement and where you
• 09:08come from may affect the
• 09:09risk of getting these sort
• 09:10of cancers.
• 09:12And most importantly
• 09:13is if you read Google
• 09:15and AI and stuff like
• 09:16that, some people will be
• 09:16like, oh, gastric cancer is
• 09:17coming down. It's not an
• 09:18important cancer. What is true
• 09:20is that, actually, as we
• 09:22have a growing and larger
• 09:24population,
• 09:25the burden of this illness
• 09:26is gonna go up over
• 09:27the next twenty to five
• 09:28thirty years. So we are
• 09:30gonna be dealing with this
• 09:32in a big way. And
• 09:33especially,
• 09:36in in many parts of
• 09:37the world, we're actually looking
• 09:39for these cancers more, and
• 09:40we're picking up more of
• 09:41this stuff.
• 09:43And sorry. I just talk
• 09:45about that. But what is
• 09:46most scary for us is
• 09:48we are seeing a striking
• 09:50number of folks getting diagnosed
• 09:51with this cancer at younger,
• 09:52younger age. Some of you
• 09:54here are in that group.
• 09:55Deepika got her cancer at
• 09:57the age of twenty something.
• 09:58Nonsmoker.
• 09:59Nothing that has a risk
• 10:01factor for this, and we
• 10:02have no way to explain
• 10:04why
• 10:05young people are getting these
• 10:06GI cancers. There's lots of
• 10:07hypothesis floating around there. We
• 10:09at Yale are doing a
• 10:10lot of research trying to
• 10:11figure this out. There's no
• 10:12clear answers, but this is
• 10:13the scariest part about what
• 10:15we are seeing. This is
• 10:16an epidemic in GI cancers
• 10:18of young onset.
• 10:20Here at Yale, we do
• 10:21have a large team with,
• 10:24surgeons, oncologists,
• 10:25radiation,
• 10:26supportive care, palliative care.
• 10:29And so you can see
• 10:30that it takes
• 10:31an army of folks to
• 10:33help fight this cancer. But
• 10:34more importantly, which is not
• 10:35on the slide, is the
• 10:36army of folks at home
• 10:37helping all of us fight
• 10:38this cancer, which is gonna
• 10:40be an important part of
• 10:41this.
• 10:43Another part that's pretty exciting
• 10:45at this point of time
• 10:46is the fact that we
• 10:46are actually helping having more
• 10:49therapeutic options for our patients.
• 10:50A lot of you, we
• 10:51have talked about this concept
• 10:52of precision oncology where we're
• 10:54trying to find the right
• 10:55targets and the right drugs
• 10:56to the right patients. And
• 10:57that's something that we have
• 10:58a lot of focus at
• 10:59here trying to,
• 11:01without going into too much
• 11:02of the semantics is we
• 11:04straightaway profile all the tumors
• 11:06and from the patients that
• 11:07we get, get the right
• 11:08biomarkers to straightaway decide on
• 11:10what is the right treatment
• 11:12strategies that will be best
• 11:13for them.
• 11:16And we do have multiple
• 11:17clinical trials and a lot
• 11:18of research that is kicking
• 11:20off within this place. And
• 11:22we encourage you to ask
• 11:23more about this and be
• 11:24a part of this journey.
• 11:26And with that, I'm gonna
• 11:28introduce doctor Boffa, who's here.
• 11:30So doctor Boffa is gonna
• 11:31talk to talk to us
• 11:32about the surgical
• 11:34aspects of,
• 11:36this cancer. Doctor Buffa, please.
• 11:38Great.
• 11:39Well, thank you guys for
• 11:41coming. I don't have slides.
• 11:43I could act some things
• 11:44out or I you guys
• 11:46probably
• 11:48know more about the the
• 11:49this experience than I do.
• 11:51I I will say that,
• 11:54there's been quite an evolution
• 11:56in
• 11:57the surgery for esophageal cancer.
• 11:59And, you know, not too
• 12:01long ago,
• 12:02thirty or forty years ago,
• 12:03there really wasn't a great
• 12:05option. I mean, there there
• 12:06really wasn't a way to
• 12:08make a new esophagus
• 12:09out of the existing plumbing.
• 12:12And that really is the
• 12:13challenge is how do you,
• 12:16how do you reconstruct somebody?
• 12:17How do you get rid
• 12:18of everything that is involved
• 12:20in cancer
• 12:21and,
• 12:22then restore
• 12:24the anatomy so that they
• 12:25could, so that people can
• 12:27return to an acceptable quality
• 12:28of life. And it it's
• 12:30challenging. And
• 12:32right now, our best option
• 12:34for most patients is to
• 12:35take part of the stomach.
• 12:37And so we get rid
• 12:38of about, for most patients,
• 12:39we get rid of about
• 12:40two thirds of the esophagus
• 12:41and a third of the
• 12:42stomach and make a tube
• 12:43out of the,
• 12:45stomach and pull it up
• 12:46through the chest. And,
• 12:48we're able to do that
• 12:48minimally invasively. That's sort of
• 12:50an innovation that happened maybe
• 12:53twenty years ago,
• 12:55and has just gotten better
• 12:56and better,
• 12:57over time. But,
• 12:59it's definitely
• 13:01an operation that if you
• 13:02can avoid it, you, you
• 13:03know, you should avoid it.
• 13:05And so I think that
• 13:07where the biggest areas for
• 13:09innovation are are finding people
• 13:12where it's earlier because
• 13:14unlike, say, pancreatic cancer, where
• 13:16if you have a small
• 13:17tumor in the middle of
• 13:18your pancreas,
• 13:19there's not a radically different
• 13:21operation that we can do.
• 13:23But finding it really early
• 13:24in the esophagus, there's actually
• 13:26there are a lot of
• 13:27options. And so, you know,
• 13:29when we think of, like,
• 13:30AI and what it's gonna
• 13:31do for us, I I
• 13:32really think that there's very
• 13:33few
• 13:35esophageal cancer and gastric cancer
• 13:37in particular have a real
• 13:39unique,
• 13:40potential to find the right
• 13:41people because a lot of
• 13:42the symptoms,
• 13:44that people have and a
• 13:45lot of the conditions that
• 13:47lead to esophageal cancer are
• 13:49really common. You know, heartburn,
• 13:51reflux, you know, who doesn't
• 13:53or who hasn't had that
• 13:54at one time or another.
• 13:55And so you can't give
• 13:56everybody an upper endoscopy, you
• 13:58know, every six months. And
• 13:59so how do you use
• 14:00this to really
• 14:02find the people? Because if
• 14:03if you find it really
• 14:04early, there's there's a lot
• 14:06more options and that are
• 14:07a lot easier on patients.
• 14:08So,
• 14:11it's I think we're constantly
• 14:13trying to understand ways of
• 14:15making this less impactful.
• 14:18And and I would say
• 14:19that,
• 14:20there's not a lot of
• 14:21operations that I personally do
• 14:23that I don't think you
• 14:24can have done somewhere else.
• 14:27I think some of the
• 14:28esophageal cancer operations, we just
• 14:30have such a great team
• 14:31here, and,
• 14:33we've we've been doing this
• 14:34a long time. And I
• 14:35think that,
• 14:36the difference between our outcomes
• 14:39and and a lot of
• 14:40other places' outcomes are not
• 14:42me. It's just we have
• 14:43a great team. You know?
• 14:44Our nurses,
• 14:46you know, it's not easy
• 14:47to recover from an esophageectomy.
• 14:49They you know? Our nurses
• 14:50will kick your butt and
• 14:51get you up and moving
• 14:53and do everything that needs
• 14:54to happen to keep you
• 14:55safe.
• 14:56But whenever I whenever I
• 14:58hear somebody, you know, is
• 14:59seeing us as a second
• 15:00or third opinion and is
• 15:01choosing somewhere else, I I
• 15:03just say, you know, our
• 15:04nurses that you're you're not
• 15:05I don't care what you
• 15:06think about me, but our
• 15:07nurses are so great and
• 15:08our PAs, and they just
• 15:10spend so much time
• 15:12trying to make this very
• 15:14difficult journey,
• 15:16more manageable. So,
• 15:19I'm happy to answer any
• 15:21questions about anything if anybody
• 15:23has any,
• 15:25about things that are new,
• 15:26things that,
• 15:27you could say, why is
• 15:28it that x, y, or
• 15:29z? I'll I'll answer anything.
• 15:32I mean, don't ask me
• 15:32about my taxes or anything
• 15:34like that. I'm not I
• 15:35I I'm not at liberty
• 15:36to disclose that, but
• 15:38yeah.
• 15:42I was
• 15:44fifty nine.
• 15:46And within
• 15:47oh, sorry. Within,
• 15:49let's see. That was September
• 15:51of twenty three that she
• 15:52had the surgery.
• 15:54And the following year, I
• 15:56could hear my husband
• 15:57making sounds that concerned me.
• 16:00And,
• 16:01he was diagnosed
• 16:03about a year and about
• 16:05fifteen months later. Immediately,
• 16:08surgery was not an option.
• 16:09Is there some criteria that,
• 16:12I mean, other than
• 16:14he was age
• 16:15eighty five at that point
• 16:16versus her fifty nine, do
• 16:18you consider age an immediate
• 16:20exclusion for surgery?
• 16:22No. So what what I
• 16:24would say
• 16:26is really any
• 16:28person that takes care of
• 16:30cancer patients,
• 16:32the first job is to
• 16:33say, what's gonna get you
• 16:34into trouble? And it's one
• 16:35of three things. It's either
• 16:37the tumor we can see,
• 16:39it's the tumor we can't
• 16:40see,
• 16:41or it's something unrelated to
• 16:43tumor. So if somebody has
• 16:45a lot of medical problems,
• 16:47honestly, the cancer may not
• 16:48be the front of the
• 16:49stove.
• 16:51If it's contained in the
• 16:52esophagus,
• 16:53then it's usually the tumor
• 16:55we can see and we
• 16:56go
• 16:57big on trying to get
• 16:59that taken care of. And
• 17:00it can be surgery, it
• 17:01can be radiation,
• 17:02but that's attacking it where
• 17:03we can see.
• 17:05If it's spread to a
• 17:06bunch of lymph nodes
• 17:07or it has spread to
• 17:09a vital organ,
• 17:11you're much more at risk
• 17:13for the cancer we can't
• 17:14see. And so the the
• 17:15what I will tell patients
• 17:17is it's kind of like
• 17:18if your house is on
• 17:19fire because of the furnace,
• 17:21you don't risk your life
• 17:22to get rid of the
• 17:23furnace. You you put out
• 17:24you treat the whole house,
• 17:25and that's your priority. And
• 17:27so that's really the the
• 17:29issue.
• 17:30But age, you know, in
• 17:32the United States, if you
• 17:33make it to eighty,
• 17:34on average, people live another
• 17:36nine years. So once you
• 17:38make it to eighty, you've
• 17:39actually gone over a lot
• 17:40of hurdles. So I've definitely
• 17:41done esophagectomies
• 17:42on people in their eighties.
• 17:47It is funny that people
• 17:48interpret it that way. On
• 17:49average
• 17:59I just wonder
• 18:01about that up because it
• 18:02was at the very same.
• 18:05Yeah.
• 18:40Yeah. I think that,
• 18:42so I have a lot
• 18:43of sayings. They kind of
• 18:44are my,
• 18:46my way of kind of
• 18:47framing things. And so I
• 18:49think,
• 18:50doing high risk surgery is
• 18:52very reasonable. I mean, sometimes,
• 18:54we you know, that's just
• 18:54what we do, and a
• 18:55lot of what I do
• 18:56is high risk.
• 18:58I think doing surgery
• 18:59that you're not
• 19:01confident is gonna help the
• 19:03person is also reasonable because
• 19:05sometimes there is no other
• 19:06option. I just don't do
• 19:07those in the same patient.
• 19:09So if I'm not a
• 19:10hundred if I'm not really
• 19:11sure so I if I'm
• 19:12gonna do a big surgery,
• 19:13I better be pretty confident
• 19:15that
• 19:16that I'm gonna help them
• 19:17because,
• 19:18you know, it's otherwise,
• 19:20there there are other consequences.
• 19:26Yeah.
• 19:27I think I'll add to
• 19:28doctor Buffet's comment about this
• 19:29fact that couple of things
• 19:31about surgery. One is
• 19:36the key for surgery still
• 19:37remains one of the main
• 19:39ways in which we can
• 19:40cure the cancer.
• 19:41But one of the key
• 19:43things about the surgery is
• 19:45doctor Boffa, the surgeon, has
• 19:46to be able to take
• 19:47everything out, and the first
• 19:48patient has to survive taking
• 19:50everything out. There's no point
• 19:51in taking out fifty percent
• 19:52of the cancer, sixty percent
• 19:54of the cancer, eighty percent.
• 19:55It's hundred or nothing.
• 19:57Lots of studies have shown
• 19:58that even if ninety five
• 19:59percent is taken out, it's
• 20:01the remaining five percent that
• 20:02will take life. And often,
• 20:04the ninety five percent sort
• 20:05of surgeries are the ones
• 20:06that actually have poorer outcomes
• 20:08and you actually do worse
• 20:10than not doing surgery at
• 20:11all and just going through
• 20:13chemo or radiation.
• 20:14And so that's kind of
• 20:15why it's always a multidisciplinary
• 20:18discussion between the surgeons, the
• 20:19radiation, and the medical oncologist
• 20:22on what is the best
• 20:24approach for each individual patient,
• 20:26not just can I cut
• 20:28that tumor out, but how
• 20:29does that fit within the
• 20:30rest of the body? How
• 20:31are the other medical conditions?
• 20:32Are there ways in which
• 20:33we can shrink the tumor
• 20:34down so that we can
• 20:35get it to surgery? The
• 20:37the
• 20:38we always get the surgeons
• 20:39involved because we know that
• 20:41surgery is often the only
• 20:42way to cure the cancer.
• 20:44There are emerging ways in
• 20:46which we can try and
• 20:47avoid the surgery, but that's
• 20:48still very carefully thought through.
• 20:50It's not something we just
• 20:51throw out of the bat
• 20:52and be like, okay. Don't
• 20:53do surgery and you're cured
• 20:55from your cancer. That's a
• 20:56very, very carefully thought through
• 20:57this decision that's very individualized.
• 20:59And,
• 21:01if you've made that decision
• 21:03to not offer surgery, it's
• 21:04not a flippant, oh, we
• 21:05think you're too old for
• 21:06it, and therefore, we're not
• 21:07offering it to you. It's
• 21:08it's a very thought through
• 21:09decision because at the end
• 21:10of the day, the other
• 21:11rule about cancer treatment in
• 21:13general is we know we're
• 21:14dealing with a deadly disease,
• 21:16but the rule is do
• 21:17no harm first. The last
• 21:19thing we wanna do is
• 21:20do something that's gonna end
• 21:21up shortening life or making
• 21:22things worse than we know
• 21:24the cancer's bad and we
• 21:25know it's gonna do bad
• 21:26things. But if we do
• 21:27something that makes things worse,
• 21:28that's the worst thing to
• 21:29do. And so that's a
• 21:30very nuanced decision, and it's
• 21:32hard in an audience to
• 21:33go through specific sort of
• 21:36decisions. But it's not something
• 21:38we
• 21:39just often very flippantly rule
• 21:41out and say there's no
• 21:41surgery. We we do think
• 21:43these things through. And this
• 21:44is not just Yale. Most
• 21:46groups would think this stuff
• 21:47through before we say that
• 21:48we're ruling a certain treatment
• 21:50option out.
• 21:52Other questions for doctor Buffa?
• 21:57Well, we heard about radiation,
• 21:59and
• 22:00while there may be side
• 22:01effects from radiation, it's still
• 22:02a very, very important part
• 22:03and a curative part
• 22:05very curative part of,
• 22:08gastric esophageal cancer treatment. And
• 22:09with that, I'm gonna invite
• 22:10doctor Du to give us
• 22:12a talk. But thank you,
• 22:12doctor Buffa. Yeah.
• 22:19Thank you, doctor Sundar.
• 22:21My name is Kevin Du.
• 22:22I'm a radiation oncologist
• 22:23treating, GI cancers, including esophageal
• 22:26cancers. And,
• 22:30I oh, thank you.
• 22:31I I've been
• 22:32I I think what I'll
• 22:34I did I think I'm
• 22:36one of the few people
• 22:37maybe to to put together
• 22:38a slide deck, but I'm
• 22:39going to try not to
• 22:41use it too much. And,
• 22:43I'm realizing as I'm sitting
• 22:44here in the room,
• 22:46surrounded by esophageal cancer patients.
• 22:48And, you know, as a
• 22:49cancer doctor, I always think
• 22:51of that, I learn more
• 22:53from my patients,
• 22:54actually,
• 22:55than than I can teach
• 22:56them.
• 22:58So, I would actually maybe
• 23:00like to start with, the
• 23:01comment you made, which I
• 23:02think is very important when
• 23:03we think about how long
• 23:05term wellness after radiation treatment,
• 23:07which is that, radiation was
• 23:09torture.
• 23:10You know? And and that's,
• 23:12that's very,
• 23:13that's very important to to
• 23:15think about and talk about.
• 23:17How many patients in this
• 23:19room have have had radiation?
• 23:21So a good number of
• 23:22patients.
• 23:24Is there is there pretty
• 23:25much agreement that it was
• 23:26torture?
• 23:28Yeah. Okay. Yeah. Yeah. And
• 23:30still yeah. Yeah.
• 23:32So this is where,
• 23:34I can talk a little
• 23:35bit about radiation, the role
• 23:37in treatment of esophageal cancer.
• 23:40And, I think it's very
• 23:42important to talk about this
• 23:43concept that,
• 23:46in when we talk about
• 23:47first do no harm,
• 23:49that
• 23:51a lot of our cancer
• 23:52treatments can cause harm, and
• 23:53we need to help our
• 23:54patients with this.
• 23:56So the first thing to
• 23:57think about is that,
• 23:59you know, as you know,
• 24:00we think a lot about
• 24:03radiation treatment as, I would
• 24:05say,
• 24:06even though there are significant
• 24:08side effects that we do
• 24:09think about it as a
• 24:11precision treatment and a carefully
• 24:13delivered treatment.
• 24:14And,
• 24:16we use a lot of
• 24:17what we learned in the
• 24:18past century with,
• 24:20physics, biology,
• 24:21computer technology to really try
• 24:23to separate out the therapeutic
• 24:24index,
• 24:26that is the side effects
• 24:27from the effectiveness of radiation
• 24:29treatment.
• 24:31This is an example, though,
• 24:33of what a radiation treatment
• 24:34looks like,
• 24:36generated by AI, by the
• 24:38way, not not one of
• 24:39my patients.
• 24:40But you can tell in
• 24:41the red colors, and I
• 24:43don't know if any of
• 24:44your radiation doctors have shown
• 24:45you your own radiation plans.
• 24:47But, you know, we customize
• 24:49these radiation plans based on
• 24:51an individual patient's anatomy.
• 24:53But you can see that,
• 24:56a lot of a lot
• 24:57of the,
• 24:58a lot of times we're
• 24:59treating very large areas of
• 25:00the esophagus.
• 25:02And, that leads to
• 25:04a lot of the, side
• 25:05effects during treatment, including sometimes
• 25:08hospitalizations
• 25:09because,
• 25:10of difficulty swallowing,
• 25:12and, weight loss.
• 25:14And,
• 25:15and then in addition, you
• 25:16know, we're aiming right
• 25:18between the lungs, and we're
• 25:20aiming right behind the heart.
• 25:23So the heart and lungs
• 25:24are very important vital organs.
• 25:27And,
• 25:28the exposure of radiation
• 25:30to these organs is really
• 25:31where a lot of the
• 25:32side effects come from in
• 25:33the long term, from radiation
• 25:35treatment.
• 25:37The good news is that
• 25:38over time, and, I guess,
• 25:40I would say that, certainly
• 25:42in the last ten years,
• 25:43our computer technology has actually
• 25:46advanced
• 25:47greatly. So the radiation treatment
• 25:49that we give
• 25:51now
• 25:52is a lot more precise.
• 25:53And,
• 25:55not only that, but we've
• 25:56learned from previous experience to
• 25:58really try to reduce the
• 26:00dose of radiation exposure to
• 26:02the heart, to the lungs,
• 26:04in order to try to
• 26:05mitigate some of these
• 26:07long term issues.
• 26:10So,
• 26:11ultimately,
• 26:12you know, after radiation,
• 26:15weight loss is a very
• 26:16important
• 26:17thing to think about, and,
• 26:19I'm really pleased that we
• 26:20have our nutritionist here to
• 26:22talk to you about this.
• 26:24You know, we actually think,
• 26:26that early nutritionist
• 26:28intervention,
• 26:29having a meeting with a
• 26:31registered dietitian
• 26:33improves,
• 26:34how patients get through treatment
• 26:35and also survival after treatment.
• 26:38Weight loss is associated with
• 26:40poor outcomes.
• 26:41And so every single patient
• 26:43that I see in my
• 26:44clinic sees a nutritionist. We
• 26:46have a nutritious come to
• 26:47our clinic and
• 26:48meet with them in our
• 26:49clinic rooms, and that's very
• 26:51important. And,
• 26:53I I would recommend,
• 26:55you know, that this is
• 26:56an essential part of,
• 26:58recovering from radiation.
• 27:00Deconditioning,
• 27:01fatigue.
• 27:02It's been demonstrated
• 27:04that, after chemotherapy and radiation,
• 27:07patients actually lose muscle mass,
• 27:09sarcopenia,
• 27:10they call it.
• 27:11As you can imagine, if
• 27:13you lose muscle mass, you
• 27:14get weaker. It's harder to
• 27:16get back into shape, harder
• 27:17to recover, harder to get
• 27:19back to your normal activities
• 27:20and your daily routine,
• 27:22easier to just feel like
• 27:24sitting around all day.
• 27:26And,
• 27:26so,
• 27:27this is something that has
• 27:28been
• 27:30more and more,
• 27:31that
• 27:33mild to moderate
• 27:34exercise, regimented exercise has been
• 27:36shown to be important in
• 27:38cancer
• 27:39recovery.
• 27:40And, the way I talk
• 27:41to my patients about it,
• 27:41it's really about building up
• 27:42muscle mass. You know? Nutrition,
• 27:44exercise,
• 27:46trying to get back into
• 27:47shape after all this,
• 27:49torture. You know? And,
• 27:52and this is very important,
• 27:53for recovery.
• 27:57Something
• 27:58which,
• 28:00you know, I think is
• 28:01very important about what you
• 28:02shared, which is that your
• 28:04family had and, by the
• 28:05way, I'm really sorry
• 28:07about what your family has
• 28:08gone through. It's it's heartbreaking.
• 28:12But one thing which really
• 28:13resonated was this idea of
• 28:14a, of needing a feeding
• 28:16tube
• 28:17after a treatment.
• 28:20Sometimes after radiation, there can
• 28:22be, what are called esophageal
• 28:24strictures. So this is something
• 28:25that can happen even a
• 28:26few months after radiation is
• 28:28over, where there can be
• 28:30enough scar tissue that the
• 28:31esophagus narrows
• 28:33and,
• 28:34and and constricts and makes
• 28:36difficult, swallowing difficult.
• 28:39So,
• 28:40I would encourage if, folks
• 28:41are having difficulty with this,
• 28:44that, a speech language pathology
• 28:46consultation is very important,
• 28:49to try to learn how
• 28:50to swallow better.
• 28:52And then also,
• 28:53we have excellent endoscopists who
• 28:55can actually,
• 28:56with an endoscopy, go in
• 28:58and open up the stricture,
• 28:59break up the scar tissue,
• 29:01to try to open that
• 29:02up and make swallowing easier.
• 29:04So that's another, important thing.
• 29:06This is probably the the
• 29:07most common long term side
• 29:09effect of radiation. Actually,
• 29:11about five percent of patients
• 29:12can can see this.
• 29:14And then, the lungs are
• 29:16very important.
• 29:17You know, as I'm talking
• 29:18about, trying to get back
• 29:20to physical activity,
• 29:21sometimes there can be a
• 29:23a a inflammation
• 29:24of the lungs from radiation
• 29:26treatment.
• 29:27These pictures are actually not
• 29:28from esophageal cancer patient. They're
• 29:31actually from a lung cancer
• 29:32patient.
• 29:33I I actually,
• 29:35fortunately, I think with how
• 29:37we're reducing the
• 29:38the, the lung exposure to
• 29:40radiation
• 29:41these days,
• 29:42this is not something that
• 29:44I have really seen in
• 29:45my patients.
• 29:46However, about
• 29:49twenty percent of patients may
• 29:51have an inflammation of lungs,
• 29:52about five percent,
• 29:54very severe
• 29:55fibrosis
• 29:56or scar tissue in the
• 29:57lungs.
• 29:59If that happens,
• 30:01steroids may be needed. And,
• 30:03I I would say that,
• 30:05antioxidant therapy has been shown
• 30:07to help to mitigate the
• 30:08scar tissue effect with radiation.
• 30:10So,
• 30:11many times, I may recommend
• 30:13for my patients a combination
• 30:14of
• 30:15of, of medications to help
• 30:18improve and soften up the
• 30:20scar tissue.
• 30:22And then,
• 30:23very importantly,
• 30:24cardiac toxicity. So we know
• 30:26actually that,
• 30:27the more radiation the heart
• 30:30sees, actually, the the,
• 30:32the the poorer the patient
• 30:34does.
• 30:35And so, again, these days,
• 30:36now that we're very cognizant
• 30:38of this, we really try
• 30:39to reduce the radiation exposure
• 30:41to the to the, heart,
• 30:44about, one percent serious cardiac
• 30:46events in patients after,
• 30:48after radiation treatment.
• 30:50And,
• 30:51this is again where, not
• 30:53just in, treating esophageal cancer,
• 30:55but across the board, cardio
• 30:57oncology
• 30:58is actually a very important
• 31:00thing for any,
• 31:02cancer survivor to think about.
• 31:04And we have an excellent,
• 31:05cardio oncology programs, cardiologists who
• 31:08specialize
• 31:09in, taking care of cancer
• 31:11survivors.
• 31:13This is something where, the
• 31:15primary effect of radiation is
• 31:16really in terms of a
• 31:18long term change to the
• 31:19blood vessels of the heart,
• 31:22similar to how, high blood
• 31:24pressure, high cholesterol,
• 31:25you know, it can all
• 31:27affect the blood vessels of
• 31:28the heart.
• 31:29And so,
• 31:30these are modifiable risk factors.
• 31:33And, being as, up on,
• 31:35making sure you're exercising, good
• 31:37diets, low cholesterol, your blood
• 31:39pressure is under
• 31:41control. All that is very,
• 31:42very important for esophageal cancer
• 31:44survivors.
• 31:47And then, of course, the
• 31:48psychosocial
• 31:49burden.
• 31:50You know,
• 31:52I think going back to
• 31:53this idea of being tortured,
• 31:55these are things that folks
• 31:57need to recover from.
• 31:59And,
• 32:00sometimes patients really may need
• 32:02help, with recovering from this.
• 32:04And, again, that's where we
• 32:05have a excellent psycho oncology
• 32:08team here,
• 32:09folks who can actually,
• 32:12help with,
• 32:13guiding patients toward a better
• 32:14recovery.
• 32:15And,
• 32:16all of you here today
• 32:17as well talking about your
• 32:19experiences,
• 32:20a very important thing, to
• 32:21think about afterwards.
• 32:24So, ultimately,
• 32:26I would say as I'm
• 32:27running out of time or
• 32:28past time,
• 32:30that
• 32:31we do think about
• 32:33long term follow-up and care
• 32:35as being very important in
• 32:36my field.
• 32:39If you are noticing new
• 32:41difficulty swallowing, weight loss, shortness
• 32:43of breath,
• 32:44chest pain, fatigue,
• 32:47emotional distress, you know, these
• 32:49are all reasons and things
• 32:51that we talk about when
• 32:52we see you after the
• 32:53treatment. And, we have a
• 32:55team here to help. You
• 32:57know,
• 32:57I'm not an expert in
• 32:59all of these things, but
• 33:00I know who the experts
• 33:01are, and, your doctors
• 33:03know who the experts are.
• 33:06Make sure you talk to
• 33:07your doctors about these things.
• 33:08They're very important, and, there
• 33:11are things we can do
• 33:12to help.
• 33:15So, I'll just finish I'll
• 33:17I'll actually skip over this
• 33:18part, and
• 33:21maybe turn this, open it
• 33:22up for any comments,
• 33:24questions.
• 33:25Yeah.
• 33:27Is
• 33:30there any way to distinguish
• 33:32whether it's, caused by
• 33:34the radiation or the immuno
• 33:36Yeah. Yeah. I think, so,
• 33:38doctor Yock, as you know,
• 33:40I'm I'm very familiar with
• 33:42your with your, care.
• 33:44This is something where,
• 33:47you you had immunotherapy
• 33:49after,
• 33:50after your surgery.
• 33:52And that's actually an important
• 33:54part of,
• 33:55what doctor Raga was talking
• 33:56about in terms of newer,
• 33:58more innovative, more effective,
• 34:00cancer treatments for esophageal cancers
• 34:02that are shown to improve
• 34:04outcomes.
• 34:05So So immunotherapy by itself
• 34:06can also cause pneumonitis.
• 34:08And so,
• 34:09I would say that,
• 34:11you know, when when a
• 34:12patient gets pneumonitis that I've
• 34:14treated, the first thing that
• 34:15the medical oncologist or the
• 34:16surgeon does is call me
• 34:18and say, does this look
• 34:19like radiation pneumonitis?
• 34:21The things we look for
• 34:22in radiation pneumonitis are really,
• 34:24is the inflammation
• 34:26in our field
• 34:28of radiation,
• 34:30or is it really distant
• 34:31and outside of where we've
• 34:32exposed to radiation?
• 34:35And, you know, there's all
• 34:36these things that we can,
• 34:38think about in terms of,
• 34:40how focal, how patchy,
• 34:42you know, how their inflammation
• 34:43tracks,
• 34:45and things
• 34:46about how the how it
• 34:47looks on the CT scan.
• 34:49So,
• 34:51ultimately,
• 34:52I would say that,
• 34:56many times as a judgment
• 34:57call whether or not it's
• 34:58from, immunotherapy
• 35:00or drug or from radiation.
• 35:04I I think in your
• 35:05case, we did think about
• 35:06it as more of an
• 35:07immunotherapy
• 35:08reaction.
• 35:09I would say that, this
• 35:10is also very important in
• 35:11terms of modern radiation and
• 35:13how we, reduce the lung
• 35:15dose, which is that as
• 35:16we start stacking on all
• 35:18these treatments that increase inflammation
• 35:20like immunotherapy,
• 35:22trying to reduce the lung
• 35:23exposure to radiation with radiation
• 35:25really becomes more important as
• 35:27well.
• 35:29Any other questions?
• 35:31I will add to what
• 35:33doctor Du said,
• 35:34about this. While we're talking
• 35:36a fair bit about the
• 35:37side effects and,
• 35:39the the complications that we're
• 35:41dealing with with
• 35:43radiation that
• 35:44the reason we subject
• 35:46or ask you to be
• 35:47subjected to the radiation is
• 35:49because,
• 35:51if
• 35:52it often does one of
• 35:53two things. Right? One is
• 35:55if you can't get surgery,
• 35:57then the only directed treatment
• 35:59to the esophagus is gonna
• 36:00be radiation. Otherwise,
• 36:02all the drugs that medical
• 36:03oncologists give, systemic therapies, all
• 36:05just go everywhere, and we
• 36:06just hope it gets to
• 36:07the esophagus. Right? But if
• 36:08you wanna really get to
• 36:09the esophagus and kill everything
• 36:10off there, radiation tends to
• 36:12still be one of the
• 36:14most important components to the
• 36:15treatment there. And therein goes
• 36:17back this balance of risks
• 36:19and benefits. And
• 36:21at least in this sort
• 36:21of situation, if surgery is
• 36:23not a curative option,
• 36:25generally speaking, just chemotherapy or
• 36:27systemic therapy is not a
• 36:29cure will not cure the
• 36:30cancer. You kind of need
• 36:31the radiation in there to
• 36:33give you that shot of
• 36:34long term control and cure,
• 36:35and that's kind of why
• 36:37we have this balance of
• 36:38the benefits and risks of
• 36:39radiation.
• 36:40We subject we ask you
• 36:42to be subjected to this
• 36:44stuff is because of that
• 36:45benefit.
• 36:46Or the alternative is if
• 36:48you're using the chemo and
• 36:49radiation to get the tumors
• 36:50to get you to surgery,
• 36:51which is also a cure.
• 36:52So very often, the radiation
• 36:54is very much trying to
• 36:55get you to that cure
• 36:56that we are aiming for,
• 36:57and that kinda sets the
• 36:59context to why then we
• 37:00may still have to deal
• 37:01with the side effects from
• 37:02it, but
• 37:03that that's the background to
• 37:05this. Right? Yeah. I think
• 37:06that's a very fair point.
• 37:08Thank you for coming to
• 37:09the defense of radiation, doctor
• 37:11Sundar.
• 37:13I I think this is
• 37:14really interesting. You know, we
• 37:16use radiation to help make
• 37:17doctor Boffa's surgery more successful
• 37:19many times. You know? Sometimes
• 37:21if, you're only able to
• 37:23get ninety five percent of
• 37:24the tumor, as you were
• 37:25saying earlier,
• 37:26with surgery,
• 37:27radiation can help convert that
• 37:29to a hundred percent. Right?
• 37:31Sometimes, if a patient may,
• 37:33because of other reasons, not
• 37:34be eligible for a big
• 37:36thoracic surgery,
• 37:38Radiation can be a curative
• 37:39treatment just by itself with
• 37:41chemotherapy.
• 37:42You know, we're not as
• 37:43good as surgery.
• 37:45The complete response rates with
• 37:47chemoradiation
• 37:48range from thirty to fifty
• 37:50percent of patients.
• 37:52Although, for those thirty to
• 37:53fifty percent of patients, if
• 37:54they have a complete response,
• 37:56we may actually be able
• 37:57to avoid a a big
• 37:59surgery, and, sometimes that actually
• 38:01improves patients' quality of life
• 38:03to to keep their esophagus.
• 38:06You know, that's an active
• 38:07area of research in my
• 38:08field, which is how can
• 38:09we, one,
• 38:11as I've been talking about,
• 38:12make radiation safer, more tolerable,
• 38:15less long term side effects.
• 38:16But two, also, how can
• 38:18we convert how can we
• 38:19get more complete responses, more
• 38:21cures with,
• 38:22chemotherapy radiation,
• 38:23potentially,
• 38:24combining it with all the,
• 38:26new drugs that are coming
• 38:27out? So these are important
• 38:29questions,
• 38:30and we think about the
• 38:31combination of surgery, chemotherapy, radiation,
• 38:33and trying to find that
• 38:34right balance of side effects.
• 38:38Thanks, doctor Lu. That's great.
• 38:39Any other questions for doctor
• 38:40Lu?
• 38:42If not, we'll move on.
• 38:43Thank you, doctor Lu. And
• 38:44we'll we'll move on to
• 38:45the next
• 38:47part which we have been
• 38:48focusing very bit about and
• 38:50which actually will play a
• 38:51big role here is actually
• 38:53the whole idea that you
• 38:54need more than just,
• 38:57drugs and surgery to try
• 38:58and to fight this cancer.
• 38:59And so we're gonna have,
• 39:02Scott Kapoza from physical physiotherapy
• 39:05as well as Natalie Smith
• 39:06from nutrition giving us a
• 39:07little bit about how we
• 39:09support our patients through this
• 39:10journey,
• 39:11Scott and Natalie.
• 39:14Alright.
• 39:17Sure.
• 39:19Alright. So we also said
• 39:21we weren't gonna do a
• 39:22PowerPoint,
• 39:23but to keep us on
• 39:25track, we did.
• 39:27To start off, my name
• 39:28is Natalie Smith. I'm an
• 39:30oncology certified dietitian.
• 39:32I've been working in oncology
• 39:33for a little over twelve
• 39:34years.
• 39:36For the first ten years
• 39:37of my career, I was
• 39:38really managing active treatment patients
• 39:39that were going through concurrent
• 39:41chemoradiation
• 39:42for esophageal,
• 39:44colon, breast, ovarian,
• 39:46a lot of head and
• 39:47neck patients,
• 39:48tongue cancer, base of tongue.
• 39:50So the experience I've I've
• 39:52had really helps me in
• 39:53this survivorship realm,
• 39:55which we're gonna go into
• 39:56the specifics of what we
• 39:57do and where we fit,
• 39:59in your treatment journey.
• 40:02Also,
• 40:03really, we me and Scott
• 40:05try to educate patients on
• 40:06the importance of the credentials
• 40:07after our name. So, obviously,
• 40:09nowadays, everybody's a nutrition professional
• 40:11online. So it's really important
• 40:13when you're watching videos, when
• 40:14you're getting oncology information,
• 40:16especially nutrition information,
• 40:18physical therapy information.
• 40:20You're getting it from people
• 40:21with the right credentials. So
• 40:23CSO is that certified specialist
• 40:25in oncology for dietitians.
• 40:27I think there's twenty of
• 40:28us in Connecticut, and twelve
• 40:29of us are at Yale.
• 40:30So you have a really
• 40:31good chance of meeting a
• 40:32CSO here. So I'll let
• 40:34Scott introduce himself.
• 40:36Thanks, Adam. Yeah. I'm I'm
• 40:37Scott. Are you on?
• 40:39I think I'm on now.
• 40:41I'm Scott Capoza. I'm a
• 40:42I'm a physical therapist here
• 40:44as Natalie said.
• 40:46I got my start at
• 40:47Smilow in survivorship back when
• 40:49the survivorship clinic first opened
• 40:51back in two thousand six.
• 40:53So the survivorship clinic actually
• 40:55predates
• 40:56the Smilow Cancer Hospital building.
• 40:59And and that's how I
• 41:00got my start. And,
• 41:03when we started our survivorship
• 41:04program back in two thousand
• 41:06six,
• 41:07it was a multidisciplinary
• 41:08approach because we recognized that
• 41:10that the needs of cancer
• 41:11survivors are complex.
• 41:13And so you needed a
• 41:14multidisciplinary
• 41:15approach
• 41:16to address the nutritional concerns
• 41:18of of cancer survivors, of
• 41:20the psychosocial
• 41:22concerns of survivors
• 41:24as well as the the
• 41:25medical concerns of survivors
• 41:28and the physical
• 41:29aspects of that.
• 41:31And so
• 41:32so I worked in survivorship
• 41:34for for years, and I
• 41:36would see these patients and
• 41:37I would say, oh, you
• 41:38need physical therapy because you
• 41:40have neuropathy from your chemotherapy,
• 41:42or or you have range
• 41:42of motion restrictions
• 41:44because of radiation therapy.
• 41:46And then we were I
• 41:47found that we were referring
• 41:48out because we didn't have
• 41:49a certified specialist in oncology
• 41:51here at Smilo.
• 41:53And so I went ahead
• 41:54and I got board certification.
• 41:56And so as you were
• 41:57saying,
• 41:58there are currently
• 41:59six board certified,
• 42:01oncology
• 42:02physical therapists in the state
• 42:04of Connecticut, and two of
• 42:05them are here at Smilo.
• 42:07So, again, I feel like
• 42:08we do a pretty good
• 42:09job of having highly qualified
• 42:11people here.
• 42:15But what what we wanna
• 42:16where we wanna start and,
• 42:17actually, again, doctor Du, wherever
• 42:18you want.
• 42:19Thank you so much for
• 42:20laying the groundwork
• 42:22for all the work that
• 42:23that Natalie and I and
• 42:24and our social work colleagues,
• 42:26do, as far as what
• 42:28we do,
• 42:29to help our patients, you
• 42:31know, after surgery, after chemotherapy,
• 42:33after radiation therapy.
• 42:36But I think it is,
• 42:38important to, you know, first
• 42:40talk about actually, if we
• 42:42can go, yeah, of what
• 42:44is survivorship.
• 42:46And because you might be
• 42:47wondering, well, what does that
• 42:48even mean? And, really, you
• 42:50know, we like to go
• 42:52by this definition from the
• 42:53Nasdaq National Cancer Institute,
• 42:55which talks about the health
• 42:56and well-being of a person,
• 42:58with cancer from the time
• 43:00of diagnosis to the end
• 43:01of their life. And this
• 43:03includes
• 43:03the physical aspects,
• 43:06the mental
• 43:07aspects,
• 43:08the emotional,
• 43:09the social, and we could
• 43:11probably have a whole another
• 43:12talk about the financial concerns
• 43:13at the same time.
• 43:15But knowing that survivorship
• 43:17is through the balance of
• 43:18this patient's of everybody's life
• 43:20is really, really important.
• 43:22And, again, it's not just
• 43:24one
• 43:25thing, and it is very
• 43:26unique.
• 43:27Everybody's survivorship needs are unique
• 43:29to the person. And so
• 43:30that's one of the things
• 43:31that Natalie and I say
• 43:32so often is that we
• 43:33try to meet our patients
• 43:35where they're at.
• 43:36And, again,
• 43:37you know, you might even
• 43:38be wondering, you know, who's
• 43:40a cancer survivor?
• 43:42I can't tell you the
• 43:43number of patients that I
• 43:44work with who are still
• 43:45in after treatment. They're still
• 43:47getting chemotherapy or they're still
• 43:48in radiation therapy, and they
• 43:50say, am I a survivor?
• 43:52I'm still in treatment.
• 43:55And, again, I like this
• 43:57definition from the National Cancer
• 43:59Institute
• 44:00that says
• 44:01anybody diagnosed with cancer from
• 44:03the moment
• 44:05of diagnosis
• 44:06and through the balance of
• 44:07his or her life
• 44:08is a cancer survivor.
• 44:10And the way that I
• 44:11like to frame this is
• 44:14you gotta survive the words
• 44:17you have cancer
• 44:18pointed at you.
• 44:20So from that moment on,
• 44:21you're a survivor.
• 44:23But I think for the
• 44:23context of our conversation this
• 44:25evening,
• 44:26we're gonna
• 44:27refer to survivorship
• 44:29in the
• 44:30post active treatment phase, so
• 44:33post
• 44:34surgery,
• 44:35post chemotherapy, and post radiation
• 44:37as far as the the
• 44:39what's next.
• 44:40I think it too. Scott
• 44:41and I always laugh because
• 44:42every clinic we run because
• 44:44we see patients every Wednesday
• 44:45for a full day clinic,
• 44:46and we kind of rotate
• 44:47around to the different cancer
• 44:49centers. And the number of
• 44:50patients that look at us
• 44:51and look like they need
• 44:52to leave because they're like,
• 44:53I don't think I belong
• 44:54here. They always start the
• 44:55visit saying, I don't think
• 44:57I belong here. I don't
• 44:58know what this is. But
• 44:59and at the end, they
• 45:00say, I am so glad
• 45:02I came. Like, thank you
• 45:03so much for this conversation.
• 45:05We round robin. So myself,
• 45:07I meet with the patient
• 45:08for thirty minutes. Scott meets
• 45:09with them for thirty minutes,
• 45:10the social worker for thirty
• 45:12minutes, the APRN for thirty
• 45:13minutes. So it's a long
• 45:14visit, but they feel, like,
• 45:17lighter. They feel like they
• 45:18were heard. We're really like
• 45:19a therapeutic listening clinic.
• 45:22But it's so interesting because
• 45:23everybody sits down there like,
• 45:24I don't really think I
• 45:25should be here. I'm like,
• 45:26no. No. No. No. I
• 45:26think you should be. So
• 45:28we'll get to it.
• 45:30And,
• 45:31and so, again, when we
• 45:33talk about
• 45:34survivorship and, you know,
• 45:36not just us as providers,
• 45:38but as the loved ones
• 45:40of survivors, the friends
• 45:42of survivors.
• 45:43You know, so often, you
• 45:45might ask your person, how
• 45:46are you doing? And
• 45:48as a survivor, the survivor
• 45:49might say, oh, I'm doing
• 45:51okay.
• 45:52But we know that that's
• 45:53only the tip of the
• 45:54iceberg.
• 45:55We know that there's so
• 45:56much more that's going on
• 45:58under the level of water.
• 46:00And so
• 46:01we're not gonna get into
• 46:03all of these concerns tonight.
• 46:05We're really gonna focus just
• 46:06on two aspects of survivorship
• 46:08that we see so commonly
• 46:10in our clinic and that
• 46:12we as, as oncology specialists
• 46:14within our our scope of
• 46:16practice,
• 46:17we'd we address. So we're
• 46:19gonna focus mostly tonight on
• 46:22fear of recurrence
• 46:23and fatigue.
• 46:24But, again, these are some
• 46:26other,
• 46:27you know, common concerns that
• 46:29we hear
• 46:30from our folks that we
• 46:31see in survivorship, and I
• 46:33think the survivors that are
• 46:34in this room could probably
• 46:35are probably all nodding your
• 46:36head and saying, yes.
• 46:38Probably have all experienced that
• 46:39at one point or another.
• 46:41Mhmm. And we usually start
• 46:42the visit by saying, well,
• 46:43how are you doing? And
• 46:45I would say fifty percent
• 46:46of people probably tear up
• 46:47in that question. Right? Because
• 46:49you're just on this treadmill
• 46:50of treatment. Right? Like, you
• 46:51get the diagnosis.
• 46:53You start you go to
• 46:54surgery,
• 46:54maybe radiation, chemo.
• 46:56You come up for a
• 46:57breath. Right? And then you
• 46:59you see us in clinic,
• 47:00and we say, well, how
• 47:01are you doing? And, you
• 47:02know, and the caregiver might
• 47:04get tearful.
• 47:05We're not asking about the
• 47:06cancer or right. We're asking,
• 47:08how are you doing emotionally?
• 47:09How are you doing physically?
• 47:10How are you doing nutritionally?
• 47:12And that brings out a
• 47:13lot of emotion. And I
• 47:13think that's what we love
• 47:14about the clinic is it's
• 47:15such a real
• 47:16face to face. Like, it's
• 47:18a caring clinic that you
• 47:19feel like you can land
• 47:20in kind of an uncertain
• 47:22time.
• 47:24So I love that, like,
• 47:25you guys got the doctor
• 47:26Boffa's perspective with the surgery,
• 47:28you know, the visual of,
• 47:30like, you know, taking part
• 47:31of the stomach, the esophagus,
• 47:32pulling that up, right, using
• 47:33the plumbing. So we I
• 47:35kinda break survivorship for nutrition
• 47:38and for PT
• 47:39into, like, acute and long
• 47:40term survivorship
• 47:41con you know, concerns or
• 47:43conditions. So
• 47:44the acute phase is really,
• 47:46okay. What are these short
• 47:47term concerns that patients typically
• 47:50have? And I listed out
• 47:51kind of very common things
• 47:53that I see very often
• 47:55in the gastroesophageal,
• 47:57population.
• 47:58So, obviously, when
• 48:00anatomy changes, right, things are
• 48:02removed, shortened, lengthened, stretched, whatever
• 48:05we're doing, right, you're probably
• 48:07not gonna be able to
• 48:08eat the same way after
• 48:09that you did before. So
• 48:11if you're eating like my
• 48:12husband who used to bartend
• 48:14and he takes two minutes
• 48:15to eat his full dinner,
• 48:16you know, you have to
• 48:18then slow down, chew your
• 48:20food. Right? You might have
• 48:21to modify the texture.
• 48:23There's something called dumping syndrome
• 48:25that I think a lot
• 48:26of patients aren't
• 48:28aware of. Right? There's early
• 48:29and late dumping syndrome. So,
• 48:31you know, if you're feeling
• 48:32really sweaty after drinking a
• 48:33milkshake and you need to
• 48:34lie down and you feel
• 48:35like you're gonna throw up,
• 48:36like,
• 48:37these things we hear so
• 48:38often. So sometimes patients come
• 48:40in, and they're like, yeah.
• 48:41Yeah. I'm dealing with this.
• 48:42And I say, well, that's
• 48:44this. And they say, oh,
• 48:45okay. What do I do?
• 48:46Alright. That's when we go
• 48:47through the strategies.
• 48:49Right?
• 48:51Altering meal and snack patterns.
• 48:52Okay. Maybe you never ate
• 48:54breakfast, which I see all
• 48:55the time. Now you need
• 48:56to start eating breakfast before
• 48:58you start your day. Right?
• 48:59Maybe you need to pack
• 49:00some snacks in your car.
• 49:01Maybe we need to come
• 49:01up with some smoothies or
• 49:03or shakes that you can
• 49:04drink while you're working.
• 49:06Meeting basic nutrition needs in
• 49:08the beginning right after treatment
• 49:10completion is so important because,
• 49:12as mentioned,
• 49:13weight loss is such a
• 49:14common side effect of treatment
• 49:16to the esophagus.
• 49:17And we know that maintaining
• 49:19weight, maintaining strength, lean body
• 49:21mass is so important for
• 49:23tolerance and recovery.
• 49:24So
• 49:25my goal is to really
• 49:26go through what's your diet
• 49:27recall, what are you eating,
• 49:28what are you drinking, what's
• 49:29your weight trend been, and
• 49:31I go through specifics of
• 49:32how many calories do you
• 49:34need in a day to
• 49:34put some weight on. You
• 49:36know? And then Scott comes
• 49:37in and talks about all
• 49:38the exercise piece.
• 49:40So regaining weight if lost
• 49:42weight through treatment.
• 49:43Again, modifying textures. Maybe you
• 49:45no longer can tolerate tomatoes
• 49:47or tomato sauce. It's too
• 49:48acidic. It burns going down.
• 49:50Right?
• 49:52Manage feeding tubes. So we
• 49:54manage g tubes or j
• 49:55tubes, which are placed in
• 49:56the small intestine.
• 49:58So some patients have this
• 50:00for a short period of
• 50:01time. Some have it long
• 50:02term. So dietitians, especially oncology
• 50:04dietitians, are well trained in
• 50:06this realm as well.
• 50:08And then a speech language
• 50:09pathologist, which I know is
• 50:11mentioned, but it's so important,
• 50:13to include that as part
• 50:14of the team to strengthen
• 50:16muscles that are weakened. Maybe
• 50:17you're not eating food throughout
• 50:18treatment and you're relying on
• 50:20a feeding tube. The speech
• 50:21language pathologist is so important
• 50:23along with a dietitian,
• 50:24a PT, your oncology team
• 50:26to make sure that you're
• 50:27practicing and getting those muscles
• 50:29back that you lost.
• 50:31And food fears is a
• 50:33huge, huge component.
• 50:35I would say probably not
• 50:36as common in gastroesophageal
• 50:37patients,
• 50:39but breast, colon,
• 50:40prostate,
• 50:41everybody is so afraid to
• 50:44eat any food after diagnosis
• 50:46because they worry that there
• 50:47was something they did
• 50:49specifically that caused. I see
• 50:50so many heads nodding.
• 50:52But they're so afraid that
• 50:54they ate or did something
• 50:56from nutrition perspective
• 50:57that they shouldn't have done.
• 50:58So then they get fearful
• 51:00of anything,
• 51:01and then they're worried about
• 51:02putting anything in their body.
• 51:04So there's a lot of,
• 51:05like, mental,
• 51:07psychosocial component of this, but
• 51:09food fears is a huge,
• 51:11huge conversation that I have
• 51:12with a lot of patients.
• 51:17And so, again, from the
• 51:18physical perspective in the short
• 51:20term,
• 51:21again, we wanna make sure
• 51:22that we're first of all,
• 51:23we're minimizing weight loss. So,
• 51:25again, you're having these conversations
• 51:27with the Natalie about, you
• 51:28know, proper nutrition and how
• 51:30to get quality calories
• 51:33back into them. At the
• 51:34same time,
• 51:35I wanna combat weight loss
• 51:37with shrink training. So again,
• 51:39thank you for talking about
• 51:40sarcopenia
• 51:41and how that is a
• 51:43real concern, that muscle the
• 51:44loss of muscle mass is
• 51:45a real concern.
• 51:47The way that I look
• 51:48at that is, you know,
• 51:49it can be anything as
• 51:50functional as, you know, you're
• 51:52having a tough time carrying
• 51:54a basket of of laundry
• 51:55up and down the stairs.
• 51:57But we also know that
• 51:58there's a direct correlation between
• 51:59sarcopenia and an increased risk
• 52:01of falls.
• 52:03And the last thing you
• 52:04need to do after a
• 52:05cancer diagnosis is fall and
• 52:06fracture your hip.
• 52:08So
• 52:09I need to be able
• 52:09to prescribe you an exercise
• 52:11plan. Now this is not
• 52:12the time for CrossFit.
• 52:14This is not the time
• 52:15to flip tires and swing
• 52:16sledgehammers. I pick on CrossFit
• 52:18all the time.
• 52:19But to be able to
• 52:20work with a physical therapist,
• 52:22somebody who is trained and
• 52:23to be able to take
• 52:24you through a progressive
• 52:26strength training program.
• 52:28And sometimes, I'm working with
• 52:29folks, and, again, if they
• 52:31are still fatigued from chemo
• 52:32or they're still fatigued from
• 52:34radiation,
• 52:35and they say, well, how
• 52:36am I going to exercise
• 52:38at all?
• 52:39Well, you know what? We
• 52:40can start with
• 52:42very simple
• 52:49bodyweight exercises.
• 52:51Just practicing
• 52:52sit to stands,
• 52:53or maybe I would have
• 52:54you do some banded exercises,
• 52:56but to do that in
• 52:57sitting
• 52:59versus in standing.
• 53:00So there are plenty of
• 53:02ways
• 53:03to modify
• 53:04an exercise plan, but I
• 53:06have to
• 53:07meet you, and I have
• 53:08to listen to you, and
• 53:09I have to hear what
• 53:10your concerns are to figure
• 53:12out how I can individualize
• 53:14that exercise plan to you.
• 53:16At the same time,
• 53:18exercise, again, we've no. We
• 53:20now have the evidence that
• 53:21shows that every
• 53:23exercise
• 53:24can combat cancer related fatigue.
• 53:27So, again,
• 53:28people might say, well, I'm
• 53:29tired, so I don't feel
• 53:30like exercising.
• 53:32So, again, we're not training
• 53:33for an Ironman triathlon here,
• 53:35but starting with a ten
• 53:37minute walk after breakfast,
• 53:39and then a ten minute
• 53:40walk after lunch,
• 53:43and then a ten minute
• 53:44walk after dinner. I wasn't
• 53:46a math major, but that
• 53:47still adds up to thirty
• 53:48minutes over the course of
• 53:49the day, and that's what
• 53:50we're what we're striving for.
• 53:52And as you start to
• 53:53get more energy back,
• 53:55then you can turn that
• 53:56into one singular
• 53:58thirty minute walk.
• 54:00I think, again, it's important
• 54:02that we talk about short
• 54:03term goals and long term
• 54:05goals.
• 54:06If your long term goal
• 54:07is to get back to
• 54:09what your prior level of
• 54:10activity was, maybe you were
• 54:11running five k's or ten
• 54:13k's, or maybe you, you
• 54:14know, your goal is that
• 54:15you wanna go hike the
• 54:16Grand Canyon.
• 54:18Fantastic.
• 54:19Let's work on that. But
• 54:20before you hike the Grand
• 54:22Canyon, you need to be
• 54:23able to hike Sleeping Giant.
• 54:26So we have to come
• 54:27up with short term goals,
• 54:29achievable
• 54:29short term goals before we
• 54:31can get to that long
• 54:32term goal.
• 54:33Again, I already talked about,
• 54:35reducing, the risk of sarcopenia.
• 54:38And, again, we've we're we're
• 54:39talking about speech therapists tonight.
• 54:41Full disclosure, I'm married to
• 54:43a speech therapist, so I'm
• 54:44contractually obligated to talk about
• 54:46speech therapy.
• 54:48But, yes, speech therapists can
• 54:50do swallow evals. They can
• 54:51do a FEES,
• 54:52in order to be able
• 54:54to find out,
• 54:55do you have a constrictor,
• 54:57in your esophagus because of
• 54:59radiation therapy? And if so,
• 55:00where
• 55:01is that constrictor?
• 55:03And so then they can
• 55:04make the appropriate treatments based
• 55:06on that.
• 55:08Alright.
• 55:09And just so you know,
• 55:10if you do come to
• 55:11clinic, Scott has a backpack
• 55:12that's always full of bands.
• 55:14So he always has patients
• 55:16up in the room, in
• 55:17the doorway,
• 55:18you know, finding contraptions to
• 55:19get people up and moving.
• 55:20He even makes me walk
• 55:21at lunchtime all the time.
• 55:22So he is gonna get
• 55:24you moving.
• 55:25Alright. So moving into the
• 55:26more long term,
• 55:28survivorship,
• 55:29conversations that I might have.
• 55:30So,
• 55:32I always say it's turning
• 55:33the page. So
• 55:35when you're recovering from those
• 55:36acute side effects of radiation,
• 55:39maybe you have the difficulty
• 55:41swallowing, the acid reflux, you're
• 55:43eating a soft diet, you're
• 55:45relying on smoothies or milkshakes
• 55:46to kinda get through,
• 55:48once you feel like that
• 55:51resolves, right, usually, I say,
• 55:53six months, people start feeling,
• 55:54like, back to a new
• 55:56normal where they're kind of
• 55:57their energy is coming back.
• 55:58You know, nutrition's a little
• 56:00bit easier.
• 56:01But I teach them how
• 56:02to turn the page when
• 56:04it comes to going from
• 56:06acute care and side effect
• 56:07management to long term prevention
• 56:11and wellness.
• 56:12So that's kind of a
• 56:13tricky,
• 56:14conversion and kind of a
• 56:15tricky,
• 56:18path for people to figure
• 56:19out themselves.
• 56:20Right? So
• 56:22So addressing eating challenges when
• 56:23returning to work. So some
• 56:25people are teachers, some are,
• 56:27doctors themselves, some are parents,
• 56:30work from home,
• 56:32people sitting down all day,
• 56:35pilots. You know, we've seen
• 56:37it all. Electricians,
• 56:38people that have to eat
• 56:39on the back of their
• 56:40truck when they go back
• 56:41to work. So part of
• 56:43my job is figuring out,
• 56:44okay. Well, what's your meal
• 56:46planning looking like? Your grocery
• 56:47shopping? Who's home? What's your
• 56:49support system? You know? Can
• 56:50you afford groceries? Groceries?
• 56:52All those things kind of
• 56:53come into play.
• 56:56Reducing risk of nutritional deficiencies.
• 56:58Right? So,
• 56:59this is something I'm always
• 57:00looking at. That's why we
• 57:02check lab work, and we're
• 57:03looking at all of the
• 57:04data in the computer all
• 57:05the time.
• 57:07But, obviously, the stomach and
• 57:08the small intestine and the
• 57:10esophagus are all very important
• 57:11for digestion and absorption.
• 57:13So we have to look
• 57:14at all these things to
• 57:15make sure you're getting what
• 57:16you need.
• 57:17Adequate hydration.
• 57:19Right? So if you're somebody
• 57:20after, you know, esophagectomy,
• 57:22and after a chemoradiation
• 57:24and you can't tolerate the
• 57:26same amount of volume
• 57:28that you once could, it's
• 57:29gonna rely on you sipping
• 57:31liquids throughout the day. Right?
• 57:33Some people are not natural
• 57:35water drinkers. I'll admit it.
• 57:36I'm a dietitian, and I
• 57:37hate drinking water. So that
• 57:39that would be a big
• 57:40challenge for me. Right? But
• 57:41we also have people who
• 57:42are talking in front of
• 57:43a group of people. They
• 57:44can't use the bathroom every
• 57:45five minutes. So it's making
• 57:47sure that people have the
• 57:49the strategies and the tips
• 57:50that they need to kinda
• 57:51get back to what they
• 57:52need to do.
• 57:54Weight management. This could be
• 57:55gaining, maintaining,
• 57:56losing.
• 57:58Obviously, in the gastroesophageal
• 58:00population, it's more
• 58:01gaining weight or maintaining or
• 58:03building lean body mass. But
• 58:05in many other diagnoses,
• 58:07that is weight loss that
• 58:08people need. So it kinda
• 58:10goes both ways.
• 58:12And then managing other comorbidities.
• 58:14Right? So as mentioned, a
• 58:15lot of, like, precursors and
• 58:17conditions that are common amongst
• 58:19gastroesophageal
• 58:19patients is acid reflux. Right?
• 58:22So, you know, some people
• 58:24come in and they have
• 58:25a new diagnosis of diabetes
• 58:26after treatment, or they have
• 58:28new kidney disease from chemotherapy,
• 58:31or they,
• 58:32they now have these big
• 58:33conditions along with being a
• 58:35cancer survivor that they're left
• 58:37to manage on their own.
• 58:38So having an oncology dietitian
• 58:40that knows the treatments,
• 58:41knows the side effects,
• 58:43knows the safety of food
• 58:45and swallow,
• 58:46and then also knows how
• 58:47to manage diabetes and heart
• 58:49disease and lower cholesterol
• 58:50and blood pressure, that's huge.
• 58:52So you don't wanna just
• 58:54go to another dietitian out
• 58:55in the community because they
• 58:56might not know the oncology
• 58:57perspective and you feel kind
• 58:58of like, oh, is this
• 59:00what I should be following?
• 59:01Right. It's looking at the
• 59:02whole picture. So I really
• 59:03try in this, like, long
• 59:05term survivorship visit. So maybe
• 59:07somebody who finished treatment five
• 59:08years ago,
• 59:09they might come to me
• 59:10and say, really, my main
• 59:11concern is my diabetes,
• 59:13but I don't know what
• 59:13I can do with the
• 59:14history that I have and
• 59:15what should I avoid.
• 59:18And then, obviously, reviewing evidence
• 59:20based nutrition guidelines. So,
• 59:23how do we optimize health?
• 59:24How do we improve outcomes
• 59:25after a diagnosis specific to
• 59:27the type that you had?
• 59:29Obviously, a plant dominant diet.
• 59:31I'm sure you've heard it.
• 59:32Right? Mediterranean, more fruits and
• 59:34veggies. But for somebody who
• 59:36has difficulty swallowing,
• 59:37you're not eating a kale
• 59:38salad. Right? So how do
• 59:41we how do we connect
• 59:42the dots? How do we
• 59:43help you be the best
• 59:45version of yourself,
• 59:46but also
• 59:47how do you tolerate it
• 59:48and not be miserable at
• 59:49the same time?
• 59:51Were you drinking lots of
• 59:52alcohol before you had the
• 59:53diagnosis?
• 59:54Right? And are you trying
• 59:56to figure out how much
• 59:58is okay to drink now,
• 59:59or have you stopped? Right?
• 01:00:01All these different things that
• 01:00:02we talk about.
• 01:00:04Processed meat is a big
• 01:00:05conversation
• 01:00:06too. We know that,
• 01:00:08deli meats and bacon and
• 01:00:09sausage are directly linked to
• 01:00:12colorectal cancer risk. Right? So
• 01:00:14that's a conversation I have
• 01:00:15a lot of peep people
• 01:00:16too. So if you're eating
• 01:00:17turkey deli meats every day,
• 01:00:18I'd say, hey. Let's replace
• 01:00:19it with something else. Right?
• 01:00:22And lastly, it's just addressing
• 01:00:24any challenges that make consuming
• 01:00:26the type of diet,
• 01:00:27difficult so swallowing difficulty,
• 01:00:29maybe a stricture that develops
• 01:00:30and you need to get
• 01:00:31something dilated,
• 01:00:33needing foods pureed, needing baby
• 01:00:35food sometimes as we can
• 01:00:37kind of incorporate into recipes.
• 01:00:38So, it's definitely not a
• 01:00:40one size fits all.
• 01:00:44And then again, for the
• 01:00:45from the physical perspective for
• 01:00:47for long term health,
• 01:00:49you know, again, one of
• 01:00:50the things that I really
• 01:00:51try to consult my my
• 01:00:53patients on is, you know,
• 01:00:55exercise is not a dirty
• 01:00:56word. Exercise is not a
• 01:00:57four letter word.
• 01:01:00And so how can we
• 01:01:02integrate
• 01:01:03exercise
• 01:01:04into your daily routine to
• 01:01:06be able to make this
• 01:01:07a part of your daily
• 01:01:08routine
• 01:01:09for, you know, for the
• 01:01:10rest of your life, for
• 01:01:11the balance of your life?
• 01:01:11And, again, the you know,
• 01:01:13you've we've all heard about
• 01:01:15the challenge trial, I think,
• 01:01:16at this point that was
• 01:01:17released last year. And, yes,
• 01:01:18this was in patients with
• 01:01:20with GI cancer, but I
• 01:01:22feel like this was the
• 01:01:22holy grail.
• 01:01:24Like, this is the thing
• 01:01:25we've been waiting for to
• 01:01:26definitively
• 01:01:27show that exercise, that prolonged
• 01:01:30exercise actually improves
• 01:01:32survival
• 01:01:32outcomes.
• 01:01:34But how do you do
• 01:01:34that practically?
• 01:01:35Well, I just had this
• 01:01:37conversation with with one of
• 01:01:38the folks that we had
• 01:01:39yesterday in clinic about,
• 01:01:41an accountability partner.
• 01:01:43She's a school teacher,
• 01:01:44and and she says, I
• 01:01:45know I should be walking
• 01:01:47for exercise, but I just
• 01:01:49don't go for a walk.
• 01:01:51And I said, well, you
• 01:01:52know, is there anybody that
• 01:01:53you work with
• 01:01:55that, you know, maybe two
• 01:01:57days a week after school,
• 01:01:58you know, you can go
• 01:02:00for a walk
• 01:02:01after after school before you
• 01:02:02go home. Because we all
• 01:02:03know once we go home,
• 01:02:05we've gotta make dinner. And
• 01:02:06if you've got little kids,
• 01:02:07you've gotta get them to
• 01:02:08soccer practice or you gotta
• 01:02:09help them with math homework.
• 01:02:10And God help you if
• 01:02:11you've gotta if you can
• 01:02:12figure out sixth grade math
• 01:02:14now because I can't.
• 01:02:16So it's so much harder
• 01:02:17to exercise
• 01:02:19when you go home. But
• 01:02:20if you can do that
• 01:02:21right from work
• 01:02:23or you change at work
• 01:02:25and you go to the
• 01:02:26gym on your way home
• 01:02:28and you have somebody to
• 01:02:29meet there at the gym,
• 01:02:31and you better show up
• 01:02:32because if you don't, you're
• 01:02:33gonna get an angry text.
• 01:02:34So to have an accountability
• 01:02:36partner,
• 01:02:38again, helps as far as
• 01:02:40making integrating
• 01:02:41exercise into into your daily
• 01:02:44routine.
• 01:02:44Again, like I was alluding
• 01:02:46to before about short term
• 01:02:47goals and long term goals,
• 01:02:48I think it's so important
• 01:02:49that we're thinking about what's
• 01:02:51important to you and what
• 01:02:52do you wanna do.
• 01:02:54Again,
• 01:02:54hike the Grand Canyon or
• 01:02:56you wanna take that that
• 01:02:57beach vacation. Great. So, again,
• 01:03:00you wanna go on that
• 01:03:01beach vacation.
• 01:03:02You wanna go you wanna
• 01:03:03go to the Bahamas. Great.
• 01:03:05We've gotta work on proximal
• 01:03:06strength to be able to
• 01:03:07lift
• 01:03:09that overhead,
• 01:03:11you know, as your luggage
• 01:03:12into the overhead bin. So
• 01:03:13I can make anything functional.
• 01:03:17And so, again, it's all
• 01:03:18about trying to figure out
• 01:03:19ways of, like,
• 01:03:21increasing cardio and increasing strength
• 01:03:23training,
• 01:03:25you know, but to do
• 01:03:26it practically and to do
• 01:03:27it fun. And I, again,
• 01:03:29I will you know, where
• 01:03:30I think I feel like
• 01:03:31we're admitting all of our,
• 01:03:32like, our our our insecurities
• 01:03:34and all the things that
• 01:03:35we don't do. You don't
• 01:03:36drink water, apparently.
• 01:03:39And I don't go to
• 01:03:39a gym.
• 01:03:42I know. I don't have
• 01:03:42time. I got three kids,
• 01:03:44and so I don't have
• 01:03:45time to go to the
• 01:03:46gym, so I have to
• 01:03:47exercise at home.
• 01:03:49My bike is set up
• 01:03:50downstairs
• 01:03:51on the trainer. I have
• 01:03:52free weights in the basement.
• 01:03:54I do bodyweight exercises downstairs,
• 01:03:57and I'm either doing that
• 01:03:58before I go to work
• 01:03:59or I do that when
• 01:04:01the kids go to bed.
• 01:04:02And that's my life, and
• 01:04:04that's what I have to
• 01:04:05do. Now other people, if
• 01:04:07you have the ability to
• 01:04:08go to the gym and
• 01:04:08you're a gym person, that's
• 01:04:10great. But, again, when I'm
• 01:04:11designing these exercise plans for
• 01:04:13you, I need to talk
• 01:04:14to you, and I need
• 01:04:15to know. Are you a
• 01:04:16gym person?
• 01:04:18You're not a gym are
• 01:04:19you a gym person? You're
• 01:04:20a gym person. Are you
• 01:04:21a gym person?
• 01:04:23Sometimes. So see right here,
• 01:04:24we have to have this
• 01:04:25conversation about, you know, are
• 01:04:27you a gym person or
• 01:04:28you're not a gym person?
• 01:04:30And so and the other
• 01:04:32thing too again is making
• 01:04:33sure when we're thinking about
• 01:04:35quality of life, you know,
• 01:04:36what do you wanna get
• 01:04:37back to? You wanna get
• 01:04:38back to work?
• 01:04:40You wanna get back to
• 01:04:41school? You know?
• 01:04:43You wanna just get back
• 01:04:44to playing with your grandkids.
• 01:04:45So, again, so much of
• 01:04:47what we're doing,
• 01:04:49in survivorship as well as
• 01:04:50our own individual,
• 01:04:53dietary practice and PT practice
• 01:04:55is that, you know,
• 01:04:57our goals are your goals.
• 01:05:01So I'm not gonna go
• 01:05:02through all these, but I
• 01:05:03just wanted to we just
• 01:05:04wanted to list some providers
• 01:05:05in that survivorship network. So,
• 01:05:08you know, it could be
• 01:05:09smoking cessation counselor, your primary
• 01:05:11care, your oncologist,
• 01:05:13social worker, lymphedema therapist.
• 01:05:15The list goes on. So
• 01:05:17it's really definitely
• 01:05:19a team a team job
• 01:05:20and multidisciplinary
• 01:05:21job because I don't pretend
• 01:05:22to be a professional in
• 01:05:24PT. He doesn't pretend to
• 01:05:26know everything about nutrition, but
• 01:05:28we know that we have
• 01:05:29each other right across the
• 01:05:29hall that we can use
• 01:05:30for a resource.
• 01:05:33And then how do you
• 01:05:34get connected with us? So
• 01:05:35if you are interested in
• 01:05:37a referral to survivorship, you
• 01:05:38can self refer. You can
• 01:05:39have your provider refer.
• 01:05:41We have our scheduler, Kiki,
• 01:05:43who is reaching out to
• 01:05:44patients and getting you on
• 01:05:45our schedule.
• 01:05:47So we travel again to
• 01:05:48the different cancer centers. We
• 01:05:49go to Derby, Guilford,
• 01:05:51North Haven, and New Haven,
• 01:05:53and we travel on Wednesdays,
• 01:05:54and it's a full day
• 01:05:55clinic.
• 01:05:56The visits are two hours.
• 01:05:57You spend time, thirty minutes,
• 01:05:59with each provider. So we
• 01:06:00kinda just, like, either move
• 01:06:02you or we move around,
• 01:06:04and we address concerns from
• 01:06:06every angle.
• 01:06:07You can call the number
• 01:06:08yourself.
• 01:06:09Again, we left our emails
• 01:06:10here too, and you can
• 01:06:11always ask us for our
• 01:06:12contact information after if you
• 01:06:14if you can't get this.
• 01:06:16And then just some resources.
• 01:06:18Again, I don't know if
• 01:06:18they were gonna send out
• 01:06:19the slides to you guys
• 01:06:20when you left,
• 01:06:21but we just put down
• 01:06:23some nutrition resources. The American
• 01:06:24Institute for Cancer Research is
• 01:06:26a great resource.
• 01:06:27It has, like, a healthy
• 01:06:28ten challenge,
• 01:06:30which is fun for patients.
• 01:06:32I put some recipe resources,
• 01:06:34cookbooks,
• 01:06:35and then Scott threw in
• 01:06:37some,
• 01:06:38exercise
• 01:06:39resources as well.
• 01:06:42I think that's the last
• 01:06:43slide. Right? I think so.
• 01:06:45Does anybody have any questions?
• 01:06:52Yeah.
• 01:06:55Oh,
• 01:06:56if if you don't eat
• 01:06:57bacon, but maybe once every
• 01:06:59three months, that is that
• 01:07:01okay?
• 01:07:02I get that question all
• 01:07:03the time. So it's really
• 01:07:04it's minimizing
• 01:07:06the risk. Right? So if
• 01:07:08you're eating bacon once every
• 01:07:09three months,
• 01:07:10I'm if that gives you
• 01:07:12quality of life and that
• 01:07:12makes you happy, I'm not
• 01:07:14gonna tell you to stop
• 01:07:15doing that. It's really people
• 01:07:17who it's every morning. It's
• 01:07:18an every other day thing.
• 01:07:19It's an every weekend thing,
• 01:07:21and they don't really like
• 01:07:22the bacon. It's just there.
• 01:07:23They smell it. They wanna
• 01:07:24eat it. Right? But that's
• 01:07:25me kind of giving the
• 01:07:26options. Okay. Could you do
• 01:07:28a vegan bacon? I've tried
• 01:07:29it. It's not very good,
• 01:07:30but some people really like
• 01:07:31it. It's crunchy. It's still
• 01:07:33kinda got the salt flavoring.
• 01:07:34So it's just minimizing risk.
• 01:07:36Right. And,
• 01:07:40with regard to colon cancer,
• 01:07:41I know that's a little
• 01:07:43further down. Yeah. But,
• 01:07:45I've read that red meat
• 01:07:47is really not good
• 01:07:49for the colon. And is
• 01:07:50that something that I should
• 01:07:52avoid?
• 01:07:53Yeah. So the recommendation is
• 01:07:55to limit to under twelve
• 01:07:56ounces of red meat per
• 01:07:57week.
• 01:07:59Generally,
• 01:08:00I tell people to minimize
• 01:08:03as much as they can.
• 01:08:04You know, once a week
• 01:08:05is usually better for cardiac
• 01:08:07health, you know, if you
• 01:08:08have history of cardiovascular disease.
• 01:08:10But, really, the goal is
• 01:08:11to move towards a more
• 01:08:12plant forward diet. I say
• 01:08:13plant forward not meaning vegan.
• 01:08:15You do not have to
• 01:08:16eat all vegan foods and
• 01:08:17only beans and nuts.
• 01:08:19Red meats can absolutely fit.
• 01:08:21Obviously, if your iron is
• 01:08:22low and your weight is
• 01:08:23low, we might incorporate some
• 01:08:25pork or red meat.
• 01:08:26But in general, it's minimizing
• 01:08:29not to exceed the twelve
• 01:08:30ounces per week. So for
• 01:08:31women, that might be three
• 01:08:32servings a week. For men,
• 01:08:34maybe two.
• 01:08:36But pork, beef, and lamb
• 01:08:37are all considered the red
• 01:08:38meat sources.
• 01:08:39So just minimize as much
• 01:08:41as you can not to
• 01:08:42exceed that amount, but I
• 01:08:43would say once a week
• 01:08:43or once every other week
• 01:08:45if you feel like you
• 01:08:45need to keep it in
• 01:08:46the diet. Okay.
• 01:08:48Okay. Thank you. Yeah.
• 01:08:52Anybody else?
• 01:08:59Thank you, Scott and Natalie.
• 01:09:00That's awesome.
• 01:09:01Actually, the reminder for body
• 01:09:03weight exercises is great even
• 01:09:04for
• 01:09:05the caregivers and health care
• 01:09:06providers here because that's pretty
• 01:09:08much all I can do
• 01:09:08at the end of a
• 01:09:09long clinic. But,
• 01:09:12but I think from the
• 01:09:13the other set of questions
• 01:09:15that very often come up
• 01:09:16about
• 01:09:17diet and exercise and lifestyle
• 01:09:19modifications, I think one of
• 01:09:21the challenges we have as
• 01:09:24physicians and scientists in the
• 01:09:25community trying to answer some
• 01:09:27of these questions,
• 01:09:28I'll give you an anecdotal
• 01:09:30story is
• 01:09:31the guys who discovered that
• 01:09:34smoking causes lung cancer, the
• 01:09:35two famous guys called Doll
• 01:09:37and Hill. And it was
• 01:09:38a very simple study. They
• 01:09:39took a bunch of people
• 01:09:40who died from
• 01:09:42different things, and they showed
• 01:09:44that if you smoked, you
• 01:09:45had higher risk of lung
• 01:09:46cancer. And if you didn't
• 01:09:47smoke, you didn't have lung
• 01:09:48cancer. Very simple study. But
• 01:09:50that set the
• 01:09:51this whole precedence because prior
• 01:09:53to this study,
• 01:09:55physicians were advertising that you
• 01:09:56should smoke and this is
• 01:09:57the lifestyle thing. And if
• 01:09:58you remember the old cigarette
• 01:10:00ads and stuff like that.
• 01:10:01Right?
• 01:10:02And Doll and Hill never
• 01:10:03won a Nobel Prize
• 01:10:05Because the problem with a
• 01:10:06lot of these lifestyle things
• 01:10:08is they're all associative.
• 01:10:10There is no way to
• 01:10:12prove that smoking causes lung
• 01:10:14cancer, which the only way
• 01:10:15we can prove things most
• 01:10:16of the time is if
• 01:10:17I take a hundred people
• 01:10:18and tell them to smoke,
• 01:10:19and I take a hundred
• 01:10:20people and tell them not
• 01:10:21to smoke, and then follow
• 01:10:21them up for twenty years
• 01:10:22and see that the hundred
• 01:10:24people that smoke got lung
• 01:10:25cancer, and the hundred people
• 01:10:26that didn't smoke didn't get
• 01:10:27lung cancer. And that's not
• 01:10:28ethical. That's never gonna happen.
• 01:10:30You're never gonna be able
• 01:10:31to do it. And the
• 01:10:32problem with a lot of
• 01:10:33the lifestyle,
• 01:10:34diet
• 01:10:35modifications
• 01:10:36is that we are never
• 01:10:37gonna be able to have
• 01:10:38these randomized studies to be
• 01:10:40able to give you this
• 01:10:41very definitive
• 01:10:42sort of advice of do
• 01:10:43this or don't do this.
• 01:10:44But at the same time,
• 01:10:46now because we have large
• 01:10:47cohort studies where we can
• 01:10:49do some of these associated
• 01:10:50studies, we have
• 01:10:51reasonably strong recommendations of, hey.
• 01:10:54We roughly think that this
• 01:10:56sort of activity is gonna
• 01:10:57have you give you a
• 01:10:58higher likelihood of doing this
• 01:10:59sort of thing, or doing
• 01:11:00this is gonna give you
• 01:11:01a lower likelihood. But it's
• 01:11:03never gonna be a strong
• 01:11:04recommendation, and that's kind of
• 01:11:05why,
• 01:11:07when we from the health
• 01:11:09care team are giving you
• 01:11:10this advice, it's gonna be
• 01:11:11mostly
• 01:11:13like what Natalie said is,
• 01:11:14like, a piece of bacon
• 01:11:15every three months is probably
• 01:11:16not gonna kill you, but
• 01:11:17if you eat it every
• 01:11:17day, you're probably gonna have
• 01:11:18a problem. Right? And it's
• 01:11:20very much likely gonna be
• 01:11:21that sort of advice.
• 01:11:23The converse of that is
• 01:11:24the data that Scott presented
• 01:11:26where the exercise data was
• 01:11:28a randomized trial. We took
• 01:11:29patients,
• 01:11:30gave this group of patients
• 01:11:32structured exercise. This group of
• 01:11:34patients didn't get structured exercise.
• 01:11:36And
• 01:11:36the folks that exercise
• 01:11:38live longer than the folks
• 01:11:40who didn't get exercise. And
• 01:11:41this is very clear. In
• 01:11:42fact, the benefit from exercise
• 01:11:44is more than the benefit
• 01:11:45from chemotherapy.
• 01:11:46Just imagine that. Right? Patients
• 01:11:48who got colon cancer,
• 01:11:50they all got this study
• 01:11:51all got chemotherapy. But if
• 01:11:53you see the if you
• 01:11:54see the trials where patients
• 01:11:55had surgery for colon cancer
• 01:11:57and then got chemo and
• 01:11:58then didn't, and you see
• 01:11:58the amount of benefit the
• 01:11:59chemo gave,
• 01:12:00the amount of benefit that
• 01:12:02the exercise gave was more
• 01:12:04than the benefit that the
• 01:12:05chemo gave. And so that
• 01:12:06gives us a lot of
• 01:12:07evidence, and Scott can now
• 01:12:09go around saying exercise is
• 01:12:10hundred percent gonna work for
• 01:12:12you because we know that
• 01:12:13for sure. Right? But for
• 01:12:14many things, it's very hard
• 01:12:15for us to very make
• 01:12:16these strong recommendations, especially for
• 01:12:18diet and lifestyle modifications because
• 01:12:20it's very hard to randomize
• 01:12:21some of this stuff. But
• 01:12:23as we we go through
• 01:12:25this stuff, this is actually
• 01:12:26the most important part of
• 01:12:28fighting the cancer. It's as
• 01:12:29important as the surgery and
• 01:12:30the radiation. And that's kind
• 01:12:32of where actually having the
• 01:12:33bespoke
• 01:12:34advice for you and not
• 01:12:36just eat a plant based
• 01:12:37diet. And we know that
• 01:12:38maybe with esophageal cancer, you
• 01:12:39can't have the kale salad
• 01:12:40and therefore, actually, having that
• 01:12:42bespoke advice is kind of
• 01:12:43what we're trying to give
• 01:12:44our patients over here.
• 01:12:47Yeah. Just to be clear,
• 01:12:49smoking is bad. Yes. Figure
• 01:12:54out.
• 01:12:56Smoking is bad.
• 01:12:58There's a lot of causal
• 01:13:00inference. You know, the the
• 01:13:01medical oncologists are obsessed with
• 01:13:03clinical trials. We say things
• 01:13:04like, there's never been a
• 01:13:05clinical trial that said a
• 01:13:07parachute will save you a
• 01:13:08lot.
• 01:13:10So smoking, hundred percent.
• 01:13:13Thanks, Ed. He he also
• 01:13:14is a lung surgeon,
• 01:13:16so he it's very important.
• 01:13:18No. But, yes, smoking's bad.
• 01:13:19I've never I never claimed
• 01:13:20that it's not.
• 01:13:22Any other questions for Scott
• 01:13:23and Natalie?
• 01:13:25If not, thank you very
• 01:13:26much. That's really awesome.
• 01:13:31We're gonna move to the
• 01:13:32next and most exciting part
• 01:13:33of the segment of the
• 01:13:35the the session, which is
• 01:13:36gonna be run by doctor
• 01:13:37Deepika Karki and doctor Derek
• 01:13:39Yac. Deepika?
• 01:13:43Deepika, you wanna introduce doctor
• 01:13:45Yac?
• 01:13:52Hi, everyone. It's me again,
• 01:13:54Deepika.
• 01:13:55So with me, I have
• 01:13:56a leading global health expert,
• 01:13:59doctor Yan,
• 01:14:01and we walked on the
• 01:14:02same road. So we thought
• 01:14:04of, like, just doing it
• 01:14:06in a very
• 01:14:07conversational style,
• 01:14:09just sharing what we went
• 01:14:10through,
• 01:14:11how our journey was like,
• 01:14:13and just to give you
• 01:14:14an overview and just answer
• 01:14:16questions you may have for
• 01:14:18us.
• 01:14:19So, doctor Yag, I'll let
• 01:14:20you begin.
• 01:14:22Well, thank you.
• 01:14:23And I think I'll get
• 01:14:25started.
• 01:14:27Working? Great.
• 01:14:28Well, first, what a privilege
• 01:14:30to be here.
• 01:14:32Thank you to your particularly
• 01:14:34doctor Beaufort, doctor Du, wonderful
• 01:14:37to see you.
• 01:14:38And,
• 01:14:40also, it's always a chance
• 01:14:41to show gratitude for the
• 01:14:44incredible,
• 01:14:45support we get here. I
• 01:14:47was looking at the list
• 01:14:48of the huge range of
• 01:14:49people it takes to,
• 01:14:51get us through this.
• 01:14:53And there was only one
• 01:14:54one group missing. I would
• 01:14:56have liked maybe two pages
• 01:14:57of oncology nurses,
• 01:15:00who
• 01:15:01I I became convinced
• 01:15:02were angels,
• 01:15:04to get through all this
• 01:15:05stuff.
• 01:15:06Well,
• 01:15:08I'm not sure,
• 01:15:10where to begin. So I'm
• 01:15:12a
• 01:15:13doctor trained in South Africa.
• 01:15:16I'll explain why that's quite
• 01:15:17interesting. I spent many years
• 01:15:19at the World Health Organization.
• 01:15:21And one of my tasks
• 01:15:22was working on the tobacco
• 01:15:23treaty.
• 01:15:26So very aware that it
• 01:15:27is the largest single preventable
• 01:15:29cause of death in the
• 01:15:30world still today.
• 01:15:31I won't get back into
• 01:15:33that.
• 01:15:34I trained as an epidemiologist,
• 01:15:36and
• 01:15:38spent
• 01:15:39many years in global health,
• 01:15:41looking at cancer trends,
• 01:15:43never realizing that one day
• 01:15:45it will become very personal.
• 01:15:48When I was in South
• 01:15:48Africa,
• 01:15:50one of the programs that
• 01:15:52I was,
• 01:15:53involved with
• 01:15:54was the esophageal cancer program,
• 01:15:57in the eastern part of
• 01:15:58the country, which has some
• 01:16:00of the highest esophageal cancer
• 01:16:02death rates in the world.
• 01:16:03And I then began to
• 01:16:05realize that
• 01:16:06this is a squamous
• 01:16:07cell.
• 01:16:09The belt stretches all the
• 01:16:10way from eastern South Africa
• 01:16:12through,
• 01:16:13the eastern seaboard all the
• 01:16:15way up through,
• 01:16:16to Kenya.
• 01:16:18And to this day,
• 01:16:19the it is the number
• 01:16:21one cause of cancer death
• 01:16:22in Kenya.
• 01:16:24And
• 01:16:27I mention that because I'll
• 01:16:28I'll come back to it
• 01:16:29later.
• 01:16:32So I I I came
• 01:16:33here. I was privileged to
• 01:16:34be at the Yale, School
• 01:16:36of Public Health for a
• 01:16:36number of years before doing
• 01:16:38a whole bunch of other
• 01:16:38things, not realizing I would
• 01:16:40come back as a patient
• 01:16:42several times.
• 01:16:44First for melanoma,
• 01:16:46then for prostate,
• 01:16:48then for esophagus,
• 01:16:49and then fairly minor thing,
• 01:16:52basal cell just two weeks
• 01:16:53ago.
• 01:16:55So I've become a cancer
• 01:16:56textbook,
• 01:16:57and, it gives me a
• 01:16:59chance
• 01:16:59to look at,
• 01:17:01first of all, the value
• 01:17:02of early diagnosis and high
• 01:17:03quality treatment,
• 01:17:05which we are privileged to
• 01:17:06have here, at Yale.
• 01:17:09And secondly, to start reflecting
• 01:17:10on, what is it that
• 01:17:12we could be doing more
• 01:17:13broadly. And, so when I
• 01:17:15was first diagnosed,
• 01:17:18it was obviously a huge
• 01:17:19shock. I thought I just
• 01:17:20had
• 01:17:22a hiatus hernia that my
• 01:17:23father had, and he had
• 01:17:24reflux, and it just seemed
• 01:17:25that was probably it.
• 01:17:28I must also mention that
• 01:17:30I think
• 01:17:31the shop to me was
• 01:17:33big, but I think it
• 01:17:34was even greater to my
• 01:17:35wife, Yasmin.
• 01:17:37And I think we don't
• 01:17:38put up the power of
• 01:17:40carers and loved ones as
• 01:17:41being one of the most
• 01:17:43important support throughout the process.
• 01:17:45But support that
• 01:17:47that also often suffers in
• 01:17:49ways when you ask how
• 01:17:50are you doing, you were
• 01:17:50saying how are you doing,
• 01:17:51I'm sure if you ask
• 01:17:52the carer, they'll say they're
• 01:17:53doing well, but actually they
• 01:17:54may be taking greater strain
• 01:17:56because they have the same
• 01:17:57concerns about recurrence or what's
• 01:17:59coming on or is this
• 01:18:00symptom something related to it.
• 01:18:04I have to say that,
• 01:18:06I don't want to say
• 01:18:06it negatively, but,
• 01:18:09I I was privileged not
• 01:18:11to go through the torture
• 01:18:12with doctor Du.
• 01:18:14I didn't experience
• 01:18:15any of it.
• 01:18:17It was actually for me,
• 01:18:18I hate to say it,
• 01:18:19but quite an amazingly pleasant
• 01:18:21experience coming in, lying in,
• 01:18:22having a very short sleep,
• 01:18:24and out hours again,
• 01:18:26and going through the chemo
• 01:18:28at the same time.
• 01:18:29I do think in retrospect
• 01:18:31that one of the important
• 01:18:32factors
• 01:18:33which you mentioned in the
• 01:18:35exercise program
• 01:18:36was that if you look
• 01:18:37at the exercise literature,
• 01:18:39not yet in the colon
• 01:18:41and esophageal field, but in
• 01:18:42the breast cancer world,
• 01:18:44the evidence on high levels
• 01:18:46of activity while you are
• 01:18:47going through chemo
• 01:18:49seem pretty conclusive
• 01:18:51that you will lower the
• 01:18:52levels of side effects
• 01:18:54and lower the levels of
• 01:18:55remission.
• 01:18:56Now we know in colon
• 01:18:57about remission and survival. We
• 01:19:00haven't yet looked at it
• 01:19:01during chemo. And, of course,
• 01:19:02it's difficult to be doing
• 01:19:03exercise. I'm a swimmer.
• 01:19:05And, one of the first
• 01:19:06things,
• 01:19:07doctor Bofors said to me
• 01:19:09was,
• 01:19:10I'll never forget it.
• 01:19:12And, of course, you know
• 01:19:13you'll never swim again.
• 01:19:15And for me that was
• 01:19:17a big shock. I had
• 01:19:18a I had my last
• 01:19:19swim
• 01:19:20with, friends out in the
• 01:19:22Long Island Sound.
• 01:19:24And,
• 01:19:25and then at the end
• 01:19:26of surgery and chemotherapy,
• 01:19:28I swam around the Statue
• 01:19:30of Liberty,
• 01:19:30as a celebration.
• 01:19:33Now I mention that because
• 01:19:34I'm probably lucky I continue
• 01:19:36to swim, and many people
• 01:19:37would not be able to
• 01:19:37do it. But I mention
• 01:19:38for two reasons. First,
• 01:19:41never forget swimming is a
• 01:19:43also a great alternative
• 01:19:44with muscle strengthening,
• 01:19:46but it also eliminates a
• 01:19:48lot of the gravity issues
• 01:19:50that people face, in doing
• 01:19:51a lot of pounding on
• 01:19:52the streets.
• 01:19:54But secondly, swimming is also
• 01:19:56for me a metaphor of,
• 01:19:58having a goal, something to
• 01:20:01take part in with friends
• 01:20:02and colleagues on the beach.
• 01:20:04And the camaraderie, I think,
• 01:20:05becomes very important.
• 01:20:09And really, I think the
• 01:20:11last,
• 01:20:12it's three years now since
• 01:20:14diagnosis.
• 01:20:15And,
• 01:20:17one of, for me, one
• 01:20:17of the most important things
• 01:20:19was to
• 01:20:20really look at one of
• 01:20:21the elements missing
• 01:20:23in the National Cancer Institute
• 01:20:25survivorship
• 01:20:26list where they talk about,
• 01:20:28issues of physical, mental, social
• 01:20:30well-being. They miss one word.
• 01:20:33And the word is spiritual.
• 01:20:36I think that's something I
• 01:20:37gained a greater
• 01:20:39sense of,
• 01:20:41the importance of the spirit
• 01:20:42and the meaning.
• 01:20:44And
• 01:20:46I started reading,
• 01:20:48several times,
• 01:20:50Viktor Frankl's book,
• 01:20:52on the meaning and purpose
• 01:20:53of life.
• 01:20:54And you'll find in it,
• 01:20:57a quote which he repeats
• 01:20:58several times by Nietzsche, which
• 01:21:00is that, if
• 01:21:01if you know the why
• 01:21:03of your life, you can
• 01:21:05overcome almost any how.
• 01:21:08And he went on to
• 01:21:10become one of the great
• 01:21:11therapists,
• 01:21:13after leaving Auschwitz and surviving,
• 01:21:17To apply his idea about
• 01:21:18the importance of meaning
• 01:21:20in developing
• 01:21:22a purpose in life for
• 01:21:23cancer patients.
• 01:21:25And recorded over the years
• 01:21:27before he died,
• 01:21:28how you can have two
• 01:21:30cancer patients,
• 01:21:32exactly the same diagnostic criteria.
• 01:21:35They may only differ in
• 01:21:36terms of having a sense
• 01:21:37of what they wanted to
• 01:21:38live for.
• 01:21:40And it could be something
• 01:21:41as
• 01:21:43intimate and personal as your
• 01:21:44loved one, Or it could
• 01:21:46be some big meaning in
• 01:21:47life. And,
• 01:21:49I think about that a
• 01:21:50lot and the privilege that
• 01:21:51I went through to go
• 01:21:52through therapy that I know
• 01:21:53my brothers and sisters in
• 01:21:55Africa just don't have access
• 01:21:56to. They have virtually
• 01:21:58no diagnostic capability, no treatment
• 01:22:00capability and so on. And
• 01:22:02so while my initial,
• 01:22:05why was certainly related
• 01:22:08to my wife, my son,
• 01:22:09hoping to make it to
• 01:22:10his graduation, which I didn't
• 01:22:12actually think I was going
• 01:22:13to do because
• 01:22:15the first diagnosis you think,
• 01:22:16you look at the data
• 01:22:17and you think, oh, my
• 01:22:17God, that's it. Well, he's
• 01:22:19graduating next month. So
• 01:22:21that's one that's ticked off.
• 01:22:25And now I think I
• 01:22:26turn to the second part
• 01:22:28of one's life. And
• 01:22:30one of the great
• 01:22:32rabbis of the twelfth century,
• 01:22:34Hillel, said,
• 01:22:36if I'm not for me,
• 01:22:37who is for me? You
• 01:22:38may know the quote.
• 01:22:39But he went on to
• 01:22:40ask the next question, and
• 01:22:42if I'm only for me,
• 01:22:44what am
• 01:22:45I? And I interpret that
• 01:22:46as being
• 01:22:48that I've been lucky enough
• 01:22:49to come through. Now how
• 01:22:50do I take this? And
• 01:22:52with Deepika and I, I
• 01:22:53know we both share the
• 01:22:54need and the desire to
• 01:22:55make sure that people who
• 01:22:57don't have a Yale access
• 01:22:59can actually have access to
• 01:23:01better quality cancer care.
• 01:23:03And I've been in Kenya
• 01:23:05recently at a cancer center
• 01:23:06where
• 01:23:08the only treatment of people
• 01:23:10with, esophageal cancer
• 01:23:12is a surgical stent to
• 01:23:14keep the ability to swallow
• 01:23:16and chemotherapy
• 01:23:18supported by real oncology nurse
• 01:23:21angels.
• 01:23:22And that's not the way
• 01:23:23it should be.
• 01:23:24If we think of the
• 01:23:25progress we made in AIDS,
• 01:23:27we used to say that
• 01:23:28we would never be able
• 01:23:28to apply these complex treatments
• 01:23:30across Africa. They would never
• 01:23:31be able to handle it.
• 01:23:32Well, they do. And millions
• 01:23:34are living because of it.
• 01:23:35I hope and I know
• 01:23:36that we share this. We
• 01:23:38want to make sure that
• 01:23:39it's not just us who
• 01:23:41benefit, but it's our brothers
• 01:23:42and sisters
• 01:23:44elsewhere. Thanks.
• 01:23:51Well, it's pretty hard to
• 01:23:52follow with amazing words that
• 01:23:54doctor Yaj said.
• 01:23:56So I am Deepika Karki.
• 01:23:58I'm also a medically
• 01:24:00trained doctor. I trained far
• 01:24:01away
• 01:24:02in Nepal,
• 01:24:03the land of Himalayas.
• 01:24:06And talking about my country,
• 01:24:08it's blessed with wonderful mountains,
• 01:24:10but
• 01:24:11we still struggle for basic
• 01:24:14health services.
• 01:24:15And, when I was diagnosed
• 01:24:17I was diagnosed when I
• 01:24:18was twenty five. This is
• 01:24:20my fifth year,
• 01:24:23anniversary
• 01:24:24of beating cancer.
• 01:24:26And when I was diagnosed,
• 01:24:27I was so young
• 01:24:29that,
• 01:24:30when I went for the
• 01:24:31endoscopy, it was just
• 01:24:34assuming that I just had
• 01:24:35a very bad episode of
• 01:24:36gastritis
• 01:24:37because I was just starting
• 01:24:39my intern year.
• 01:24:40And the people who scoped
• 01:24:41me were, like, all residents,
• 01:24:43and they were just like,
• 01:24:44we're not gonna find anything.
• 01:24:45You know, you're just not
• 01:24:46eating right. But when they
• 01:24:48put the scope in, like,
• 01:24:49they were all, you know,
• 01:24:50oh my god.
• 01:24:52And I distinctly remember my
• 01:24:54father walking in and them
• 01:24:56saying,
• 01:24:57you take a day off.
• 01:24:58You just go and rest.
• 01:25:00And I was happy to
• 01:25:01get a day off. And
• 01:25:02just like I I rushed
• 01:25:03to my boyfriend, now husband.
• 01:25:05Was just like, oh, I
• 01:25:06got a day off. Like,
• 01:25:07they just did an endoscopy.
• 01:25:09My father was crying the
• 01:25:10whole weekend, not letting me
• 01:25:12know
• 01:25:13what they told him. I
• 01:25:14didn't know until I underwent
• 01:25:17a CT scan
• 01:25:19that
• 01:25:20was followed by the pathology
• 01:25:22reports with which showed squamous,
• 01:25:25cancer.
• 01:25:26And they put me on
• 01:25:27chemotherapy
• 01:25:28rather quick
• 01:25:30because,
• 01:25:31because I was blessed, and
• 01:25:32my father was in the
• 01:25:33medical field too. And me
• 01:25:35myself was a doctor in
• 01:25:37training so I could get
• 01:25:38my treatment quick.
• 01:25:40But Nepal,
• 01:25:41we didn't even have PET
• 01:25:43scan, so there was nothing
• 01:25:44that could even help me
• 01:25:47see the extent
• 01:25:48to which the cancer was
• 01:25:49eating my body.
• 01:25:51So I had to travel
• 01:25:52to India.
• 01:25:54I went there. It was
• 01:25:55around the time of the
• 01:25:56second wave of COVID.
• 01:25:58So we went there. We
• 01:26:00stayed there for
• 01:26:01over a month
• 01:26:03where I where I,
• 01:26:05did up did my PET
• 01:26:06scan,
• 01:26:07underwent radiation therapy, very bad
• 01:26:10experience, by the way. I
• 01:26:11had to get admitted thrice
• 01:26:13because I couldn't swallow.
• 01:26:15It was this burning pain
• 01:26:17from my throat all the
• 01:26:18way to my stomach,
• 01:26:20and I love to eat.
• 01:26:21Like, I love my
• 01:26:23rice, lentils, chicken.
• 01:26:25Like, I love my food.
• 01:26:26I couldn't eat.
• 01:26:28And then when I when
• 01:26:29I went to India, I
• 01:26:30was just this girl who
• 01:26:31had never
• 01:26:33traveled outside of Nepal,
• 01:26:35just happy to be on
• 01:26:36that first international
• 01:26:38flight.
• 01:26:39But when I came back,
• 01:26:40I was a girl with
• 01:26:42no hair
• 01:26:43who couldn't even, like, swallow
• 01:26:45a sip of water,
• 01:26:46who just desperately
• 01:26:48wanted to look pretty. And
• 01:26:50my grandmother used all of
• 01:26:52her savings to buy me
• 01:26:53the best wig in town.
• 01:26:55It was this plastic wig,
• 01:26:56but it made me look
• 01:26:58pretty.
• 01:26:59And I came back,
• 01:27:00and I couldn't even go
• 01:27:02back to get my surgery
• 01:27:04done in India because I
• 01:27:05was so,
• 01:27:07like, in shock from the
• 01:27:08radiation
• 01:27:10because it was so painful
• 01:27:11the first time around. I
• 01:27:12couldn't go back. So
• 01:27:14I got operated back in
• 01:27:16Nepal by amazing doctors.
• 01:27:18And after my surgery,
• 01:27:20I remember speaking to my
• 01:27:22doctor
• 01:27:23the next day after my
• 01:27:24surgery saying thank you.
• 01:27:26But then after that, when
• 01:27:28I started speaking again, I
• 01:27:29developed this hoarse voice. So
• 01:27:31my voice has never been
• 01:27:32the same since.
• 01:27:35So after my surgery,
• 01:27:37the first,
• 01:27:38meal that I could have
• 01:27:39was literally just one spoon
• 01:27:41of,
• 01:27:43milk pudding.
• 01:27:44And I was broken because
• 01:27:46I love to eat. So
• 01:27:47I was just, oh my
• 01:27:48god. So what I'll never
• 01:27:49be able to have that
• 01:27:50slice of pizza or, you
• 01:27:52know, a plate full of
• 01:27:53my, like, rice and lentils
• 01:27:55again?
• 01:27:56But, like, fast forward now,
• 01:27:58I can eat as much
• 01:27:59as I want, like, how
• 01:28:00much I want. So I
• 01:28:01love that, you know, it
• 01:28:03got better.
• 01:28:04And in terms of physical
• 01:28:05therapy,
• 01:28:06I love to work out.
• 01:28:08I love to lift.
• 01:28:09So, like, I I couldn't
• 01:28:11do anything back then, of
• 01:28:12course.
• 01:28:13But now I can lift
• 01:28:15almost my body weight.
• 01:28:16I so I think, yeah,
• 01:28:17there's progress there.
• 01:28:19But as doctor Yatch was
• 01:28:21saying, like,
• 01:28:23so, yeah, after my training,
• 01:28:24I came here. I'm working
• 01:28:25as a researcher at the
• 01:28:26Mayo Clinic
• 01:28:28down in Jacksonville,
• 01:28:29and I got my
• 01:28:31follow-up,
• 01:28:32endoscopy done, like, a month
• 01:28:35back. I got follow-up CT
• 01:28:37scan done a month back
• 01:28:38at Mayo, and everything looks
• 01:28:40clean.
• 01:28:41And I'm happy, like, for
• 01:28:43me, my family, everywhere, everyone.
• 01:28:46But what really breaks my
• 01:28:47heart is to think of
• 01:28:49people back home.
• 01:28:51Because after my
• 01:28:52diagnosis
• 01:28:53and after my surgery,
• 01:28:56I realized the need to
• 01:28:58connect with people who didn't
• 01:28:59have
• 01:29:00the facilities
• 01:29:02and the resources as I
• 01:29:03was privileged with.
• 01:29:05So I opened an online
• 01:29:08website, Nepal Can Chat, where
• 01:29:10I connect with fellow
• 01:29:12Nepalese cancer survivors who are
• 01:29:14on the same journey as
• 01:29:15myself.
• 01:29:16I talk to them. I
• 01:29:18share with them my journey,
• 01:29:19like, just sharing with them
• 01:29:22the steps of care that
• 01:29:23I got, like, the places
• 01:29:24that I went to for
• 01:29:26my PET scan or my
• 01:29:27surgery or my chemo, my
• 01:29:29radiation, and just talking about
• 01:29:31them, about the basics
• 01:29:34gives them hope.
• 01:29:35You know? And that really
• 01:29:37makes me happy, and that
• 01:29:39really makes me feel like
• 01:29:40I'm making a difference.
• 01:29:42And,
• 01:29:43I talk to people and,
• 01:29:45you know, just just small
• 01:29:47things. Like, for example, I
• 01:29:48was talking to this patient
• 01:29:49the other day who said
• 01:29:51that she went to a
• 01:29:52doctor saying she felt like
• 01:29:54there was something on her
• 01:29:55throat and, like, they just
• 01:29:56did, like, a basic thyroid
• 01:29:58panel because, you know, there's
• 01:29:59a lot of things on
• 01:30:00our throat. But everything was
• 01:30:02clean and, like, they did
• 01:30:03nothing.
• 01:30:04And now they finally scoped
• 01:30:06her,
• 01:30:07and she's in her, like,
• 01:30:08stage two. They diagnosed her
• 01:30:09with stage two. So, you
• 01:30:11know, if only she had
• 01:30:12been scoped earlier,
• 01:30:14that would have made a
• 01:30:15huge difference.
• 01:30:17And, you know, it's things
• 01:30:18like that that really
• 01:30:19makes me feel like there's
• 01:30:21so much to be done,
• 01:30:23and we're privileged here. Like,
• 01:30:25I'm I'm assuming that all
• 01:30:27of you got your
• 01:30:28therapy here at Yale, which
• 01:30:29is one of the leading
• 01:30:30cancer centers, and I was
• 01:30:33privileged enough to get my
• 01:30:34follow-up scans at Mayo. But
• 01:30:36people there in those low
• 01:30:38and middle income countries
• 01:30:40are really struggling with, like,
• 01:30:42the first step,
• 01:30:43just knowing the diagnosis.
• 01:30:46So I think that's what,
• 01:30:47you know, doctor Ipiaj and
• 01:30:49I, like,
• 01:30:51really aspire to
• 01:30:52help with.
• 01:30:53And, we're writing actually a
• 01:30:55piece on chemo parts, and
• 01:30:57that's something that I'm really
• 01:30:59excited about to share.
• 01:31:01But, yeah, I think, like,
• 01:31:02here, everything is moving at
• 01:31:04such a fast pace where
• 01:31:05we have, like, people, like,
• 01:31:07dedicated
• 01:31:08nutritionists,
• 01:31:09like, physical therapists coming here
• 01:31:11and guiding us, talking about
• 01:31:13short term and short term
• 01:31:15and long term
• 01:31:16survivorship. But over there, it's
• 01:31:19survivorship is just like, you
• 01:31:20know, something out of the
• 01:31:22picture.
• 01:31:23You know? Just being scoped,
• 01:31:24just having the first test
• 01:31:26is something that people are
• 01:31:28struggling with. So, yes, the
• 01:31:30world is changing, but
• 01:31:32it's, I think,
• 01:31:33like,
• 01:31:34it it it should be
• 01:31:35changing everywhere
• 01:31:37and not just, you know,
• 01:31:38just at a very fast
• 01:31:39pace somewhere and just at
• 01:31:41a very slow pace somewhere,
• 01:31:42but I think we're definitely
• 01:31:44making progress.
• 01:31:45And to add to, like,
• 01:31:47the silent survivors
• 01:31:49who are definitely our family,
• 01:31:51my amazing husband is here
• 01:31:53in the audience.
• 01:31:54We dated for eleven years.
• 01:31:56And when I was diagnosed,
• 01:31:58he could have just said,
• 01:32:00I don't wanna be with
• 01:32:01you anymore because who would
• 01:32:02want this luggage?
• 01:32:04But he married me and
• 01:32:06we're happily married. It it
• 01:32:07will be our thirtieth anniversary
• 01:32:09this year.
• 01:32:10And just having his support
• 01:32:12means so much to me
• 01:32:14and my amazing friend, Missy.
• 01:32:16Like, I just can't thank
• 01:32:18you enough. And my parents
• 01:32:20back home
• 01:32:21who, like, missed their daughter
• 01:32:23who's here struggling,
• 01:32:24you know, to find her
• 01:32:26stand here in a foreign
• 01:32:27land,
• 01:32:28but also
• 01:32:29thinking about me every day
• 01:32:31because they have seen,
• 01:32:33like, the days when I
• 01:32:35had my first hair fall,
• 01:32:37the days when I couldn't
• 01:32:38swallow a sip of water
• 01:32:40to be, you know, figuring
• 01:32:42it all out today
• 01:32:43just makes me really happy,
• 01:32:45and,
• 01:32:46we all can do it.
• 01:32:48I know it's us,
• 01:32:49like, under who are undergoing
• 01:32:51we underwent
• 01:32:52chemo, radiation,
• 01:32:54surgery, everything, but it's our
• 01:32:55family who are actually fighting
• 01:32:56that silent battle. And thank
• 01:32:56you so much everyone
• 01:32:57fighting that silent battle.
• 01:32:59And thank you so much
• 01:33:01everyone for showing up.
• 01:33:10Thank you, Deepika and Derek.
• 01:33:11That was really,
• 01:33:12hard rendering.
• 01:33:15I'm gonna open this up
• 01:33:16for opportunity to
• 01:33:18ask,
• 01:33:20Deepika or any any one
• 01:33:22of us questions. But, also,
• 01:33:23if there's anyone in the
• 01:33:24audience who wants to share
• 01:33:25some of their journeys, please
• 01:33:27take this.
• 01:33:36Oh, I know. Gotta do
• 01:33:37so. Stop to speak. Oh,
• 01:33:39okay.
• 01:33:40Several people have made references
• 01:33:42to high incidence
• 01:33:43of this type of cancer,
• 01:33:45I believe, in Africa
• 01:33:47and other areas. Do they
• 01:33:49know why?
• 01:33:53I don't know if you
• 01:33:54want me to just give
• 01:33:55a comment on on Africa.
• 01:33:56I mean, I so,
• 01:33:59it's squamous
• 01:34:00cell.
• 01:34:01So it's, I had I
• 01:34:03had no You had squamous
• 01:34:04as well. So in the
• 01:34:05case of squamous cell,
• 01:34:08the the major theories are
• 01:34:09a combination of alcohol, tobacco,
• 01:34:12hot drinks, which is interesting.
• 01:34:13And we're talking about drinking
• 01:34:15drinks at very hot temperature.
• 01:34:16I mean, very high temperatures.
• 01:34:18And then there are a
• 01:34:19range of fungal contaminants,
• 01:34:21that ground some of the
• 01:34:22foods.
• 01:34:23Those are some of the
• 01:34:25major ones.
• 01:34:26I think there's another,
• 01:34:28aspect. We don't fully know
• 01:34:31the full epidemiology and causes
• 01:34:33in many of the countries
• 01:34:35because the the level of
• 01:34:36research support
• 01:34:37is nowhere
• 01:34:39near, say, many of the
• 01:34:40other major cancers.
• 01:34:45But to add to some
• 01:34:46of the stories about the
• 01:34:48disparities that we're seeing in
• 01:34:49different parts of the world,
• 01:34:50the truth is that these
• 01:34:51disparities in different parts of
• 01:34:53the world also exist within
• 01:34:54our our communities and even
• 01:34:56with folks here. Not everyone
• 01:34:58here is actually getting the
• 01:34:59same access to care, and
• 01:35:00that's a large part of
• 01:35:01the work we are trying
• 01:35:02to do is making sure
• 01:35:03we try to get equal
• 01:35:04access to care for every
• 01:35:06different thing from early diagnosis,
• 01:35:07which is a very important
• 01:35:09component to it to making
• 01:35:10sure you have,
• 01:35:11adequate
• 01:35:13access to the different components
• 01:35:15of the care that you
• 01:35:15need to get, to then,
• 01:35:17of course, the higher end
• 01:35:18stuff with the newer drugs
• 01:35:19and the newer technology that's
• 01:35:21changing the the landscape.
• 01:35:23Every every aspect of this
• 01:35:25is important, and different
• 01:35:27folks are in in this
• 01:35:28group are paying attention to
• 01:35:29these different parts of
• 01:35:31getting access to the different
• 01:35:33aspects of
• 01:35:34very complicated treatment here.
• 01:35:44We're just following up on
• 01:35:45on that comment.
• 01:35:46I don't know if you
• 01:35:47have anything to say about
• 01:35:48the rural urban,
• 01:35:50divide, especially in this country,
• 01:35:52but but worldwide. But I
• 01:35:54think that's something that's increasingly
• 01:35:55coming to light, here in
• 01:35:57America is a differential.
• 01:36:03Certainly. I mean, I think
• 01:36:04the rural urban divide is
• 01:36:05always gonna be there. Folks
• 01:36:07in rural spaces are gonna
• 01:36:08have to travel longer
• 01:36:10further to get to centers
• 01:36:12of coordinated care. And that,
• 01:36:14I think, is gonna be
• 01:36:16a problem that's not easily
• 01:36:17solved simply because
• 01:36:19you kind of to have
• 01:36:21different people with different sorts
• 01:36:22of expertise coming to one
• 01:36:23place to work together, you
• 01:36:24kind of geographically have to
• 01:36:26be there. But in a
• 01:36:27rural area where you have
• 01:36:29to then travel large distances
• 01:36:30to get there, sure, telehealth
• 01:36:32and those sort of things
• 01:36:33will address some of these
• 01:36:34issues. But it's gonna be
• 01:36:35a it's gonna be a
• 01:36:36mixture of trying to address,
• 01:36:40getting to the community and
• 01:36:41having outreach there, which
• 01:36:43folks are trying. But that
• 01:36:45will then dilute the expertise
• 01:36:47with bringing folks down here.
• 01:36:49And at least at Yale,
• 01:36:50we've kind of tried to
• 01:36:51balance that out where places
• 01:36:53of highly complex surgeries are
• 01:36:55often done here or very
• 01:36:56few places in New Haven.
• 01:36:58But we try to give
• 01:36:59our chemotherapies
• 01:37:00and systemic therapies out into
• 01:37:01the community where we're trying
• 01:37:03to get it easier. If
• 01:37:04you have to come every
• 01:37:05week for treatment, you don't
• 01:37:05have to travel in into
• 01:37:07New Haven and find parking
• 01:37:08in there. Right? But but
• 01:37:10for big surgeries and for
• 01:37:11complex care, you kind of
• 01:37:12need to come to center
• 01:37:13of excellence. So that's kind
• 01:37:15of the way we're trying
• 01:37:15to balance some of these
• 01:37:16things out. There's no simple
• 01:37:18answer, I'm sure. But yeah.
• 01:37:20Yeah. So
• 01:37:21I work with the commission
• 01:37:22on cancer, which is
• 01:37:25the biggest cancer organization,
• 01:37:27United States, and and that's
• 01:37:29front and center of of
• 01:37:32our concern. And because places
• 01:37:34are closing down and there's
• 01:37:36the access to
• 01:37:38even base providers is becoming
• 01:37:39more and more limited. And
• 01:37:40so I think there's a
• 01:37:41real push to try to
• 01:37:43have
• 01:37:44relationships between smaller hospitals and
• 01:37:47bigger hospitals so that they
• 01:37:49can have a single standard
• 01:37:50of care and have clinicians
• 01:37:52that move throughout a network.
• 01:37:54And
• 01:37:55there's some evidence that patients
• 01:37:57that that do travel actually
• 01:37:59experience better outcomes. So trying
• 01:38:00to decide what care is
• 01:38:02appropriate for what care environment,
• 01:38:05but it is and
• 01:38:07not to be political, it
• 01:38:09is actually
• 01:38:10one of the health things
• 01:38:12that seems to have bipartisan
• 01:38:14support right now is improving
• 01:38:16the fate of the of
• 01:38:17the rural population
• 01:38:19in terms of health care.
• 01:38:26I just also very keen
• 01:38:27to have other people's views
• 01:38:29in Deepika as well on
• 01:38:30on something as we we
• 01:38:31we were starting to talk
• 01:38:32about,
• 01:38:34once you've completed treatment and
• 01:38:36you,
• 01:38:37into
• 01:38:38our survival mode or patient
• 01:38:40expert load. The word often
• 01:38:42is
• 01:38:43a bit, difficult to think
• 01:38:44what's the best word for
• 01:38:45it.
• 01:38:46But I just wonder how
• 01:38:47common many of you experience
• 01:38:49long term side effects or
• 01:38:50permanent side effects.
• 01:38:52And,
• 01:38:53I I, I mean, the
• 01:38:54two that, I've I've certainly
• 01:38:56experienced is peripheral neuropathy.
• 01:38:58And I think that was
• 01:38:59the platinum base of my
• 01:39:01chemotherapy.
• 01:39:03There were benefits to me.
• 01:39:04I'm a cold water swimmer,
• 01:39:05so I couldn't feel the
• 01:39:06ice on the bottom of
• 01:39:07my feet in the swimming.
• 01:39:09So there actually was a
• 01:39:10nice benefit, but,
• 01:39:11and I think all of
• 01:39:12you going through
• 01:39:14any platinum therapy will will
• 01:39:15remember those
• 01:39:17incredible
• 01:39:18shocks of ice and cold
• 01:39:19water and the gloves and
• 01:39:20all that. But I'd love
• 01:39:22to hear whether we have
• 01:39:23any greater insights into
• 01:39:25the long term,
• 01:39:27ways that we might reduce
• 01:39:28it. And the second is
• 01:39:30pneumonitis, which,
• 01:39:32can come and go and
• 01:39:32it can be caused by
• 01:39:34lots of other things. But
• 01:39:35just a love since, many
• 01:39:37of you have been through
• 01:39:38this and to get a
• 01:39:39sense of, you know, is
• 01:39:40this are these issues that
• 01:39:41affected you?
• 01:39:43Affect you.
• 01:39:49I mean, for me,
• 01:39:52as evident as it is
• 01:39:53my voice, which was, like,
• 01:39:55the sourness of voice which
• 01:39:56I had after my surgery.
• 01:39:58And the second thing that
• 01:39:59I have is, like, this
• 01:40:00late dumping syndrome.
• 01:40:02Like, I keep having these
• 01:40:04episodes of hypoglycemia.
• 01:40:06And I don't know if
• 01:40:07it's common for everyone, but
• 01:40:09I don't feel hunger anymore.
• 01:40:11I'm never hungry.
• 01:40:13So it's not that feeling
• 01:40:14of hunger. And I have
• 01:40:15forgotten what feeling hungry feels
• 01:40:17like. So I just eat
• 01:40:18because, you know, like, I
• 01:40:20have to eat at a
• 01:40:20particular time. And sometimes if
• 01:40:22I forget, like, and I
• 01:40:24skip a meal, then I
• 01:40:25just go into this severe
• 01:40:26hypoglycemic
• 01:40:27episode where I can feel
• 01:40:29my heart pounding, and I
• 01:40:30just need to get something
• 01:40:31really quick to eat. So
• 01:40:33I think that is something
• 01:40:34that
• 01:40:35is really concerning for myself.
• 01:40:37So if you could
• 01:40:39I'm gonna give it to
• 01:40:40Scout and Natalie for this.
• 01:40:41Do you want me to
• 01:40:42start or you to start?
• 01:40:44Well, I'll, yeah, I'll start
• 01:40:45with the the neuropathy question.
• 01:40:48Yeah. Neuropathy is a is
• 01:40:49a maddening side effect because
• 01:40:51there's no perfect cure for
• 01:40:53it.
• 01:40:55My approach to neuropathy is
• 01:40:57actually a multimodal,
• 01:40:59approach.
• 01:41:00I'm actually a big proponent
• 01:41:02of soft tissue massage
• 01:41:04to your feet
• 01:41:06to try to and, obviously,
• 01:41:07we know that it's, you
• 01:41:09know, like, we know that
• 01:41:09it's nerve and it's not
• 01:41:11vascular, but just the act
• 01:41:13of giving yourself a deep
• 01:41:14tissue massage
• 01:41:15does increase
• 01:41:16blood flow to the area.
• 01:41:18It's helping with mitochondrial,
• 01:41:20turnover. And
• 01:41:21and also to
• 01:41:23especially if you have neuropathy
• 01:41:24in your fingers as well
• 01:41:26as your feet, you're giving
• 01:41:27yourself that input
• 01:41:29that you need. And sometimes
• 01:41:32what I will recommend to
• 01:41:33my patients, you know, if
• 01:41:34their caregiver will buy into
• 01:41:36it is to say, have
• 01:41:37the caregiver
• 01:41:39give your feet a massage,
• 01:41:41and you
• 01:41:42close your eyes.
• 01:41:44Because if you take your
• 01:41:45vision out of it, then
• 01:41:47you can see
• 01:41:48or you can't see, and
• 01:41:50so you have to feel
• 01:41:52more.
• 01:41:52Where do you have sensation?
• 01:41:54Do you have sensation
• 01:41:56on your heel when you
• 01:41:57start to lose it in
• 01:41:58the middle of your foot?
• 01:41:59Or do you have sensation
• 01:42:00in the the middle of
• 01:42:01your foot and you start
• 01:42:02to lose it around the
• 01:42:04balls of your feet?
• 01:42:06And so I will have
• 01:42:07my patients do that as,
• 01:42:08like, a warm up. And
• 01:42:09then when I get you
• 01:42:10in clinic, in my PT
• 01:42:11clinic, I'm throwing everything at
• 01:42:13you. I am putting you
• 01:42:15on the the AirX on
• 01:42:16our, on an AirX balance
• 01:42:18pad, and I am having
• 01:42:20you do single leg stance.
• 01:42:21And I am also throwing
• 01:42:22a ball at you, and
• 01:42:23I'm asking you questions.
• 01:42:26And, again, I'm gonna have
• 01:42:28you do that with your
• 01:42:29eyes open and with your
• 01:42:30eyes closed
• 01:42:31to challenge those nerves
• 01:42:34to wake back up.
• 01:42:36So
• 01:42:37that's my approach.
• 01:42:38I'm also a big proponent
• 01:42:39of acupuncture.
• 01:42:42So I'm very much of
• 01:42:44the nonpharmacological,
• 01:42:45noninvasive approach.
• 01:42:47So
• 01:42:48those are my my takes
• 01:42:50on on neuropathy.
• 01:42:52Textured stuff. Don't you do,
• 01:42:53like, a texture? I do
• 01:42:54some I do some texture
• 01:42:55stuff too. She she's such
• 01:42:56a good work wife.
• 01:42:58She reminds me all all
• 01:42:59yes. I appreciate that.
• 01:43:02Again, especially, like, again, for
• 01:43:03the hands, like, if you've
• 01:43:04got neuropathy in the hands.
• 01:43:07And this is a great
• 01:43:08game if you've got little
• 01:43:09kids or you got grandkids.
• 01:43:11Get a bucket of top
• 01:43:13like, a Tupperware,
• 01:43:15and fill it with lentil
• 01:43:17beans.
• 01:43:19And then,
• 01:43:20especially if you wanna make
• 01:43:21it into a game, you
• 01:43:22put ten marbles in there
• 01:43:24or you put ten pennies
• 01:43:26in there.
• 01:43:27Again, you need to go
• 01:43:28and you need to find
• 01:43:29the pennies, and you are
• 01:43:30relying on sensation and you
• 01:43:32can't see them. So, again,
• 01:43:33you're challenging proprioception
• 01:43:37and you do it and
• 01:43:38you have your grandkid time
• 01:43:39you to see how long
• 01:43:40it takes you to do
• 01:43:41that. And it's like, okay,
• 01:43:42grandpa, it took you twenty,
• 01:43:44you know, a minute and
• 01:43:45twenty five seconds to do
• 01:43:46that. And then you switch
• 01:43:48that they do it and
• 01:43:49you time them. Now your
• 01:43:51therapy has become a game.
• 01:43:55Yeah. He's pretty cool. Alright.
• 01:43:57So the dumping
• 01:43:58syndrome. So, obviously well, not
• 01:44:00obviously, but there's early dumping,
• 01:44:02and then there's late dumping.
• 01:44:03Usually, early dumping is, like,
• 01:44:05within thirty to sixty minutes
• 01:44:07after eating, and then late
• 01:44:08dumping could be two hours,
• 01:44:09three hours after eating.
• 01:44:12For these types of issues,
• 01:44:14a lot of times, like,
• 01:44:15main recommendations that I make
• 01:44:17is small frequent meals like
• 01:44:19you're doing. Right? So you
• 01:44:20don't a lot of people
• 01:44:21don't feel hunger. That's very
• 01:44:22common.
• 01:44:23So it's eating around the
• 01:44:24clock. It's trying to eat
• 01:44:25small portions every three hours
• 01:44:27to regulate blood sugar control.
• 01:44:30It's not drinking liquids with
• 01:44:32food.
• 01:44:33If you think of, like,
• 01:44:34a water slide, if you
• 01:44:35if you go down a
• 01:44:36water slide with water, you're
• 01:44:37gonna go a lot faster.
• 01:44:37Right? So, if you can
• 01:44:39separate liquids and solids, it
• 01:44:41does help to slow down
• 01:44:42the digestion a bit,
• 01:44:44because the dumping is really
• 01:44:46the food is moving very,
• 01:44:47very quickly from the stomach
• 01:44:48to the to the intestine.
• 01:44:50And that rate that it's
• 01:44:51moving through, it's causing an
• 01:44:52influx with, you know, liquids
• 01:44:54and a change in electrolytes.
• 01:44:56So there's a lot of
• 01:44:57things happening. So one is
• 01:44:59small frequent meals. Two is
• 01:45:01separating liquids and solids.
• 01:45:03Three is minimizing
• 01:45:05or avoiding
• 01:45:06simple sugar, so, like, juices,
• 01:45:08sodas,
• 01:45:09lots of candy pastries
• 01:45:11because that influx of sugar
• 01:45:14causes more of those symptoms.
• 01:45:15You might feel really lethargic,
• 01:45:17tired, like you have to
• 01:45:18lay down, you have the
• 01:45:18sweats. That's usually because you
• 01:45:20went out for an ice
• 01:45:21cream cone, you know, with
• 01:45:22your kids. You ate too
• 01:45:23fast, and then you have
• 01:45:24those symptoms. So what I
• 01:45:26say is you don't have
• 01:45:27to avoid those things, but
• 01:45:28if you can pair the
• 01:45:29ice cream or a small
• 01:45:31portion of a sweet
• 01:45:32with, like, a fiber rich
• 01:45:34food, like, a it's complicated.
• 01:45:36Soluble fiber is like a
• 01:45:37softening fiber. If you can
• 01:45:39pair those things together, it
• 01:45:40helps to slow down the
• 01:45:41absorption of the sugar,
• 01:45:43and can really help the
• 01:45:44symptoms.
• 01:45:46You can lay down for
• 01:45:47fifteen minutes after eating to
• 01:45:49kind of, like,
• 01:45:50not make gravity work against
• 01:45:52you. So some people find
• 01:45:54that when they lay back
• 01:45:55or just relax on the
• 01:45:56couch for ten to fifteen
• 01:45:57minutes after eating
• 01:45:58a small portion, obviously, not
• 01:46:00laying flat, but that could
• 01:46:01help to slow down the
• 01:46:02rate of the digestion too.
• 01:46:04So lots of tips and
• 01:46:05tricks, lots of, like,
• 01:46:07fiber kind of, things we
• 01:46:09can do. Like, if you
• 01:46:10don't eat a diet rich
• 01:46:11in soluble fiber, which is
• 01:46:12found in, like, oatmeal,
• 01:46:14beans, pumpkin puree,
• 01:46:16that kind of thing, we
• 01:46:17can use, like, psyllium fiber
• 01:46:18husk, and we can use,
• 01:46:19like, Metamucil wafers before meals
• 01:46:22to try to slow down
• 01:46:23the rate of digestion. So
• 01:46:24lots of things to try,
• 01:46:26but combinations of things help.
• 01:46:28Thank you.
• 01:46:30Thanks, Natalie. Kevin. Okay. Just
• 01:46:32tell one one thought about
• 01:46:34all these supportive
• 01:46:36care things, which is very
• 01:46:37important, I think, in terms
• 01:46:39of,
• 01:46:40survivorship and and the burden
• 01:46:42of of, of cancer.
• 01:46:45You know, acupuncture and massage
• 01:46:47cost money and many times,
• 01:46:50not covered by insurance.
• 01:46:52It's actually one of the
• 01:46:53I just wanted to highlight
• 01:46:54because this is one of
• 01:46:55the really nice things about
• 01:46:57my cancer center at Park
• 01:46:58Avenue Medical Center, which is
• 01:47:00because of philanthropic
• 01:47:02support and, the support of
• 01:47:04the community, actually,
• 01:47:06through donors.
• 01:47:07We can provide
• 01:47:09things like acupuncture to our
• 01:47:10patients,
• 01:47:11covered,
• 01:47:12for two years, even two
• 01:47:14years after treatment.
• 01:47:16So,
• 01:47:17doctor Yac, I think you're
• 01:47:18out of that window, but
• 01:47:20this is something which is
• 01:47:21hugely valuable for our patients
• 01:47:23and, you know, to the
• 01:47:24point about structured exercise, something
• 01:47:26we still need to work
• 01:47:27on because,
• 01:47:29also insurance doesn't cover that
• 01:47:31either. Right? So it's something
• 01:47:33to really focus on how
• 01:47:34we can make these things
• 01:47:35more accessible.
• 01:47:38Yes. And so to follow-up
• 01:47:40with that,
• 01:47:41that's why one of the,
• 01:47:43the resources that's up there
• 01:47:44is the Livestrong program,
• 01:47:46because
• 01:47:47I a lot and a
• 01:47:48lot of times, I'll use
• 01:47:50PT physical therapy as the
• 01:47:52bridge to get ready for
• 01:47:53the Livestrong program because the
• 01:47:54Livestrong program is free. It's
• 01:47:57free for any cancer survivor,
• 01:47:59and it is a it's
• 01:48:00a structured twelve week exercise
• 01:48:03program.
• 01:48:04So, yes, I'm also very
• 01:48:05cognizant of the the burden
• 01:48:08of, of cost,
• 01:48:10and financial toxicity that So
• 01:48:11many of our cancer
• 01:48:12survivors, you know, you know,
• 01:48:14are susceptible to.
• 01:48:16So I'm also always looking
• 01:48:17for those free services wherever
• 01:48:19possible. Yep. Yeah. That looks
• 01:48:20strong.
• 01:48:24That's right. That's right. That's
• 01:48:24right. That's right. That's right.
• 01:48:24That's right. YMCA and I
• 01:48:26think some of it otherwise
• 01:48:27also.
• 01:48:30Yeah. So these these are
• 01:48:31really great discussions. And if
• 01:48:32you just take a step
• 01:48:33back is,
• 01:48:35very often,
• 01:48:36we especially in the early
• 01:48:38stages of your diagnosis and
• 01:48:40when we're when we're trying
• 01:48:41to figure out whether the
• 01:48:42cancer can be cured or
• 01:48:43even treated. And often, a
• 01:48:45lot of the stuff that
• 01:48:46we do are like, hey.
• 01:48:48These are the
• 01:48:49battle scars that you have
• 01:48:50to take on for the
• 01:48:51fight against cancer. But it's
• 01:48:52only later on that some
• 01:48:54of us are starting to
• 01:48:55appreciate
• 01:48:56that some of these
• 01:48:57things are either
• 01:48:59addressed through lifestyle modifications, things
• 01:49:02that you have to do,
• 01:49:02and things you kind of
• 01:49:03have to just live with
• 01:49:04as you get through this.
• 01:49:06And there are two aspects
• 01:49:07to that. Right? One is,
• 01:49:10as our treatments are getting
• 01:49:11better, there are more and
• 01:49:13more of folks like you
• 01:49:14who are getting through this
• 01:49:16and now having to deal
• 01:49:17with this in the longer
• 01:49:18term. At the same time,
• 01:49:19we are trying to also
• 01:49:20make our treatments
• 01:49:22more precise, more specific, more
• 01:49:24accurate so that we don't
• 01:49:25have these battle scars to
• 01:49:27face. But
• 01:49:28cancers, as we have talked
• 01:49:30about, cancer is still a
• 01:49:31deadly illness, and we still
• 01:49:32need to fight through this.
• 01:49:34And probably
• 01:49:36I'll use this opportunity to
• 01:49:38ask
• 01:49:39folks since you've actually gone
• 01:49:40through this journey. I think
• 01:49:41it'll actually be really great
• 01:49:42to have if anyone is
• 01:49:44willing or interested to to
• 01:49:45reach out to us to
• 01:49:47help us walk this journey
• 01:49:49with others because there's nothing
• 01:49:50better than actually having someone
• 01:49:52who's gone through this journey
• 01:49:53talk through a patient who's
• 01:49:54got newly diagnosed cancer. And
• 01:49:56it it doesn't have to
• 01:49:57be a lot. It could
• 01:49:58be just answering a couple
• 01:49:59of questions. Any sort of
• 01:50:00support, I think, would be
• 01:50:01really great for our patients.
• 01:50:02And,
• 01:50:04just feel free to reach
• 01:50:05out to us. And even
• 01:50:06if you just put put
• 01:50:07on your name and how
• 01:50:07we can contact you, and
• 01:50:08we'll try and work towards
• 01:50:10figuring out how we can
• 01:50:11connect you all to,
• 01:50:13patients
• 01:50:14to grow this group. And,
• 01:50:16hopefully, we'll have this more
• 01:50:18frequently. So as the group
• 01:50:19grows, then we can share
• 01:50:20experiences and practical tips on
• 01:50:22how to deal with some
• 01:50:23of the problems that we're
• 01:50:24facing.
• 01:50:26Any last words or comments?
• 01:50:28Pam, do you have anything
• 01:50:29you'd like to say?
• 01:50:34I'll just say thank you
• 01:50:36to everybody for the speakers
• 01:50:37and for everyone coming tonight.
• 01:50:39I think this was a
• 01:50:40really
• 01:50:41wonderful, very special event.
• 01:50:43If I put on the
• 01:50:44hat of kind of being
• 01:50:45a a leader in the
• 01:50:47cancer center, I wanna just
• 01:50:49reassure all of you that
• 01:50:51survivorship is a priority for
• 01:50:52the cancer center. In fact,
• 01:50:54that we are in the
• 01:50:55process of looking for someone
• 01:50:56to lead
• 01:50:57supportive care and survivorship. It's
• 01:50:59a new position.
• 01:51:01So please expect that a
• 01:51:02lot of these services will
• 01:51:03evolve and really be better
• 01:51:05defined under an umbrella where
• 01:51:07you can really have and
• 01:51:08I think Scott and,
• 01:51:11you guys can Natalie can
• 01:51:12speak to this as well.
• 01:51:13I think we're really looking
• 01:51:14to grow this program
• 01:51:16and,
• 01:51:17and and get some patient
• 01:51:18input. So I think it's
• 01:51:19a really exciting time. I
• 01:51:21think we look to you
• 01:51:21all to help
• 01:51:23us kind of guide that
• 01:51:24ship and and make sure
• 01:51:25that we're getting it right.
• 01:51:27So thank you. What a
• 01:51:28special event. Thank you very
• 01:51:29much.
• 01:51:34If you haven't already put
• 01:51:35words in the wall of
• 01:51:36hope, please do end with
• 01:51:38that. Thank you, Deepika, and
• 01:51:39thank you