Passion Struck with John R. Miles - Lynn Matrisian on the Frontlines of Pancreatic Cancer – Education, Awareness, and Progress EP 373
Episode Date: November 16, 2023In this heartfelt episode of the Passion Struck podcast, host John R. Miles engages in a deeply personal and timely conversation with Dr. Lynn Matrisian, the Chief Science Officer at the Pancreatic Ca...ncer Action Network (PanCAN), in recognition of World Pancreatic Cancer Day. John shares the story of his sister Carolyn’s brave fight against pancreatic cancer, a battle that mirrors the experiences of many families worldwide. Full show notes and resources can be found here: https://passionstruck.com/lynn-matrisian-pancreatic-cancer-action-network/ Passion Struck is Now Available for Pre-Order Want to learn the 12 philosophies that the most successful people use to create a limitless life? Get over $300 in free gifts when you pre-order John R. Miles’s new book, Passion Struck, which will be released on February 6, 2024. Sponsors Brought to you by OneSkin. Get 15% off your order using code Passionstruck at https://www.oneskin.co/#oneskinpod. Brought to you by Indeed: Claim your SEVENTY-FIVE DOLLAR CREDIT now at Indeed dot com slash PASSIONSTRUCK. Brought to you by Lifeforce: Join me and thousands of others who have transformed their lives through Lifeforce's proactive and personalized approach to healthcare. Visit MyLifeforce.com today to start your membership and receive an exclusive $200 off. Brought to you by Hello Fresh. Use code passion 50 to get 50% off plus free shipping! --► For information about advertisers and promo codes, go to: https://passionstruck.com/deals/ Breaking Barriers in Pancreatic Cancer: A Conversation with Dr. Lynn Matrisian In this emotionally stirring episode of "Passion Struck," John and Dr. Matrisian explore the latest advancements in early detection and treatment, delve into PanCAN's mission for public education, and discuss the critical need for awareness, particularly in high-risk communities. This episode is a tribute to the resilience and courage of pancreatic cancer fighters like Carolyn and an insightful journey into science and hope in the ongoing battle against this formidable disease. Watch my interview with Julie Fleshman On How PanCAN Is Raising The Pancreatic Cancer Survival Rate: https://passionstruck.com/julie-fleshman-pancreatic-cancer-action-network/ Catch my interview with Dr. Mike Pishvaian on the latest in clinical trials available for pancreatic cancer patients: https://passionstruck.com/dr-michael-pishvaian-fighting-pancreatic-cancer/. Watch my episode with pancreatic cancer survivor Sindy Hooper on having the power never to give up: https://youtu.be/yOo4Tlf_6uo?si=Hscq-j1WXESWVytI. Catch my interview with six-time cancer survivor Bill Potts on beating cancer by being your own best advocate: https://passionstruck.com/bill-potts-beat-cancer-be-your-own-best-advocate/ Like this show? Please leave us a review here -- even one sentence helps! Consider including your Twitter or Instagram handle so we can thank you personally! How to Connect with John Connect with John on Twitter at @John_RMiles and on Instagram at @john_R_Miles. Subscribe to our main YouTube Channel Here: https://www.youtube.com/c/JohnRMiles Subscribe to our YouTube Clips Channel: https://www.youtube.com/@passionstruckclips Want to uncover your profound sense of Mattering? I provide my master class on five simple steps to achieving it. Want to hear my best interviews? Check out my starter packs on intentional behavior change, women at the top of their game, longevity, and well-being, and overcoming adversity. Learn more about John: https://johnrmiles.com/
Transcript
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coming up next on Passion Stripe.
Immunotherapy, the K-RAS targeted therapy, and then things that disrupt that dense
stromal that is characteristic of pancreatic cancer, things that will loosen that up and let drugs
in better and let things work better. I was a third area of research and I think if we can learn
how to use those three approaches, those things that make
pancreatic cancer so difficult to treat, then we can get to the point where we can really start
to control it and see good lots of cases of long-term survivors. Welcome to PassionStruct. Hi,
I'm your host, John Armiles, and on the show, we decipher the secrets, tips, and guidance of the world's
most inspiring people and turn their wisdom into practical advice for you and those around you.
Our mission is to help you unlock the power of intentionality so that you can become the best
version of yourself. If you're new to the show, I offer advice and answer listener questions on
Fridays. We have long-form interviews the rest of
the week with guest ranging from astronauts to authors, CEOs, creators, innovators, scientists,
military leaders, visionaries, and athletes. Now, let's go out there and become passion struck.
Hello everyone, I am so glad to welcome you back to Episode 373 of Passionstruck, which
is consistently ranked by Apple as the number one alternative health podcast.
And thank you to all of you who come back every week to listen and learn how to live better,
be better, and impact the world.
If you're new to the show, thank you so much for being here, or you simply want to introduce
this to a friend or a family member, and we absolutely love it when you do that.
We have episode starter packs, which are collections of our fans' favorite episodes that we organize
into convenient playlists that give any new listener a great way to get acclimated to everything
we do here on the show.
Either go to Spotify or passionstruck.com slash starter packs to get started.
In case you missed it, I had an amazing interview earlier in the week with Jim Quick, founder
and CEO of Quick Learning, New York Times best-selling
author of Limitless and host of the Quick Brain podcast.
We discuss how Jim has spent the last 25 years helping people improve their memory, learn
to speed read, increase their decision-making skills, and unleash their super brains.
An episode that if you haven't listened to it, you definitely want to go and check it
out.
I also wanted to say thank you for your ratings and reviews, and if you love today's
episode or that one with Jim Quick, we would appreciate you giving it a
five-star review and sharing it with your friends and families, and oh we and our guests love to
see comments from our listeners. Today's discussion is incredibly close to my heart, as we recognize
Pink Karate Cancer Awareness Day, we aim to cast a light on a subject that touches many lives,
including my own. My sister Carolyn is currently battling pancreatic cancer.
Fight that many of our listeners may know all too well within their own families.
In a bid to amplify awareness and foster hope, it is my profound honor to welcome Dr. Lin Matrician,
the chief science officer at the pancreatic cancer action network, otherwise known as Pancan.
Dr. Matrician's life's work resonates with the urgency and dedication that I've witnessed firsthand in my sister's journey. Her commitment to education and her leadership
and research provide invaluable insight into the fight against this formidable disease.
Our conversation today is not only timely but critical. We'll unravel the latest
advancements in early detection. The field where Pancan's research is pioneering new pass and
offering rays of hope. Education especially for those in high-risk communities, is paramount,
and lens expertise will guide us through understanding,
which populations are more vulnerable and why.
We'll also delve into the specifics of PanCans mission to educate the public about the risks
and symptoms of pancreatic cancer,
ensuring that this information reaches the ears that it needs most.
Knowledge here is more than power, It's potentially life-saving.
Together, we'll explore the new treatment frontiers, discuss how to support those at risk,
and learn how every one of us can contribute to the battle against this disease. This episode
is dedicated to all the warriors like my sister Carolyn, who are fighting with grace and courage
every day. It's a conversation about hope, about science, and most importantly,
about the individuals and families who stand to benefit
from these strides and research and awareness.
So with a sense of purpose and hope for a future
where pancreatic cancer is no longer a silent killer,
let's welcome Dr. Lynn Matrysian
to the steeply personal and paramount episode
of the Passion Struck Podcast.
Thank you for choosing Passion Struck
and choosing me to be your host and guide
on your journey to creating an intentional life.
Now, let that journey begin.
I am so honored today to have Dr. Lynn Matrician
on Passionstruck. Welcome, Lynn.
Great to be here.
I was hoping we might start out by giving the audience
a little bit of information on what
personally started your drive and dedication to understanding and fighting cancer.
Yes, I think like a lot of people, I was impacted by pancreatic cancer at a relatively early
age.
I was deciding what I wanted to do with my life. My major was in
medical technology, so I was working in a hospital laboratory. They had a
research laboratory there, and I just fell in love with research. I thought,
oh my goodness, you can be the first person to know something, to ask interesting
questions. And so I started down that path and about that time my elementary school best friend and
next door neighbor was diagnosed with cancer and I had to go say goodbye to her.
And on the drive back, I remember saying if I have any talent in this research stuff,
I have to work on cancer.
That's what I have to do.
And I was lucky enough to get into graduate school
and end up doing cancer research.
So you went from getting your degree
to then really specializing in molecular biology
as I understand it in cancer metastasis.
How close do you think we are to understanding
the key drivers of how cancer spreads?
What we've learned about cancer in my lifetime is amazing.
I was actually born the year we discovered
the DNA was in a helix.
And so all these advances that have come from understanding
how one cell makes multiple cells
and what can go wrong with that to turn a normal cell
into a cancer cell.
All that's happened in relatively recent years as you think about it.
So as we learn more about it, we understand that there are normal processes
that get taken over by genetic changes within a cancer cell.
And these cells start doing things that they
would never ordinarily do. And the real hallmark of cancer is they start
spreading to other places. And they think that part of that is that they gain
the ability to live in environments they wouldn't ordinarily live in. And this
is a survival mechanism. And they seek out environments that will support
their growth and that's why cancer metastasizes. So there's been a lot of really interesting work
on really trying to understand that and understanding at the molecular level so that we can figure
out how to combat it with drug and devices like that.
On the show, I've interviewed a bunch
of medical professionals about the science
of epigenetics and longevity science,
people like Mark Heimann,
Carifits Gerald and others,
and there seems to be a common thread
of how lifestyle choices ultimately impact,
not only your health span, but your lifespan.
How much do those lifestyle choices
and we're talking here, what you eat, how you sleep,
how much exercise you get, your emotional state,
how much do those same factors coincide
with the outbreak or emergence of cancer?
Yeah, it's pretty clear that things like
unhealthy metabolism being overweight,
those types of things are risk factors for cancer.
And so they do contribute to them.
And so healthy lifestyle, good weight management,
exercising, fresh air, all those types of things,
good diet, all contribute to our overall health
and therefore our risk of developing
cancer. It's all tied in. We're just amazingly complex machines and ecosystem in how all
those things affect our ability to be healthy and our susceptibility to disease.
Yeah, and I wanted to touch on one more thing specifically.
And in this day and age, we seem to be bombarded by information everywhere.
Our life seems to be going so much faster.
And it was even for me a decade ago.
And because of that, we have more and more stress that's coming into our lives.
Is there any correlation between that chronic stress load and the need to do mindfulness,
meditation, exercise, other things, and cancer potentially forming in your body?
So those are complex epidemiological studies that need to be done to really answer those questions definitively. But there is data and evidence that those
kinds of things all impact cancer and how we deal with cancer if we get it.
If I have a correct, you still are an adjunct professor at Vanderbilt, but you spent about
two and a half decades there really doing significant cancer research. What caused you decide to shift your focus
to patient advocacy and to join Pancan?
Yeah, I loved my laboratory and my position
and it was a really wonderful career.
I spent a little bit of time
at the National Cancer Institutes
and looking at what programs you could put
in a national level that would really impact
diseases like cancer.
And that was really compelling to think about, I could do things with my laboratory, I could
do things with my department, with my institution, with my colleagues.
But here was a way to actually impact it on a national level. I thought there was you could really make some major changes in a field.
And I like the idea of working that closely with individuals impacted with the disease and really passionate about doing something and making it better for the next person who was diagnosed.
So I looked into that as a possibility to do for the next stage of my career.
Lynn, as you and I were talking before you came on, my sister is a pancreatic cancer survivor.
She's currently still battling the steadily disease. But because of that, I have learned far
more than I ever anticipated. I was going to learn about pancreatic cancer over the past few years. Correct me if what I'm saying is incorrect, but my understanding is pancreatic
cancer is currently the third leading cause of death from different forms of cancer and
it's on the cusp of becoming the second, primarily because we're finding ways for early detection and to treat other forms of cancer, which is making their
prognosis better.
And so pancreatic cancer, unfortunately, is moving up the ladder because of that is part
one.
Is that pretty accurate?
Yes.
Yeah.
If you look at those trend lines, and it's a study we did a couple years ago,
that deaths from other cancer types are falling,
which is fabulous and overall it's falling.
And so we've really made real advances,
but the line that's going up and not going down
is pancreatic cancer.
And it will pass colorectal cancer soon
and be number two in the number of deaths
in this nation. It's not a race that we ever wanted to win and something that really brings
home the importance of putting research advances, applying them to this disease.
Which is why it's so important that we're talking about this on pancreatic cancer awareness day.
My other understanding, and I have a friend from high school, honestly, who's, I can't make
this stuff up. She's married to one of the people who's been doing Whipple surgery longer than
anyone at Johns Hopkins. My understanding and talking to him and talking to others is pancreatic cancer is so difficult
because when you look at the pancreas protective membrane that is around it, I guess you could
say difficult to penetrate that it makes things such as chemotherapy, immunotherapy, other cancer
treatment radiation much more difficult to interact with the pancreatic cancer cells that are underneath
that membrane. Is that a correct understanding? Yep, it's one of those characteristics of pancreatic
cancer that looks so different from other cancer types. It builds up scar tissue around the tumor cells that make this very dense, hard capsule around and throughout the cancer.
And that's exactly right. What that does is collapse the blood vessels.
Drugs don't get in, can't get to the cancer cells as well.
Whether it's because of that or other things, the immune system just doesn't.
It's much more harder for, much harder for it to attack
pancreatic cancer than other cancer types. It has alterations in a pathway called the K-RAS
pathway and that happens in some other cancers, but it happens in almost all of the pancreatic
cancer cases. There's really these things that set pancreatic cancer
apart from other cancer types.
And we just have to work a little harder
to take the things that we learned in other cancer types
and make them work in pancreatic cancer.
One of the things that I think is so important
about what Pancan has been doing is you've been
setting extremely aggressive charts for trying to have the number of pancreatic cancer deaths.
And I know you've set another aggressive target.
What are the current survival rates for pancreatic cancers and what factors contribute to improving
these rates?
Yeah, so we track five-year relative survival rates.
So 1% of pancreatic cancer patients diagnosed this year
are anticipated to be alive five years from now.
And when we started, it was at 4%.
When pancans started, it's now at 12%.
And it's gone up 1% each year for the past two years.
So I feel like we've got some momentum going
that we're really getting there.
And we set aggressive goals.
That's where we're looking for 20% survival by 2030.
And we hold ourselves accountable for that.
And the way that you change survival rates is that you try to get better treatments,
you try to get earlier diagnosis, you do better supportive care for people who have pancreatic cancer.
And the thing that Pancan is so good at is that we look at all those things, that we look
at the holistic way of the disease and try to approach it from multiple ways so that we
can make that increase in survival that we also desperately want.
I wanted to go more deep into basically early detection, because as I understand it right now,
there's different areas that pancreatic cancer can form,
like at the head or the tail.
One is easier to treat than the other,
but whipple surgery currently seems to be the best option
that's available if the disease is caught soon enough.
The issue is that it's often detected by the time
that it's already metastasized,
and therefore it's being caught in stage three or stage four,
which limits the treatment options.
All that being said, what are some of the ways
that you and Pancan are trying to effectively
get ahead of this with earlier detection mechanisms.
Yes, you're absolutely right. One of the real problems is that so many people are diagnosed
and they already have metastatic disease in pancreatic cancer, which isn't necessarily the case
at all in many other cancer types, which have much longer survival. So earlier you catch the disease, the better the survival rate,
because of things like surgery, that surgery is the best way to get rid of cancer.
You simply take it out.
And so what we want to do is catch it earlier so that more people will
be able to go to surgery and we can improve the overall survival.
So how do you do that? So one way is
making people aware of symptoms. So that's an important thing about this month of November and
today we're all patriotic cancer day is that's really important that people are aware that what
of these symptoms are and to go ask their doctor about it. So they're relatively common systems
symptoms. But if they persist, then you need to go to your doctor
and just check it out and see if that's it.
But then there are research paths
that are being taken for earlier detection.
One way is if you have a genetic predisposition,
a genetic risk for pancreatic cancer,
it's good to know that because you can
be screened regularly and that can catch it very early. That's important. That's about 10% of the
cases of pancreatic cancer. So there are research efforts in that area. What we are doing at pancan
is we're very interested in diabetes, new onset diabetes. It looks like type 2 diabetes.
It happens to individuals usually over the age of 50. And it's actually a symptom of pancreatic
cancer, but it's not recognized as such. So we think if people would recognize that as a symptom,
get an image, a CT scan, or an MRI right then and there, that we could catch it much
earlier than when it's usually diagnosed, when there's a lot of other symptoms that finally
result in a diagnosis. And so we have a research effort to use new onset diabetes as a trigger
for the earlier detection of pancreatic cancer. So those types of things are, we think, that will help.
There are blood tests. We would all like to have a blood test for pancreatic cancer.
There are blood tests being developed for many cancer types that may work on a general population.
They are on the market, but we need more research to really know how good
they are for early detection of pancreatic cancer and other cancer types. Those are the
types of things that are in the works. It's exciting time research-wise for this. You
still have a ways to go, but we're getting there.
In terms of genetic testing, does Breckup or having the
Breckad gene, which you typically think of having breast cancer or a variant cancer, is
there any link between that and pancreatic cancer?
Dr. Justin Marchegiani Yes, there is.
For both Brocka one and in particular for Brocka two, for the form of the disease.
But yes, that's an elevated risk for pancreatic cancer. A lot of people
are much more aware of the risk for breast or ovarian cancer and don't realize that pancreatic
cancer is also a risk. There are surveillance programs where people with those genetic inherited
alterations can get regular screening for pancreatic cancer, as well as these other cancer types.
And there's several genes as well
that predispose to pancreatic cancer
and some other types of cancers.
We've learned a lot in the last decade or two
about what to look for in terms of risk.
We a lot of the listeners have heard Maria Menuno's story.
I know she's one of your ambassadors right now for this month and for the campaigns that
you're running.
Her case is a little bit different because I understand that where her cancer is located
is not the most aggressive area for pancreatic cancer, but in her case, it was discovered
because she was fortunate enough to do a whole body MRI scan.
Is that my thinking of this correctly?
That's my understanding.
Okay, which unfortunately given its cost
is not something that is given out to the general public,
although if it was, it would catch
not only a whole bunch of different cancers,
but a whole bunch of other things that would probably save the medical insurance company,
apparatus, a lot more money by paying for that test than the repercussions of not doing it.
Do you ever foresee this type of testing becoming more common and affordable for the general public?
and affordable for the general public?
That's a really hard question. In terms of it being recommended as something that everybody should do on a regular basis to catch cancer early, I have a hard time thinking that's ever really going
to work. I think that both the cost effectiveness and just the downside, if you weigh the benefits
versus the cost and risk and other things that are coming.
I don't know for sure, I don't have a crystal ball, but I find it a little hard to think
that would be the way that we would go.
I think this idea of blood tests that would then narrow down the population and tell you this person is worth
looking in this organ to see if they have cancer or not is a much more effective and adaptable
approach to cancer screening.
Yeah, that way you could look at all the masses and start boiling it down to a subset. And then from that subset,
you could then take it down to a micro level, which fits more into the common care system that
we're all part of today. I'm asking all these background questions because in the case of my sister,
she did not have, Brackup, she did not have any of the genes or a genetic history to have pancreatic cancer and when this
hit her at 46.
You're thinking young and of the spectrum, a person who's working out constantly in very
good shape, very mindful about what she's eating, etc.
And for her, it just started out that she started to feel incredibly tired doing the daily routines and workouts, etc.
that she was accustomed to. And she really didn't know what it was until she became
jaundiced. And that's what really gave them the inclination that something was a mess. I think
that's one of the hard parts about this is when you don't know what's causing that and she wasn't showing signs of being a type 2 diabetic.
It's hard sometimes to figure out what's happening.
Yeah.
Yeah.
So when you think about all of this, and since you've been in this role now for quite some time, what are some of the most common misconceptions about pig-creatic cancer that you encounter?
Well, it is a deadly disease, an aggressive disease, but there is hope, and there are things
that are being done all the time.
So I think the first thing to realize is that there's things to do that if one gets this
diagnosis.
An unfortunate, like your sister,
there isn't always risk factors or any symptoms
that give you an indication that something's happened.
In the case of John does, yes, absolutely.
Get that checked out immediately
because that is not normal, so that makes sense.
What we tell people to do in that case is call PanCan.
Call us at the PanCradic Cancer Action Network.
We have trained people on the phones by email
that have talked to people before that have been facing this
and can really help navigate all the things that need to be done
at that particular point in time.
Okay. And from your perspective as the chief science officer, what do you think are some
of the most promising areas of pancreatic cancer research that are currently underway?
There's some exciting new advances in being able to target that K-RAS pathway that I was talking about that so many pancreatic cancer cases are,
that's being driven.
It's really driving the growth of those cells
through this pathway.
And we've always considered it undrugable
that it was just not something that we had a drug for.
And there's been recent advances over the last really couple years that say, oh,
that's no longer true, there are drugs that can target this pathway. So that's incredibly
exciting, I think, as a real advance. And that should really just shut down the cancer.
Now cancers are really quite resilient. They have a lot of survival mechanisms. And so the approach I like for that people
to keep it under control for longer periods of time
is to get your own immune system to recognize that as foreign
and to keep it under check.
And so both immunotherapy, the K-RAS targeted therapy,
and then things that disrupt that dense
stromo we were talking about earlier that is characteristic of pancreatic cancer, things that
will loosen that up and let drugs in better and let things work better. I think it was a third area
of research, and I think if we can learn how to use those three approaches, those things that make
pancreatic cancer so difficult to treat, I think then we can get to the point where we can really start
to control it and see lots of cases of long-term survivors. We have long-term survivors.
There are in some cases we've figured out how to give those individuals a long and productive
and healthy lifespan, but we have to do it for more people.
We have to be able to find additional ways to expand that.
Okay, and I just wanted to make a note here that earlier in the year, I also interviewed
Julie Flushman, who is the CEO of of Pancan and she and I went really deep
into this area.
If you're looking for more information, I will put it in the show notes, but that's a great
episode to turn back to.
Another one that I did about this time last year was my sister and I actually interviewed
Dr. Mike Pishfin, who is at Johns Hopkins and is on the forefront of really looking at this
next generation of clinical trials that are out there.
And some of the advice that he gave, and I wanted to see if this resonates with you, is
he said things are changing so quickly, that the best thing that a pancreatic cancer
patient can do right now is buy themselves time because new treatments are coming out
all the time and he also gave Carolyn advice
that the most important thing for her to do
is to start really understanding
for biomarkers, understanding her gene mutations
because he thinks that is the area
where he's seeing the most hope right now.
You mentioned it, the Keras variety.
It's typically the CD, the ones,
but finding clinical trials or other treatment protocols that go after that.
He said what he's really hopeful for in immunotherapy is that they need to find a delivery vehicle.
He thinks that the way that this is going to happen is through this biomarker
and understanding how to use that as a vehicle to penetrate and then to use immunotherapy
to do the treatment.
I know Carolyn has discovered that there are now some clinical trials that are combining
the specialized chemotherapy that they're using to go after the biomarkers in combination
with immunotherapy that are having some good results.
Yeah, that sounds just right.
And Mike Pishfian is a wonderful doctor
and has done some really amazing work in this area.
He's collaborated, he's been quite a good colleague
to the Penn Cradi Cancer Action Network.
And we've worked together on some studies.
We have this Know Your Tumor Program
where we provide molecular profiling to individuals
who call our help line.
And we've learned from that.
And Dr. Pishfian and I and other colleagues
have worked together to understand what that means
and how we can then use that for the next patient
that we see.
And yes, that's exactly right.
We can learn so much.
I'm a molecular biologist.
I believe there's information in those molecules
that make a cancer different from a normal cell.
And if we can understand that, we can then find ways
to turn off those pathways, revert that cancer
to more of a normal cell.
And so these are all ways that people
throughout the world, throughout the United States are working on. And you take that basic
research, basic understanding it, turn it into clinical trials, something that you can
actually treat patients with. And then ask if it really improves outcomes. And that's
how we make advances in a disease like this
and any disease.
Well, and I'm gonna switch gears.
I know one of the biggest things that Pancan is working on
in addition to early detection
and to help people find treatment plans,
find clinical trials is the complex task of education.
And I understand that this is especially difficult in high-risk communities.
What strategies have proven most effective in trying to reach these high-risk communities?
We find that it's really a personal connection that helps people understand
the information and makes it important to them, makes it relevant to them.
So we have affiliate networks, we have 60 plus affiliates across the United States that
raise awareness, that raise funds, that educate the community about pancreatic cancer and
can say, call pancan, this is what you need to do.
So we find that having people affected by pancreatic cancer who are passionate and understand the
importance of people knowing that there's help knowing in essence what the steps they need to
take, that really is incredibly important. And we do that a lot of times by our personal interactions with people through our affiliate
networks and making this big community across the United States that can help anybody who
finds themselves interested and having to know something about pancreatic cancer, whether they wanted to or not.
I understand that you guys have a couple of resources that I just wanted to bring to bear in case
the audience wanted to access them. One of those is I understand you have a 10 question test
that helps people to learn more about pancreatic cancer risk factors and what might increase your risk, where can someone take that test?
So go to pancan.org,
www.pancan.org, www.pancan.org
and right now right on the front page, you'll see information about understanding your
risk. There it is again, a 10 simple questions, but just gives you a sense of what your risk might be and gives you a place
to find out more information and follow that up. Okay, and I also understand you have something
called the family history worksheet. How would someone use that? Again, go on pancan.org. It's
important, the things like how many people in your family have had pancreatic cancer.
At what age have they had it? Have they had other cancers?
These are the types of things that sometimes you have to go digging and you have to ask somebody and ask relatives and fill that out.
But it's actually a very good thing to know about what is your family history of cancer in general and will help you
understand your risk of pancreatic cancer in particular. So these are all this worksheet will help you
know what questions to ask and to be prepared to take it to your physician and find out should I
get tested for one of these predisposition genes or not? What we really recommend
is anybody who's had pancreatic cancer, who has the disease get tested, and that tells
us whether we also need to test their relatives or not.
I just wanted to bring this up that pancreatic cancer can affect anyone regardless of race, however, it tends to affect black Americans and Native
Americans and some Jewish populations more than others.
And I understand that you have a funded study called Regenerate that people in those communities
might be interested in as well.
Yes, very much.
We generate was a very nice study that was done to look at people with pancreatic cancer and
Identify whether they had a predisposition and then whether their relatives did or not
But it turns out that we had very little diversity in that study
So we learned a lot about white Americans, but we didn't learn a lot about these other
populations white Americans, but we didn't learn a lot about these other populations. We are
funding a pilot study to do some very some focus groups, some good work and
understanding how do we reach these communities. How do we ask these people to
come and get genetic testing? What do we have to tell them how do we make it
available? How do we make this resource easy to get for them?
We're getting ready to publish a paper now on what we've learned from that study and
then apply what we've learned to expanding that study and actually trying to put it into
practice.
Okay.
Well, thank you for sharing that.
And now I wanted to just go into a little bit about your other mission, which is advocacy,
and working at both a national level
and at a global level.
What ways has PanCans researched an advocacy influenced
or changed the conversation about pancreatic cancer treatment
and patient care?
the conversation about pancreatic cancer treatment and patient care. Yeah, certainly we track that whether people know about us that's been improving in terms of people being in that position, we're here to help.
This is what we do. This is what we really care about and continue to do that.
So our advocacy extends in terms of awareness, but we also do government advocacy.
We want to make sure that the National Cancer Institute, that the government has pancreatic
cancer on their radar knows how much it means to us,
and that we are affecting that change in that way as well.
Okay, and something I just wanted to put out there
for the listeners or the viewers is your advocacy matters.
The more that you are talking to your senators and Congress
and wealthy donors, etc.
All of this matters because all of this comes down to funding.
And a lot of times, money, as I understand it,
is being allocated to other cancers
because they're seeing in some cases
more progress being made,
but pancreatic cancer really needs more money
coming into the system.
Some more research can be done, which I think is a really critical aspect of this.
And that is that your voice matters, and we need more people being active out there
trying to get more money aimed at not only Pancan, but helping research facilities
and our major scientific universities
to have the funding to do more research to go after this.
That's exactly right.
If the constituents are passionate about something,
we need to transmit that to our elected officials,
and they need to make sure that's heard
in when they're making policy decisions and funding decisions.
A really good example of that is that there's a department
of defense allocation for funding for certain cancer types.
And a couple years ago, our voices were loud enough
and we were effective enough in making sure
that there's an allocation for pancreatic cancer research
through the department of Defense,
the Congressional Director Medical Research Programs.
So that is just a clear way of which,
raising our voices can result in real dollars
that go into really good research,
really innovative research that type of stuff
that isn't necessarily done by other government agencies and they can
really contribute to getting us where we want to go with improving outcomes from pancreatic
cancer.
I have a friend here who unfortunately has had cancer six times.
He hasn't had pancreatic cancer, thank God.
He has written a book and he has told me that regardless of what type of cancer you have,
the most important thing is for you to realize that you are the CEO of your life.
And that the way he words it is you need to run your cancer journey as if it's running
a business because there's so many elements of this from planning out your trips to the
doctors who you need to seek out, how you need to canvas that, to where you need to
put your money, to preparing for trips, to understanding your caregivers, everything.
Is that an analogy that you would recommend as well?
Yeah, well, certainly the voice of experience, but yes, we would very much advocate that
you need to be your own advocate when you're faced with a disease like this,
and that asking questions, probing on things, understanding, getting knowledge so that you
can make good decisions.
Those are all a critical part to any big decisions and your cancer treatment is going to be a
big decision. And so it really does.
I would agree with your friend that taking some responsibility and some accountability
for this, not just letting it happen, but being a very active participant in this is critical.
It's the way to really get the best results. Then, then lastly, looking forward,
what is your vision for the future
of pancreatic cancer research
and the possible potential for a cure?
Yeah, I am optimistic that we will be able to identify
pancreatic cancer early,
that we will be able to bring all the tools at our disposal to its eradication
and that we'll be able to control it. I think it'll be a long time before we're able to prevent it,
but I think we'll be able to control it and to live a normal, healthy life. And that's really the
goal. And I am optimistic that there are some very passionate and dedicated people in
this field that really want to make a difference and I think we will just continue to work at
it until that happens.
Thank you, Lynn.
Any closing remarks you wanted to give or any more information you wanted to share about
Pancan?
Well, just if you find yourself indeed of information about pancreatic cancer, pancan.org.
We are here.
This is what we do.
We want to help you be your best advocate and give you the resources, the information that
you need to make your best decisions.
We are optimistic and are creating hope for the future.
A person the audience understands once you call it up, hand can,
if you are a person who's been recently diagnosed,
my understanding is you're assigned to a case manager
who kind of then works with you, helps you figure out,
what are your best treatment options,
where would you go for something like the Whipple surgery,
and then if it's in a more advanced stage,
but you've got resources also that could help you with your diet, help you with planning,
your whole treatment, allocation, and then of course where the clinical trials are.
Yeah, our case managers are wonderful.
This is what they do and they will listen and customize, really give you the kind of information
you need then. If you need to call back a week, two weeks a month, whatever later with for their care and support, get the right treatment,
and get the right test to get the right treatment. So if we do all those things, I think that really
puts people on the right track for dealing with this disease. Well, then thank you so much for
joining us today. It was our honor to bring you on and hopefully spread some information
that the audience can use to help a loved one
or potentially help themselves.
Thank you for being here.
Well, thank you very much for the opportunity
to spread the word.
And I wish you and your sister all the best.
Thank you so much.
I was so honored to be able to do that interview,
especially on pancreatic cancer awareness day
with Dr. Lynn Matreson. and I wanted to thank Lynn and Pancan for the honor of having
her appear on today's show.
Links to all things Lynn will be in the show notes at passionstruck.com.
Please use the website links if you purchase any of the books from the guests that we feature
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You're about to hear a preview of the passionstruck podcast interview I did with Executive
Coach Jerry Klona who uses the skills that he's learned as a venture capitalist to help
entrepreneurs and business leaders.
He is a co-founder and CEO of Reboot, the executive coaching in leadership development company. Post of the Reboot podcast, an author of the great new book, Reunion,
Leadership and the Longing to Belong.
If you grow up socialized to quote not be vulnerable,
then you are in effect distancing yourself from your own heart.
And how can one come to know oneself if you don't even know your heart?
I have a reputation, John.
Wired magazine did an article on me and the headline was, this man makes founders cry.
The joke is that I make people cry because I ask them how they are, but I ask it like I really
care. And what typically causes the tears to fall at that point is the realization that they've
not been heard and they may not even be able to answer the question, how am I themselves?
Because they're so disconnected from themselves.
The fee for the shows that you share it with family or friends when you find something useful
are interesting.
You know someone who's dealing with pancreatic cancer in any shape performed, then please share this very important episode with them. The greatest compliment
that you can give us is to share the show with those that you love and care about.
In the meantime, do your best to apply what you hear on the show, so you can live what
you listen. Until next time, go out there and become Ash and Star. you