National Cancer Survivors Month

Ryan Gorman hosts an iHeartRadio nationwide special featuring Karen Kinahan, Nurse Practitioner at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University at Northwestern Medicine. For National Cancer Survivors Month, Karen Kinahan discusses medical and mental health challenges for cancer survivors, how family and friends can best support them, and ongoing research to help improve cancer survivorship.

Episode Transcript

(00:00):
Welcome to iHeartRadio Communities, a publicaffairs special focusing on the biggest issues impacting
you. This week, here's RyanGorman. Thanks so much for joining us
here on iHeartRadio Communities. I'm RyanGorman, and we have a really great
conversation lined up for you. Juneis National Cancer Survivor's Month, and for
an in depth discussion about cancer survivorshipand the challenges that come along with it,

(00:25):
let me bring in Karen Kinahan,nurse practitioner at the Robert H.
Lori Comprehensive Cancer Center of Northwestern Universityat Northwestern Medicine. You can learn more
at cancer dot Northwestern dot edu.Karen, thanks so much for coming on
the show, and let's start withthe work you do in the field of
cancer survivorship. Sure well, thankyou for having me first of all,

(00:46):
and I've been working actually in kenfor almost thirty years, plead it or
not. I came to Northwestern intwo thousand and one from the Children's Hospital
in Chicago children Stormorial which is nowChildren's to start the Star program. So
that's a program for adult survivors achild of cancer to follow them in the

(01:07):
adult medical setting when they have youknow, ongoing late effects of therapy,
screening and surveillance that needs to bedone. And so this way we connect
these patients as they become adults withadult providers and I've been doing that at
Northwestern for twenty three years. Ialso started seeing adult onset of leukemia and
foma and breast cancer and to circularcancer at the Lourri Cancer Center in Chicago.

(01:32):
For these are for patients that aretreated at LURIY, the Lori Cancer
Center in Northwestern, and they that'sa little bit of a different model.
Money of the patients are still fallingup with their medical oncology team or surgical
team and they're referred to us insurvivorship for a comprehensive one hour visit which
kind of details that we go overeverything from like their treatment summary, obviously

(01:56):
a review systems, how they're doing, offering resources, you know, mental
health resources, cycle social functioning,also sexual functioning, you know, just
endocrine cardiology. So it really justdepends on what the treatment they had,
kind of the services, but justsort of a one hour overview. And
then when we see patients back ina year, that's usually about a thirty

(02:19):
minute visit where we can just havea recap, but doing a physical exam,
and so it's that's kind of whatwe do. And we're pretty busy
because we have a large cancer centerwith a lot of patients that need to
be followed up and it's a growingpopulation. As you know, you've also
published numerous articles in peer reviewed journals. What are some of the topics that
you've studied well, coming from thepediatric world into the adult world. There

(02:45):
was a few in particular. Oneof probably the first one then I feel
very proud of that was our researchwe did back in like two thousand and
two, two thousand and five erathe fertility effects of child of cancer and
so how impacts them as adults,which also then led to the formation down
the road with doctor Teresa Woodroff ofthe Oncle Fertility Consortium, and so our

(03:08):
little study we did in the STARTprogram kind of helped propel that in a
small way, but kind of asignificant way. So that's been ongoing and
if you look up anybody with cancerthat's looking about their fertility implications, that's
a you know, a national programnow internationally known even too. We've done
a lot about transition of care frompediatric to young adults. I've done some

(03:30):
germatological late effects that large and ledinto a larger Child the Cancer Survivor's Study,
which as a cohort out of SaintJude and so it was a little
kind of a pilot study which didin the START program, and then more
recently I guess still some other fertilityprojects along the way, and more recently
our cardio oncology study looking back tenyears at our adults of ours a child

(03:54):
the cancer and part cardiac late effectsscreening surveillance, caredograms looking at global strain
injection prection which are medical words,but just how that impacted their care and
medical care that they received, Didthey have any major adverse cardiac events along
the way. So that again wasmore with the STAR program population with my

(04:17):
cardiology colleague. So that's pretty muchin a nutshell, It's been a variety
of different topics that I've been workingwith. Were these parts of cancer survivorship
really hadn't been studied in depth before? Yeah? So interesting back in this
goes back twenty plus years already nowlike two thousand and two, we knew

(04:41):
that certainly chemo therapy agents that sociallychild with cancer patients received and adults as
well cause and fertility sterrility for bothmen and women. So back in that
era, there wasn't really like youknow, it was one of those topics
where you have a discussion the patientand be like, well, you survive
your cancer, you may be infertileor sterile, you know, And so

(05:02):
it was exciting about that, andso much happened probably between two thousand and
two to two thousand and seven totwenty ten, where we were as a
nation really discussing fertility prior to cancertreatments, effort especially for our young adult
population and even some children that they'reable to do ovarying and chiaro preservation,

(05:25):
and that's a whole topic within itself, but it really did change the way
cancer could impact, you know,family bearing, the ability to have children,
and we tried to do as muchas we can and still do to
prevent it from happening or give likesperm banking for men over in preservation if
possible for women. And again thisis not cancer across the board. There

(05:47):
are many patients that are diagnosed cancerthat aren't going to have those type of
treatments, but for those that weknow that that might be impaired or impacted
potentially. It's something that now weaddress up front, which is pretty cool
to see that change over time thathappened, like you're in the early two
thousand, two thousand and five,two thousand and seven timeframe. I find

(06:09):
it really interesting because I've interviewed somany different cancer organizations over the years,
on the research side, on thetreatment side, all of it, and
this is the first time that thatparticular issue has ever come up. I
never even really thought of it before. Kids dealing with cancer, the long
term effects of trying to battle thatcancer. Yeah, and it really is

(06:34):
dependent, which is why savarship programsare important. And of course I'm probably
biased by saying that, but becauseit's not over when the treatment's over,
there are many times that patients willhave secondary cancers or screening that's needed to
be done earlier than the general population. And so if patients are able to

(06:55):
be followed in a cancer Starship program, but that's really what they're focusing on,
not so much the disease coming back. Of course, if that happens,
we're going to get you, youknow, plugged in where you need
to be. But prevention of likeeven skin cancer checks and things where you've
had radiation that we know that thatcan be an issue for patients and that
they are a higher risk for developingskin cancer. Possibly not right away,

(07:18):
but we kind of say after tenyears, we really want patients that had
radiation any part of the body tohave a total body skin exam by a
dermatologist. Ideally that would be theplace to go for that cardiac late effects.
Again not across the board, butpatients have had a doc cerubsit or
a anthracycling, chemotherapy or trust radiation. Those are things that we just you

(07:41):
know, routinely in my world,we are looking at ecocartigrams, we are
ordering acocartigrams, other you know,there's like this ct calcium score. So
it's sort of just you have tokind of know your risk factors and then
kind of put that into play withyour follow up care and your medical care.
And I'll just go on for asecond and say, if saviorship quote

(08:03):
unquote programs aren't available, then reallyeducating patients is important and then providing this
information to their primary care doctors becausehopefully people were able to have some primary
care, which is also very busyat this time, you know, in
era. But if we can workwell, try to work along with them,
let them handle some of the generalmetal things diabetes, butcherar cholesterol,

(08:26):
and we can kind of come inon the field of like what are there
actually risks because of the cancer treatthat they had. I'm Ryan Gorman,
joined by Karen Kinahan, nurse practitionerat the Robert H. Lori Comprehensive Care
Center of Northwestern University. At NorthwesternMedicine. You can learn more and see
all the work that they're doing atcancer dot Northwestern dot edu. Let's talk
about cancer survival rates and how they'vechanged just during the course of your thirty

(08:50):
five year nursing career in oncology,and also how this has impacted cancer survivorship
care. Okay, yeah, it'sa I'm a hot topic, and that
is because I can show you somestats actually that I even have that in
twenty twenty two, there were eighteenmillion cancer survivors in the US, and
I'm talking all ages. Twenty thirty, they're expected to be more than twenty

(09:13):
two million cancer survivors in the UnitedStates and by twenty forty, which does
seem quite far away, but they'resupposed to be twenty one million are expected
and about seventy three percent are goingto be over sixty five years old.
And if you can think of theword, there's a term called the silver
tsunami, and this means that,you know, many patients are going to

(09:35):
be older, older, maybe thansixty five, which as a time just
in general without cancer, there iscomorbidities that happen diabetes, obesity, heart
disease, things like that. Sowhen you add the risk of some of
the cancer treatments on top of that, it's kind of I think the silver
tsunami thing is like, we're goingto have the tsunami these patients at a

(09:58):
time also when primary paradoctors are notalways available as much as we'd like them
to be, and I you know, it's not something we struggle with.
So that's sort of where just educatingpatients about what the treatment they had,
what are the risk factors they needto be aware of. It might be
something as simple as like a bonehealth or bone density that that can be

(10:20):
covered by you know, primary careprovider and then maybe an endoprenologist if things
get more treatment is needed. SoI really believe in the patient education piece
of when patients are done with treatmentand asking questions to their oncology treating providers,
whether that's a nurse practitioner or physicianor even a nurse that's involved with

(10:41):
in the program that they're being treatedat, and say what's next, Like
what do I need to know about? Can I get a treatment summary which
they should be giving them so thatsometimes I don't know how every system works,
but this is something that patients canask for and then maybe do a
little research on their own and getsome education about like what are the risk
factors I need to be aware of? And it's frightening at the same time

(11:05):
that it's empowering, I think too, because this information should be like,
Okay, now I've gone through allthis battle a lot of times, and
I know that the treatment it's notover, but I need to be aware
of maybe the disease itself, andthat's where the medical team comes in,
but also what things am I riskfor now because of the treatment I had.

(11:26):
When we talk cancer survivorship, howmuch has early detection and cancer screenings,
how much has that helped? Oh, I think it's definitely been a
factor. I don't have the statsexactly on that. But just if you
think, for example, cool rectalcancer screening, you know, everyone knew
like, oh you just turned fifty, here's your colonosopy order. Well,
now that is dropped down to fortyfive years old for routine screening. That's

(11:48):
without any kind of family history.For patients that had abdominal radiation. We
even do that earlier, and thechild of cancer will all we do it
like I think it's said years oldor five years after radiation. So you
know, these young patients in thiscase are getting corrective cancer screening at least
the first colasky and then maybe you'reyou know, find out when the next

(12:09):
one would be done. After that. Breast cancer screening obviously mimography, breast
MRIs ultrasounds that are being done.We done, you know, where I
work, we sort of say fortyyears old is the time to start breast
cancer screening for the routine population.So hopefully if breast cancers are developing,

(12:31):
that they're caught earlier, maybe earlierstage, which leads lends to easier you
know, more successful treatment and hopefullymore higher survival rates. So when that's
not done, and even with coloncancer screening is not done and by the
time problems present themselves or things arefound on exam, then a lot of
times it's more of an advanced diseasewhich just tends to have worse outcomes.

(12:54):
So those are probably two areas thatI think the screening has really made a
difference, and we'll continue to andI think those suidelines might change down the
road as more studies are done onnow when these cancers are developing, and
if earlier screening is needed. ForNational Cancer Survivors Month, I'm Rian Gorman
with Karen Kinahan, nurse practitioner theRobert H. Lori Comprehensive Cancer Center of

(13:16):
Northwestern University at Northwestern Medicine. Sofor those who have never gone through any
kind of cancer treatment, what aresome of the medical and psychosocial needs of
cancer survivors that they might not beaware of? Well, medical needs again
very depending on the actual cancer treatment, So that can be everything from neuropathy,

(13:39):
from certain like platinum type of chemotherapyagents. There are patients that develop
aromatated that need to have a romataseinhibitors for example, which is after like
an estrogen receptor positive breast cancer.We worry about bone density, so we
follow that every two years closely.As I mentioned a little bit about the
cardiac effects, there are class ofdrugs called anthracycling chemotherapy, which is dox

(14:03):
rubiss I dot rubisen and those canlend to having an early onset of cardio
biopathy, which is a decreased heartfunction. That's something that can be chronically
seen and so it's not just anacute effect during the treatment, but even
after the treatment. And so screeningtests like ecocartigrams are pretty much the standard

(14:26):
of care for the guidelines even havegot there are guidelines on cardiology that we
I follow fairly closely. They justcame out fairly you see, like in
twenty three again, so we're justkind of updating our surveillance a little bit
on the cardiology follow up. Soagain the key point is here maybe to
just make sure that patients are findingout you know, what are what treatment

(14:48):
did they have? And even youknow, I'm not a big fan of
like doctor Google, but going onsome of the websites for information you can
get you can plug in the treatmentthat you had and they give like the
kind of a lane in this termof like what are some of the issues
you should be dealing with. Forexample, you asked about psychosocial health,
and that's something that I personally asa provider, always asking every visit I

(15:11):
see patients, how's your mental health? Express, anxiety, depression, kind
of key things, because that issomething that I found the patients obviously,
what I'm finding, especially for patientsthat are more recently done with treatment,
you know, they might have hadjust a hug of a time and just
really down to the dumps, orthey might have been the opposite where they

(15:33):
just powered through and then now they'redone, and it's like, wow,
what happened? Like I really needto, like, you know, talk
to somebody about this and kind ofwhere I'm at today and the re entry
into the workforce and to school forpeople that are in school. So I'm
certainly a proponent of mental health services. They are also kind of hard to

(15:54):
come by and you know, youmight have to wait a little bit to
get in with the provider, butit's something that we definitely need to address
with our patients to make sure thatnot only their physical health as well,
but they are surviving and thriving withtheir mental health. And that's another primary
care doctors can help with some ofthat. If they need a medication like

(16:14):
an antidepressant medicine, they that's somebodythat's something that private care providers are able
to help with, and so wealso lean on them a little bit for
that. And then psycho therapy withpsychologists, licensed clinical social workers that to
help them with therapy sessions or psychologiststhat we have. We have some of
the cancer center that just see ourpatients and they are again quite busy just

(16:37):
because there are quite a few patientsthat need their services. On the mental
health side of cancer survivorship. Howmuch has awareness and focus on that grown
since you started your career in thisfield. Yeah, it's grown a lot.
I mean, I think one ofthe things, well in childhood cancer.
Just to kind of tell you mytrajectory, in like nineteen ninety five,

(17:02):
the Child Cancer Survivor Study, whichis it's now OWT of Saint Jube
started and that's when they started trackingand doing a lot of interviews and surveys
with child and patients with various childof cancers, so mapoma's leukemia, sarcoma,
brain tumor, the adult side,and that. On that note,
we developed survivorship guidelines in two thousandand three when the children's on college group

(17:23):
form. So a lot happened withthe childhood, adolescent and now adult world.
The adult world sort of, Ialways say the patients that kind of
caught on and caught up around maybetwo thousand. Ideally, in two thousand
and six, there was a publicationfrom the Institute of Medicine called from Cancer
Patient to Cancer survivor Loss in Transition, and it was you know, several

(17:47):
positions psychologists that got together at theNational Institute of Health and said, you
know, we have an issue weneed to deal with, which is how
are we going to take care ofall these cancer survivors. That nothing happened
immediately, Unfortunately, it took itkind of got the propelling a little bit
too, probably like twenty let's sayfourteen or so, when the adult world
there was some instant there was aYoung Commission on Cancer, which if you

(18:11):
want to be accredited with America Collegeof Surgeons. That's when spiritship care planning
sort of became a mandate. Sothere were some mandates put in around the
country which were pretty difficult to meet. The standards and those standards have changed,
but it really kind of propelled survivorship. I think in the not only
just in the public, but alsoin the medical world, like this is

(18:32):
a part of the care and weare a growing number. We really need
to do a good job of,you know, taking care of these patients
when they're down the treatment and whetherthat's a one time visit with a spiship
care plan presented to them. Iknow some programs do it that way,
and you know, that's better thannothing, I guess, and so to.
I think that there is a andongoing programming that's happening, but there's

(18:56):
also funding resources that are that Ithink that sets cancer centers and either smaller
rural cancer cibers probably struggle with becausewe're all struggling a little bit with like
our amount of patients we see andjust you know, getting the services and
funding for some of that too.June is National Cancer Survivor's Month. I'm
Ryan Gorman with Karen Kinahan, nursepractitioner at the Robert H. Lori Comprehensive

(19:21):
Care Center of Northwestern University at NorthwesternMedicine. You can learn more at cancer
dot Northwestern dot edu. I thinkwhat's been so enlightening about this conversation up
to this point is just how littlesome of us who haven't been through something
like this realized when it comes tothe ongoing challenges. You think of someone

(19:42):
who beats cancer and then I don'tknow, I guess you kind of just
assume it's over. But there areall these other things that you've mentioned that
those who battled cancer still have todeal with or still might be struggling with

(20:02):
from both the physical and a mentalperspective. Yeah, I think that's There's
this phrase, it's called the demolicysyndrome, where like you have like an
arm in the air and you're waitingfor the arm to come down on you
and like this to come back.So obviously the fear of recurrence is real.
Getting scans, there's a term calledsc anxiety, so very sometimes getting

(20:23):
those scans after treatments over can bevery anxiety provoking. Patients can't sleep well,
you know, and they get veryanxious and hopefully, you know,
on the best case scenario, thescans look good and you kind of have
your plan set out. But thoseare real after effects of going through a
cancer diagnosis, and it's not youknow, like one one thing across the

(20:45):
board fits everybody. Some people aregoing to generally just do better than others.
And I think offering support to patientsand families and friends that have cancer
during the time is great, butwould also encourage patients, family and friends
to talk to their patient or familyor friend who has the cancer, like
five months later, six months later, check in with them, how are

(21:07):
you doing, you know, becausethat's, like I said, a lot
of times that can be kind ofwhen some of this anxiety can come into
play and that it's just it's it'sover, but it's not over. I
guess it's a chronic illness really ina lot of cases, and it's a
lifelong journey. And so the hopeis that everybody survives and has a good
quality of life, and that's youknow, the hope for everybody, but

(21:30):
that's not always the case. Sojust just making sure patients and families are
checking in with their patients that havea cancer is helpful. Are there are
there unique challenges that young adult cancersurvivors face. Yes, So just to
clarify young adult cancer what that means, This is a population that about maybe

(21:55):
like twenty years ago or more sortof really came to light where it's patients
die those between fifteen and thirty nine. In general, that's the kind of
the aya cancer. And it wasdiscovered and really brought to the forefront a
little bit because in child and cancer, prior to like the year two thousand,
we had a lot of patients survivingtheir cancer and now like kind of

(22:18):
whatever, how we're going to dealwith them right, and who's going to
take care of them? The olderpopulations of cancer patients in general we're also
doing well, but this young adultpopulation wasn't doing as well as far as
survival rates. They were having advanceddisease a diagnosis partially perhaps because of the
transition from a pediat pedutrition to adultcare. Young adults a lot of times

(22:40):
don't maybe have insurance or they haven'tgotten a primary care provider, so they
may let things go longer, whichturned out to be more advanced cancer.
And simply just to put it thatway, So on top of just the
increase in a decrease, really that'sdecrease in survival, but not the push
forward that we're having other cancers,it became relevant that, wow, we

(23:02):
really need to like kind of focuson this population. The other cycle social
pieces of the young adult or aYA cancer. Are that a lot of
young adults if you think of ayou know, a freshman in college or
a young man or woman that juststarted their career at twenty five years old
and all of a sudden, bam, have cancer. Now they maybe have
to move back in with their parents. So there's a lot of psychosocial pieces

(23:23):
that are specific to that age range. You know, just maybe perhaps started
a family or wanting to start afamily, and now maybe fertility might be
a factor. So there's a goodamount of resources for adolescent and young adell
cancer nationally and even in Chicago.We have a pretty strong program at Northwestern.
It could even just google Northwestern MedicineAYA Cancer and you'll get to like

(23:48):
their Facebook page and what we're doing. But it's really a lot of programs
around the country have been promoting thispopulation for about the past twenty years or
so, and with good reason,because it is a population that we hope
these patients are going to do well, but they just definitely have some different
psychosocial needs and may probably need moresupport and peers, you know, like

(24:11):
and so maybe meeting people their ownage that have gone through a similar thing
is helpful. So trying to helpthem reach out and get some good resources
in addition to, you know,education about their treatment is helpful. Following
up on a point you've just made, because I've heard this in connection with
other charitable organizations I've talked to dealingwith other issues. Is it beneficial for

(24:37):
adult survivors of childhood cancer in particular, or any cancer survivor to seek out
a group where they can talk topeople who have been through the same thing.
Well, if it's available. Thereis a really great organization that is
actually housed in Chicago called Everman's Angels, and that is a it's kind of

(24:57):
a pair of can serve patient witha cancer survivor. So somebody that's been
through all the same age, samearound, the same age, diagnosis,
same diagnosis, try to do matchupgender. And this has been going on
for honestly decades. And so JohnnyImmerman, a cancer survivor himself, will
has started this many years ago.So Immerman Angel So we can look up

(25:21):
that online. That's a good resource. There's not always like for my patients
in the Star program. There's notalways like a oh, let's have a
group for adults of virus, achild of cancer because a lot of them
are We've variety of patients in myown program that are from nineteen to sixty
five years old, but they allhad cancer at twenty one years or younger.
So that's a little bit of adifferent group to try to get matched

(25:44):
up. So we've done some educationevents over the years and try to you
know, promote some community in thatregard, but having groups doesn't that doesn't
always seem to work. But wealso promote in at least in Chicago,
and this is something like, forexample, Guildo's Clubs so bills of Chicago,
and I know there's various programs ofbuilders cover around the country. It's

(26:06):
a cancer community support center. Theyhave programs for childhood cancer patients and adult
patients. They have patients, theyhave programs for children of adult patients and
families. So it's a really greatresource. And so that's something you could
even look online. And if there'sany silver lining of the pandemic is that
some of these programs now, includingsome of the cancer community resources we have,

(26:27):
are doing virtual programs, so youdon't have to drive an hour for
a five minutes. You might billjust log in just search cancer community programs
like in whatever vicinity patients are inlistening to this and see there's programs available
and that can offer some information andguidance and support and for not only the
patients themselves, but maybe for theparent of the patient or the like I

(26:48):
said, the children of a patientof cancer, because that obviously this does
impact them as well, and lookingto improve cancer survivorship care. What are
some of the areas that you're focusedon these? I think primarily for me,
like I mentioned earlier, the cardiaceffects, it's just an area that's

(27:08):
kind of gained some traction lately withkind of a subspecialty called cardio oncology.
Again, this doesn't that everybody's noteverybody has this type of cancer treatment,
the anthracycling human therapy, the duckservice in or chest reciation therapy. But
for those that do, it's reassuringthat in the pediatric world and also in

(27:30):
the adult world, that there arenow cardiooncologists that are helping the oncology team
take care of these patients that haveyou know, these toxicities. Sometimes there
are toxicity during treatment, for example, perhaps with perception for breast cancer or
this type of chemotherapy for lymphomas adux rubucen So this is a it's exciting

(27:52):
to me and I think, youknow, there's a lot of I work
in a lot of different areas likeundergrid and renal and you know, all
the ologyas I was saying, butthe partiology one is pretty exciting, and
I think that there's just a lotgoing on and this is going to be
more prevalent, and I think thatwe'll have more information and hopefully better screening
and surveillance set up over the nexteven three to five years. And final

(28:15):
question for you, what are somethings that people should look for if they
go to cancer dot Northwestern dot eduto learn more about what we've been discussing.
Oh, well, I think wehave some good resources. I know
that one thing many years ago ifyou look at the Star program or just
search our program Northwestern on that website. We've made a video series years ago

(28:36):
which is still on the website tomy knowledge, and it talked about a
lot of different topics. This ismore for again adults of ours, childhood
cancer like fertility, transition to care, the cardiac effects. So that's something
to just look for resources that wehave on our website. If nothing else
right, try to message somebody youknow within the cancer center, because I
have gotten messages from patients that havelike kind of logged in and I said,

(29:00):
I have a question like how doI address this or get this addressed?
And it does trickle down to theproviders. So hopefully we can even
reach out back to you and givesome resources on that. So hopefully that's
helpful for National Cancer Survivor's Month.Karen Kinahan, nurse practitioner at the Robert
H. Lori Comprehensive Cancer Center atNorthwestern University at Northwestern Medicine. Again,

(29:22):
you can learn more at cancer dotNorthwestern dot edu. Karen, thank you
so much for taking a few minutesto come on the show and share all
of that with us. We reallyappreciate it. Thank you, Thanks for
having me all right, and that'sgoing to do it for this edition of
iHeartRadio Communities. As we wrap thingsup, one offer a big thanks to
our guest and of course to allof you for listening. I'm your host,
Ryan Gorman. We'll talk to youagain real soon.