Welcome to iHeartRadio Communities, a public affairs special focusing on the biggest issues impacting you. This week, here's Ryan Gorman. Thanks so much for joining us here on iHeartRadio Communities. I'm Ryan Gorman, and we have a really great conversation lined up for you. June is National Cancer Survivor's Month, and for an in depth discussion about cancer survivorship and the challenges that come along with it, let me bring in Karen Kinahan, nurse practitioner at the Robert H.
Lori Comprehensive Cancer Center of Northwestern University at 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 with the work you do in the field of cancer survivorship. Sure well, thank you for having me first of all, and I've been working actually in ken for almost thirty years, plead it or not. I came to Northwestern in two thousand and one from the Children's Hospital
in Chicago children Stormorial which is now Children's to start the Star program. So that's a program for adult survivors a child of cancer to follow them in the adult medical setting when they have you know, ongoing late effects of therapy, screening and surveillance that needs to be done. And so this way we connect these patients as they become adults with adult providers and I've been doing that at
Northwestern for twenty three years. I also started seeing adult onset of leukemia and foma and breast cancer and to circular cancer at the Lourri Cancer Center in Chicago. For these are for patients that are treated at LURIY, the Lori Cancer Center in Northwestern, and they that's a little bit of a different model.
Money of the patients are still falling up with their medical oncology team or surgical team and they're referred to us in survivorship for a comprehensive one hour visit which kind of details that we go over everything from like their treatment summary, obviously 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 just depends on what the treatment they had, kind of the services, but just sort of a one hour overview. And then when we see patients back in a year, that's usually about a thirty minute visit where we can just have a recap, but doing a physical exam, and so it's that's kind of what we do. And we're pretty busy because we have a large cancer center with a lot of patients that need to be followed up and it's a growing population. 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 the pediatric world into the adult world. There
was a few in particular. One of probably the first one then I feel very proud of that was our research we did back in like two thousand and two, two thousand and five era the 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 of the Oncle Fertility Consortium, and so our little study we did in the START program kind of helped propel that in a
small way, but kind of a significant way. So that's been ongoing and if you look up anybody with cancer that's looking about their fertility implications, that's a you know, a national program now internationally known even too. We've done
a lot about transition of care from pediatric to young adults. I've done some germatological late effects that large and led into a larger Child the Cancer Survivor's Study, which as a cohort out of Saint Jude and so it was a little kind of a pilot study which did in the START program, and then more recently I guess still some other fertility projects along the way, and more recently our cardio oncology study looking back ten years at our adults of ours a child
the cancer and part cardiac late effects screening 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, Did they have any major adverse cardiac events along the way. So that again was more with the STAR program population with my cardiology colleague. So that's pretty much in a nutshell, It's been a variety
of different topics that I've been working with. 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 now like two thousand and two, we knew that certainly chemo therapy agents that socially child with cancer patients received and adults as
well cause and fertility sterrility for both men and women. So back in that era, there wasn't really like you know, it was one of those topics where you have a discussion the patient and be like, well, you survive your cancer, you may be infertile or sterile, you know, And so it was exciting about that, and so much happened probably between two thousand and two to two thousand and seven to twenty ten, where we were as a
nation really discussing fertility prior to cancer treatments, effort especially for our young adult population and even some children that they're able to do ovarying and chiaro preservation, 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 much as we can and still do to prevent it from happening or give like sperm banking for men over in preservation if
possible for women. And again this is not cancer across the board. There are many patients that are diagnosed cancer that aren't going to have those type of treatments, but for those that we know that that might be impaired or impacted potentially. It's something that now we address up front, which is pretty cool to see that change over time that happened, like you're in the early two
thousand, two thousand and five, two thousand and seven timeframe. I find it really interesting because I've interviewed so many different cancer organizations over the years, on the research side, on the treatment side, all of it, and this is the first time that that particular 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 that cancer. Yeah, and it really is
dependent, which is why savarship programs are important. And of course I'm probably biased by saying that, but because it's not over when the treatment's over, there are many times that patients will have secondary cancers or screening that's needed to be done earlier than the general population. And so if patients are able to 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, you know, plugged in where you need to be. But prevention of like even skin cancer checks and things where you've had radiation that we know that that can be an issue for patients and that they are a higher risk for developing skin cancer. Possibly not right away, but we kind of say after ten years, we really want patients that had radiation any part of the body to have a total body skin exam by a
dermatologist. Ideally that would be the place to go for that cardiac late effects. Again not across the board, but patients have had a doc cerubsit or a anthracycling, chemotherapy or trust radiation. Those are things that we just you 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 to kind of know your risk factors and then kind of put that into play with your follow up care and your medical care.
And I'll just go on for a second and say, if saviorship quote unquote programs aren't available, then really educating patients is important and then providing this information to their primary care doctors because hopefully people were able to have some primary care, which is also very busy at this time, you know, in
era. But if we can work well, try to work along with them, let them handle some of the general metal things diabetes, butcherar cholesterol, and we can kind of come in on the field of like what are there actually risks because of the cancer treat that they had. I'm Ryan Gorman, joined by Karen Kinahan, nurse practitioner at the Robert H. Lori Comprehensive Care Center of Northwestern University. At Northwestern Medicine. You can learn more and see
all the work that they're doing at cancer dot Northwestern dot edu. Let's talk about cancer survival rates and how they've changed just during the course of your thirty five year nursing career in oncology, and also how this has impacted cancer survivorship care. Okay, yeah, it's a I'm a hot topic, and that is because I can show you some stats actually that I even have that in twenty twenty two, there were eighteen million cancer survivors in the US, and
I'm talking all ages. Twenty thirty, they're expected to be more than twenty two million cancer survivors in the United States and by twenty forty, which does seem quite far away, but they're supposed to be twenty one million are expected and about seventy three percent are going to be over sixty five years old.
And if you can think of the word, there's a term called the silver tsunami, and this means that, you know, many patients are going to be older, older, maybe than sixty five, which as a time just in general without cancer, there is comorbidities that happen diabetes, obesity, heart
disease, things like that. So when 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 going to have the tsunami these patients at a time also when primary paradoctors are not always 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 educating patients about what the treatment they had,
what are the risk factors they need to be aware of. It might be something as simple as like a bone health or bone density that that can be covered by you know, primary care provider and then maybe an endoprenologist if things
get more treatment is needed. So I really believe in the patient education piece of when patients are done with treatment and asking questions to their oncology treating providers, whether that's a nurse practitioner or physician or even a nurse that's involved with in the program that they're being treated at, 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 that sometimes I don't know how every system works, but this is something that patients can ask for and then maybe do a little research on their own and get some education about like what are the risk
factors I need to be aware of? And it's frightening at the same time that it's empowering, I think too, because this information should be like, Okay, now I've gone through all this battle a lot of times, and I know that the treatment it's not over, but I need to be aware of maybe the disease itself, and that's where the medical team comes in, but also what things am I risk for now because of the treatment I had.
When we talk cancer survivorship, how much 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 stats exactly on that. But just if you think, for example, cool rectal cancer screening, you know, everyone knew like, oh you just turned fifty, here's your colonosopy order. Well, now that is dropped down to forty five years old for routine screening. That's
without any kind of family history. For patients that had abdominal radiation. We even do that earlier, and the child of cancer will all we do it like I think it's said years old or five years after radiation. So you know, these young patients in this case are getting corrective cancer screening at least the first colasky and then maybe you're you know, find out when the next 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 forty years old is the time to start breast cancer screening for the routine population. So hopefully if breast cancers are developing, that they're caught earlier, maybe earlier stage, which leads lends to easier you
know, more successful treatment and hopefully more higher survival rates. So when that's not done, and even with colon cancer screening is not done and by the time problems present themselves or things are found on exam, then a lot of times it's more of an advanced disease which just tends to have worse outcomes.
So those are probably two areas that I think the screening has really made a difference, and we'll continue to and I think those suidelines might change down the road as more studies are done on now when these cancers are developing, and if earlier screening is needed. For National Cancer Survivors Month, I'm Rian Gorman with Karen Kinahan, nurse practitioner the Robert H. Lori Comprehensive Cancer Center of
Northwestern University at Northwestern Medicine. So for those who have never gone through any kind of cancer treatment, what are some of the medical and psychosocial needs of cancer survivors that they might not be aware of? Well, medical needs again very depending on the actual cancer treatment, So that can be everything from neuropathy,
from certain like platinum type of chemotherapy agents. There are patients that develop aromatated that need to have a romatase inhibitors 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 of drugs called anthracycling chemotherapy, which is dox rubiss I dot rubisen and those can lend to having an early onset of cardio
biopathy, which is a decreased heart function. That's something that can be chronically seen and so it's not just an acute effect during the treatment, but even after the treatment. And so screening tests like ecocartigrams are pretty much the standard of care for the guidelines even have got there are guidelines on cardiology that we I follow fairly closely. They just came out fairly you see, like in twenty three again, so we're just kind of updating our surveillance a little bit
on the cardiology follow up. So again the key point is here maybe to just make sure that patients are finding out you know, what are what treatment did they have? And even you know, I'm not a big fan of like doctor Google, but going on some of the websites for information you can get you can plug in the treatment that you had and they give like the kind of a lane in this term of like what are some of the issues
you should be dealing with. For example, you asked about psychosocial health, and that's something that I personally as a provider, always asking every visit I
see patients, how's your mental health? Express, anxiety, depression, kind of key things, because that is something that I found the patients obviously, what I'm finding, especially for patients that are more recently done with treatment, you know, they might have had just a hug of a time and just really down to the dumps, or they might have been the opposite where they just powered through and then now they're done, and it's like, wow,
what happened? Like I really need to, like, you know, talk to somebody about this and kind of where I'm at today and the re entry into the workforce and to school for people that are in school. So I'm certainly a proponent of mental health services. They are also kind of hard to come by and you know, you might have to wait a little bit to get in with the provider, but it's something that we definitely need to address with our patients to make sure that not only their physical health as well,
but they are surviving and thriving with their mental health. And that's another primary care doctors can help with some of that. If they need a medication like an antidepressant medicine, they that's somebody that's something that private care providers are able to help with, and so we also lean on them a little bit for that. And then psycho therapy with psychologists, licensed clinical social workers that to
help them with therapy sessions or psychologists that we have. We have some of the cancer center that just see our patients and they are again quite busy just because there are quite a few patients that need their services. On the mental health side of cancer survivorship. How much has awareness and focus on that grown since you started your career in this field. Yeah, it's grown a lot. I mean, I think one of the things, well in childhood cancer.
Just to kind of tell you my trajectory, in like nineteen ninety five, the Child Cancer Survivor Study, which is it's now OWT of Saint Jube started and that's when they started tracking and doing a lot of interviews and surveys with child and patients with various child of cancers, so mapoma's leukemia, sarcoma, brain tumor, the adult side, and that. On that note, we developed survivorship guidelines in two thousand and three when the children's on college group
form. So a lot happened with the childhood, adolescent and now adult world. The adult world sort of, I always say the patients that kind of
caught on and caught up around maybe two thousand. Ideally, in two thousand and six, there was a publication from the Institute of Medicine called from Cancer Patient to Cancer survivor Loss in Transition, and it was you know, several positions psychologists that got together at the National Institute of Health and said, you know, we have an issue we need to deal with, which is how
are we going to take care of all these cancer survivors. That nothing happened immediately, Unfortunately, it took it kind of got the propelling a little bit too, probably like twenty let's say fourteen or so, when the adult world there was some instant there was a Young Commission on Cancer, which if you want to be accredited with America College of Surgeons. That's when spiritship care planning sort of became a mandate. So there 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 also in the medical world, like this is a part of the care and we are 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 whether that's a one time visit with a spiship
care plan presented to them. I know some programs do it that way, and you know, that's better than nothing, I guess, and so to. I think that there is a and ongoing programming that's happening, but there's also funding resources that are that I think that sets cancer centers and either smaller rural cancer cibers probably struggle with because we're all struggling a little bit with like our amount of patients we see and just 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, nurse practitioner at the Robert H. Lori Comprehensive Care Center of Northwestern University at Northwestern Medicine. You can learn more at cancer dot Northwestern dot edu. I think what's been so enlightening about this conversation up to this point is just how little some of us who haven't been through something
like this realized when it comes to the ongoing challenges. You think of someone who beats cancer and then I don't know, I guess you kind of just assume it's over. But there are all these other things that you've mentioned that those who battled cancer still have to deal with or still might be struggling with
from both the physical and a mental perspective. Yeah, I think that's There's this phrase, it's called the demolicy syndrome, where like you have like an arm in the air and you're waiting for 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 called sc anxiety, so very sometimes getting
those scans after treatments over can be very anxiety provoking. Patients can't sleep well, you know, and they get very anxious and hopefully, you know, on the best case scenario, the scans look good and you kind of have your plan set out. But those are real after effects of going through a cancer diagnosis, and it's not you know, like one one thing across the board fits everybody. Some people are going to generally just do better than others.
And I think offering support to patients and families and friends that have cancer during the time is great, but would also encourage patients, family and friends to talk to their patient or family or friend who has the cancer, like five months later, six months later, check in with them, how are you doing, you know, because that's, like I said, a lot of times that can be kind of when some of this anxiety can come into
play and that it's just it's it's over, but it's not over. I guess it's a chronic illness really in a lot of cases, and it's a lifelong journey. And so the hope is that everybody survives and has a good quality of life, and that's you know, the hope for everybody, but that's not always the case. So just just making sure patients and families are checking in with their patients that have a cancer is helpful. Are there are
there unique challenges that young adult cancer survivors face. Yes, So just to clarify young adult cancer what that means, This is a population that about maybe like twenty years ago or more sort of 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 was discovered 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 surviving their cancer and now like kind of whatever, how we're going to deal with them right, and who's going to take care of them? The older populations of cancer patients in general we're also doing well, but this young adult population wasn't doing as well as far as
survival rates. They were having advanced disease a diagnosis partially perhaps because of the transition from a pediat pedutrition to adult care. Young adults a lot of times don't maybe have insurance or they haven't gotten a primary care provider, so they may let things go longer, which turned out to be more advanced cancer.
And simply just to put it that way, So on top of just the increase in a decrease, really that's decrease in survival, but not the push forward that we're having other cancers, it became relevant that, wow, we really need to like kind of focus on this population. The other cycle social pieces of the young adult or a YA cancer. Are that a lot of young adults if you think of a you know, a freshman in college or a young man or woman that just started 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 that are specific to that age range. You know, just maybe perhaps started a family or wanting to start a family, and now maybe fertility might be a factor. So there's a good amount 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 Medicine AYA Cancer and you'll get to like
their Facebook page and what we're doing. But it's really a lot of programs around the country have been promoting this population 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 more support and peers, you know, like and so maybe meeting people their own age that have gone through a similar thing
is helpful. So trying to help them 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 dealing with other issues. Is it beneficial for adult survivors of childhood cancer in particular, or any cancer survivor to seek out a group where they can talk to people who have been through the same thing.
Well, if it's available. There is a really great organization that is actually housed in Chicago called Everman's Angels, and that is a it's kind of a pair of can serve patient with a cancer survivor. So somebody that's been through all the same age, same around, the same age, diagnosis, same diagnosis, try to do matchup gender. And this has been going on for honestly decades. And so Johnny Immerman, a cancer survivor himself, will
has started this many years ago. So Immerman Angel So we can look up that online. That's a good resource. There's not always like for my patients in the Star program. There's not always like a oh, let's have a group for adults of virus, a child of cancer because a lot of them are We've variety of patients in my own program that are from nineteen to sixty five years old, but they all had cancer at twenty one years or younger. So that's a little bit of a different group to try to get matched
up. So we've done some education events over the years and try to you know, promote some community in that regard, but having groups doesn't that doesn't always seem to work. But we also promote in at least in Chicago, and this is something like, for example, Guildo's Clubs so bills of Chicago, and I know there's various programs of builders cover around the country. It's a cancer community support center. They have programs for childhood cancer patients and adult
patients. They have patients, they have programs for children of adult patients and families. So it's a really great resource. And so that's something you could even look online. And if there's any silver lining of the pandemic is that some of these programs now, including some of the cancer community resources we have, are doing virtual programs, so you don't have to drive an hour for
a five minutes. You might bill just log in just search cancer community programs like in whatever vicinity patients are in listening to this and see there's programs available and that can offer some information and guidance and support and for not only the patients themselves, but maybe for the parent of the patient or the like I said, the children of a patient of cancer, because that obviously this does impact them as well, and looking to improve cancer survivorship care. What are
some of the areas that you're focused on these? I think primarily for me, like I mentioned earlier, the cardiac effects, it's just an area that's kind of gained some traction lately with kind of a subspecialty called cardio oncology. Again, this doesn't that everybody's not everybody has this type of cancer treatment,
the anthracycling human therapy, the duck service in or chest reciation therapy. But for those that do, it's reassuring that in the pediatric world and also in the adult world, that there are now cardiooncologists that are helping the oncology team
take care of these patients that have you know, these toxicities. Sometimes there are toxicity during treatment, for example, perhaps with perception for breast cancer or this type of chemotherapy for lymphomas a dux rubucen So this is a it's exciting to me and I think, you know, there's a lot of I work in a lot of different areas like undergrid and renal and you know, all the ologyas I was saying, but the partiology one is pretty exciting, and
I think that there's just a lot going on and this is going to be more prevalent, and I think that we'll have more information and hopefully better screening and surveillance set up over the next even three to five years. And final question for you, what are some things that people should look for if they go to cancer dot Northwestern dot edu to learn more about what we've been discussing.
Oh, well, I think we have some good resources. I know that one thing many years ago if you look at the Star program or just search our program Northwestern on that website. We've made a video series years ago which is still on the website to my knowledge, and it talked about a lot of different topics. This is more 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 we have on our website. If nothing else right, try to message somebody you know within the cancer center, because I have gotten messages from patients that have like kind of logged in and I said, I have a question like how do I address this or get this addressed? And it does trickle down to the providers. So hopefully we can even
reach out back to you and give some 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 at Northwestern University at Northwestern Medicine. Again, you can learn more at cancer dot Northwestern dot edu. Karen, thank you so much for taking a few minutes to come on the show and share all
of that with us. We really appreciate it. Thank you, Thanks for having me all right, and that's going to do it for this edition of iHeartRadio Communities. As we wrap things up, one offer a big thanks to our guest and of course to all of you for listening. I'm your host, Ryan Gorman. We'll talk to you again real soon.