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Who is a Cancer Survivor? · Talking FACS

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  Welcome to Talking FACS, and thank you for tuning in to Cancer Conversations
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  on Talking FACS, a podcast collaboration between the University of Kentucky
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  Markey Cancer Center and the UK Martin-Gatton College of Agriculture,
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  Food and Environment's Cooperative Extension Service.
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  We will share with you the latest developments in cancer prevention,
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  diagnosis, treatment and research from the experts at Markey Cancer Center,
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  Kentucky's only National Cancer Institute designated Comprehensive Cancer Center.
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  Talking FACS is hosted by the UK Family and Consumer Sciences Extension Program.
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  Our educators share research knowledge with individuals, families,
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  and communities to improve quality of life.
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  Hello, and welcome to Cancer Conversations on Talking FACS.
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  We share information that you can use to strengthen your family,
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  your community, and our state.
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  This collaboration between the Cooperative Extension Service and Markey Cancer
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  Center gives you knowledge so that you can live your best quality of life.
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  Today, we're going to be talking about survivorship. And my guest is Dr.
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  Laurie McLouth, an assistant professor of behavioral science in the College of
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  Medicine and Market Cancer Center with the Center for Health Engagement and
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  Transformation. Welcome, Dr. McLouth.
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  Thanks so much for having me. I really am excited to talk to you about this
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  topic because I know that there are many of us who have been touched by cancer.
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  And I guess I really want to know who classifies as a survivor?
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  So, we use the definition that the National Cancer Institute uses,
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  where somebody is a survivor from the point of a cancer diagnosis on.
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  So, whether that's to cure or whether that's to end of life,
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  from diagnosis, you are a cancer survivor.
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  Okay. So, that is very broad.
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  And so, pretty much anybody who has been diagnosed, once they have that diagnosis,
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  they're a survivor. They are.
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  It's something that, you know, some people resonate with that term and others don't.
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  But that is the way that we typically will consider somebody.
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  Well, and it almost, to me, it sounds like an empowerment statement,
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  you know, that gives you, you're not really a patient, you're a survivor.
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  And that gives you some power to do something about what you have been diagnosed with.
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  Exactly. Yes, that's the spirit that that came from. When we talk about cancer
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  survivors, what statistics are we seeing? How many survivors are there nationally?
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  Yeah, so there are over 18 million cancer survivors in the United States alone,
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  and this is a number that is increasing.
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  So by 2040, so 15 years from now, it's projected to reach about 26 million people.
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  And part of this is our aging population, but we also have had a lot of advancements
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  in cancer treatment where people
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  are living longer with cancers that historically had a harder prognosis.
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  So lung cancer, for example, which is very prevalent in our state,
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  is a cancer that has really changed a lot in the past 10 years in terms of how we treat it.
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  So even people who are diagnosed with advanced stages of lung cancer that are
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  unlikely to be cured, those patients are living longer with lung cancer as well.
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  So we have this growing population of survivors that we really need to be providing
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  care to. That makes perfect sense.
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  I know on the show, I've talked to several different doctors about different
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  treatments for various types of cancer.
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  And that's what I'm hearing time and time again, is that we are living longer
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  with cancer. And that is exciting.
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  But it also means that we have a whole lot more survivors. Yeah, it's really good.
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  But I mean, some people talk about, you know, cancer as a chronic disease in some ways.
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  So it's a really exciting time to be working in cancer and to think about what's
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  possible to really serve the needs of cancer survivors and their loved ones.
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  So maybe we should not think of it as a chronic disease, but maybe a chronic lifestyle, right?
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  Yeah, that's interesting. Yeah. Yeah. So...
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  If we are seeing so many more survivors, what are some of the treatments for survivorship?
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  So really, survivorship encompasses a lot.
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  It's people's physical well-being, their spiritual, their mental,
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  their social, their functional, their occupational.
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  All of these aspects of quality of life and health matter to survivors.
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  So some of the concerns that survivors might have, like whether you're going
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  through cancer treatment or you're post-treatment, you know,
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  there's a social component of it. Like, how do I manage my social relationships?
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  How do I manage work? What are my opportunities for work? What are my benefits
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  that are available to me?
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  How do I pay for treatments, whether I'm currently going through it or maybe
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  I'm worried about my family's financial future?
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  What resources are available to me? how do I manage the side effects from treatment
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  or toxicities from treatment, as well as disease side effects.
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  So some of these can happen while people are getting treatment,
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  but then we also have late effects that can emerge after people are done with treatment.
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  And those are really important to manage from a quality of life perspective as well.
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  And then managing other aspects of a person's health, whether they have another health condition,
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  maybe they have heart disease or lung disease or diabetes, making sure that
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  the entirety of a person's health and well-being is cared for.
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  And that is such an important point because another thing that I have learned
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  in talking to so many of our marquee doctors is that it's often not cancer that
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  is the fatal condition for so many people.
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  It's something else. And so managing those social determinants of health is
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  really important, isn't it? It is.
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  In Kentucky, are we seeing people managing their survivorship rates in new and different ways?
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  Yeah, it's a great question. I think, you know, we, one of the things that came
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  out in the last year, year and a half,
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  the National Cancer Institute and the VA and Health and Human Services issued
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  the national standards for cancer survivorship care.
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  So these are much like other practice standards or guidelines.
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  They're really to help guide what we are doing in clinical practice to care
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  for cancer survivors and their caregivers, their primary support person.
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  And, you know, this encompasses everything from are we following people's well-being
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  over time? Are we giving them summaries of their treatment?
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  Do they understand what their options are for treatment and connecting them
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  with the right supportive services?
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  Are we managing distress and anxiety, financial toxicity? And so I think it's
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  like we're currently evaluating how well Markey is fulfilling these practice standards.
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  But we are also trying to think about the ways in which people can be receiving
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  survivorship care in their primary care practices or closer to home.
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  So survivorship care, especially in the post-treatment phase,
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  can often get a little bit fragmented because it's this collaboration often
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  between primary care and the treating cancer care facility.
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  So a lot of people, you know, they want contact with their oncologist for life.
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  Right. Be a difficult transition for them.
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  I have a friend who was diagnosed with cancer as a teenager,
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  and now she's in her 40s, and often heard her say, I don't consider myself a survivor anymore.
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  I'm just living my life. And I wonder if that's a trend that you see with people
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  who have lived 20 or more years since their initial cancer diagnosis.
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  When I hear that, to me, it sounds like really healthy coping where this person,
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  you know, there is this tendency that people, when they're diagnosed,
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  their whole life can become about cancer.
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  And we know that when people lose touch with the other things that are important
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  to them, that they have poor quality of life.
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  So hearing somebody who has gotten through treatment and it almost sounds like
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  cancer has faded into the background and is not something that she feels like defines her anymore.
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  I think that makes a lot of sense. And there are people that want to keep cancer
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  kind of front of mind because it helps them feel like they are taking good care
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  of their health or maybe they are connected with the community in that way.
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  But there are so many other aspects of a person that are really important and
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  success can often look like.
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  I mean, really, at the end of the day, we want people to be living fully and
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  living well, whether they're going through treatment or whether they're done with treatment.
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  Sure. Yeah, that makes really good sense. And I wonder if that's something that
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  you see also in children who are diagnosed very young and then,
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  you know, grow on to have...
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  Wonderfully vibrant lives. And that's just something that happened to them as a child.
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  Yeah. It's, you know, it's that continuity of care piece is really important.
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  And I know you've talked some about childhood and adolescent,
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  young adult cancers on this show before, but just trying to help.
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  I think one of the ways in which we have often not done well enough is helping
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  people who were diagnosed early in their life understand what sort of follow-up
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  care they might need, and particularly for surveillance,
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  so kind of watching for new cancers emerging or what their risk might be for
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  that and helping people to really make informed decisions about what their health
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  and their health care needs to look like.
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  Right. So I knew that there's some new research that's happening around survivorship
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  at UK. Can you tell us about that?
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  Yeah, I'm so excited to get to speak about this.
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  So, Markey, this last year, launched a new research initiative.
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  So, it is our Cancer Survivorship Research Initiative.
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  And the point of this is really to kind of bring clinicians and researchers together,
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  advocates, community members, partners to help us think through like what are
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  some of the most pressing challenges
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  that we need to be addressing in survivorship research in Kentucky?
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  And how do we design research projects around that and develop new ways to improve
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  cancer care and survivorship care?
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  So it's a way to really bring people together and get different voices at the
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  table to help shape the future of cancer care through high-quality research
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  that will serve our state.
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  I think that's so amazing, and I'm excited that it's happening right here at
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  the University of Kentucky at the Markey Cancer Center.
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  You all have done so much to improve just the whole fabric of what's happening
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  with cancer in Kentucky.
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  Thank you. Everybody here, to me, is so focused on, you know, we are for Kentucky,
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  whether that's through our research, our clinical services.
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  It is really clear to me that it is baked into the bones of the university.
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  And so this is just one more way that I think Markey and UK are going to serve Kentucky.
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  I really appreciate the time that you've taken to share with me today.
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  I know that this is a topic that is so important to all of us,
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  whether we are survivors or whether we are those who have been touched by cancer.
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  Thank you for the opportunity, Mindy. And I did want to just mention that our
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  survivorship initiative, it also includes cancer caregivers or primary support people.
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  So that is a research that is really important, especially thinking,
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  it has always been important, but especially thinking about people that now
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  have longer courses of their disease who are living longer, right?
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  It's even stage disease, it is no longer for many people.
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  A short-term illness and so
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  the sacrifices that cancer caregivers often make
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  kind of you know we're just going to focus on getting
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  you through treatment and i'm going to pause this other
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  part of my life while we do this like we have
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  really got to do more to pay attention to the needs of cancer caregivers and
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  part of that is is really giving them the supportive services they need to maintain
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  their life and to help give them endurance and resilience to survive as well.
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  Oh, yeah. I can definitely see that. Because if you have a diagnosis that goes
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  on for years and years and years, that's going to be really hard,
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  not only on the patient, but also on the caregiver as well. Yeah.
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  And we have to move our care towards thinking about caregivers as part of the
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  people we are treating and serving.
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  And let's just focus on the patient and survivor.
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  I think that's a wonderfully holistic approach to providing quality care for
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  our patients and those who surround them. Absolutely.
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  Dr. McLeod, thank you for your time today. I really appreciate that you have
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  taken just a few moments to speak about this and to share it with our listeners.
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  Thank you, Mindy. Thanks so much for the opportunity. If you are just tuning
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