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Navigating a Cancer Diagnosis: Empowerment and Support · Talking FACS

• 0:01
  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 Facts 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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  This is a partnership presentation between the University of Kentucky Market
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  Cancer Center and the Martin-Gatton College of Agriculture, Food,
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  and Environment's Cooperative Extension Service.
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  Together, we are raising awareness and bringing cancer information to local
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  communities across the Commonwealth.
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  I am your host, Mindy McCulley, Extension Specialist for Instructional Support
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  with Family and Consumer Sciences Extension.
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  Being told you have cancer can be life-changing. It can be scary,
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  overwhelming, and full of the unknown.
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  But when we feel scared or overwhelmed, it's helpful to understand what's making us feel that way.
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  My guest today is Cheri Tolle, Director for Markey Cancer Center Affiliate Network,
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  and she's going to help us understand what happens when you are told that you have cancer.
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  Welcome, Cheri. Hi, Mindy. If I'm told that I have cancer, what happens next?
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  Well, fear of the unknown, as you mentioned earlier, that can be really,
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  really powerful. But learning more about a situation can help us take that power
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  away from fear and empower ourselves.
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  And being told that you have cancer is like that. There's so much that you don't know.
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  But once you have good information, you can make decisions that can give you
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  some sense of control over what's happening.
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  I've worked at Markey for over 35 years. And as you mentioned,
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  I'm currently the administrative director for our affiliate network,
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  which is our collaboration with community hospitals in Kentucky.
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  So that's given me a lot of experience and understanding about cancer.
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  But I've also been a caregiver to both my mom and dad when they had cancer.
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  And so I know we won't be covering everything, but I encourage your listeners
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  to talk with their health care providers and look for information from trusted sources.
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  And we can share a few of them at the end of our podcast.
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  I know, having 20 years ago been through caring for my mother with cancer,
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  that I wish that I had had a lot of these questions if I had known to ask these questions back then.
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  Because I was young, I didn't have the knowledge that I have now,
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  and I was caring for children myself.
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  And so I wish that I could have been more of a support to my father,
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  as he was the primary caregiver for my mom.
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  But yes, I love that we have these questions that we're going to go through
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  today and talk about how we can really be support for the person who is living
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  with cancer and also for the other caregivers who are providing care for our loved ones.
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  Well, and Mindy, I'm glad you mentioned your personal experience because I think
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  it's really important that, you know, when we talk about cancer,
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  it's not just the patient or the survivor that is dealing with a lot.
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  It's also the caregivers as well. And sometimes there are so many things that
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  are going on in our lives for patients and for caregivers.
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  And giving yourself a little bit of grace, giving yourself permission to realize
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  that you can't do everything, you can't need everything to everybody, but doing what you can.
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  And you bring up a really good point also that we know a lot more than what
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  we knew 10, 15, 20 years ago, not only about cancer itself, but also about how
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  to take care of ourselves and how to take care of others.
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  So I do hope that the questions and some of the information that we cover will
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  be helpful both to patients and caregivers.
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  What are some of your first strategies for someone who is beginning this cancer diagnosis journey?
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  Well, I think first of all, it's really important to get to know your cancer
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  care team and to feel empowered to ask questions.
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  One of the best things that you can do as a person diagnosed with cancer is
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  make a list of your questions before each appointment.
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  Some people keep a running list and write down their new questions each time
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  they go to an appointment.
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  And make sure that along with the questions that you had, that you've left space
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  on your list to write down the answers from the doctor or the nurse. Sure.
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  Yeah, it's great to have questions, but you've got to have a place for the answers, right? Absolutely.
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  And of course, some folks do that on their phone now. You know,
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  if you're old school like me and like to write things down on a piece of paper, that's great.
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  But, you know, a lot of times you can just type it in on your phone as you go.
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  Also, bringing a family member or a trusted friend with your visits can really help.
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  You've got somebody else who's listening and can help you understand what your
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  health care providers are saying. and then they can talk to you about it after
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  the visit so that you don't have to try to remember everything.
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  Exactly. And sometimes you might hear things just a little bit differently because
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  you're the one living with the diagnosis, right? Absolutely.
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  No matter how well educated we are or how good of a conversationalist or how
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  good of a listener we are, there are certain things that,
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  for example, the word cancer or, you know, other words that may come out that
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  all of a sudden your brain is going in a completely different direction.
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  And having somebody who can help with maybe remembering some of those things
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  that you didn't necessarily hear, or as you mentioned,
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  sometimes things can be stated and can have different meanings.
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  And so having somebody who can talk about that afterwards can be really helpful.
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  Yes, indeed. A couple of other things, just to remember that your questions are important.
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  There's no question that is too silly to be asked. If it's a question that you
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  have, I can guarantee that another person who has cancer has had that question as well.
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  And if you get an answer, but you still don't understand the answer, keep asking.
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  Make sure that you're given an explanation and you still don't understand,
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  Keep asking until you can fully understand the information that's being given.
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  Taking notes is real helpful. We talked about, you know, old school having a
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  pen and paper or taking information down on your phone.
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  You could also record the visit on your phone as well, and then you can review
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  that information later on.
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  Asking for printed information about the type of cancer and any treatments that
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  are suggested can be really helpful.
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  That way you have something that you can take home with you to review afterwards.
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  And I also think it can be very helpful to let your doctor or your nurse,
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  people on your health care team know how much information you want to know and
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  when you want to learn it and when you've had enough.
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  Some people want to learn everything. You know, they're real active information
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  seekers. They want to know everything there is to know about their type of cancer
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  and all of the treatments.
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  Others need some time. They need a little bit of information.
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  They want to have it spaced out over time.
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  You know, it's totally up to you. So information is power, but you don't want
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  to have information overload either.
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  So just make sure that you're communicating that with your cancer care team.
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  Well, and get enough information for you so that you don't go to Dr.
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  Google to get the answers.
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  And yes, information from your doctor. We'll talk about Dr. Google in a minute.
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  Dr. Google can be helpful, but also very harmful as well. So we will touch on Dr.
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  Google in a minute. So do you have a list of questions as a starting point that
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  can be helpful to ask your cancer care team?
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  Sure. One of the first things that you want to make sure you understand is what is my diagnosis?
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  Okay. What is the type of cancer that you have?
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  You also want to know if the cancer has spread, if it has spread from where
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  it started to any other part of the body, and if there is a stage of the disease
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  or how far advanced is the disease.
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  Is it still confined to one part of the body or has it spread to other areas of the body?
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  It's also important to know what your treatment choices are and also what's the goal of treatment.
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  What types of treatments are being recommended to you and why? It could be surgery.
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  It could be chemotherapy. It could be radiation therapy. It could be immunotherapy,
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  hormone therapy, clinical trial or a cancer, a new cancer treatment.
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  So it's important to ask, what are your treatment choices?
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  Sometimes, depending on how far the disease is advanced, a curative treatment may not be possible.
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  It may be important that the treatment goal may be to shrink the size of the tumor,
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  or it may be to provide some pain relief from the tumor, or it could be to maybe
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  we're making the tumor smaller so that it can be removed surgically more easily.
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  These are all kinds of questions that you can ask your doctor when you're talking
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  about what kind of treatment and what's the goal, what's the intent of the treatment.
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  Okay. Are we going to ask about side effects and how it's going to make us feel later?
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  Absolutely. With most types of treatments, there can be side effects.
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  And it's important to know not only what kinds of side effects you may expect
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  for the different treatments that are being recommended, but also how can those
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  side effects be managed.
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  We've come a long way with cancer treatments, but we've also come a long way
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  in managing cancer treatments as well.
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  And so it's important to know not only what types of treatments you're going
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  to get, but what are certain things that you can do or can be prescribed to
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  you in order to make the treatments more manageable.
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  One other thing for cancer patients that are in childbearing years is whether
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  or not they may become infertile or lose the possibility of having children
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  after they've had cancer treatment.
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  And so it's important to ask your doctor if you should consider storing sperm
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  or eggs in order to allow yourself the opportunity to have children after cancer,
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  if that's something that you want to have.
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  And if the possibility of infertility is a potential side effect for either
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  the cancer that you have or the treatment.
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  It's also important to ask, depending on what type of treatment is recommended,
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  how often you'll have treatments. Is it something that you may have several
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  times a week or a couple of times a month or every day?
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  How long will the treatment last? Is this something that's just for a few days
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  or will this go on for weeks or months?
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  Will I have to change my normal activities? If you're working,
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  if you're physically active, if you are a caregiver, if you're taking care of
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  children or taking care of older parents?
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  You know, how is cancer and the treatments that are being suggested,
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  how will those affect your normal activities?
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  And then I always think it's important to ask, are there new treatments that are available?
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  You know, would a clinical trial be appropriate or is a clinical trial available
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  for the kind of cancer that I have?
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  And clinical trials are studies into new types of cancer treatments.
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  The only way that we can improve our cancer treatments is to come up with new methods to treat them.
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  And the way that we test them is through clinical studies.
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  And cancer patients can often be the first to benefit from a new treatment if
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  it's shown to be available.
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  Always a good idea to check with your doctor about that. You know,
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  sometimes patients worry about being, you know, part of an experiment,
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  but these studies, if they are done at a place like the University of Kentucky,
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  an academic health system,
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  a place that has experience in doing clinical studies, those are the types of
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  places where folks can get state-of-the-art care for cancer through something like a clinical trial.
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  I have a question that I don't see on your list, but maybe how will my treatment be administered?
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  Because I think treatments are administered very differently now than they were
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  20 years ago. That's very true.
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  You know, some treatments, of course, surgical procedures, they can involve
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  several days of a hospital stay, or it may be an outpatient procedure.
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  Chemotherapy and other types of treatments can be done.
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  It may involve taking a pill, or it may involve an injection,
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  or it may involve an IV that's given over several hours.
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  It may involve a hospital stay, or it may be able to be done by outpatient.
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  Radiation therapy, it has certainly come a long way in the last 20 years as
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  well, and that's something that can be done outpatient.
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  Sometimes there are certain treatments that would need to be done on an inpatient
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  basis, but you're absolutely right.
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  The way that the treatments have been administered has certainly become very
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  advanced over the years. All right.
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  So when it comes time to have treatment and go through various forms of care, how do we do it?
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  Well, the first thing I would say is don't go through it alone.
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  You know, this is a time when reaching out,
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  asking for support from family and friends, support groups, counselors can help
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  make the journey a little less lonely and a little less burdensome so that you're
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  not carrying all of that yourself.
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  I think it's really important that people with cancer, let others help them
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  work with work or home responsibilities.
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  You know, it can be really hard to give things over to other people.
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  You need that sense of control that you have or that sense of responsibility
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  that you have for trying to, you know, manage everything in your life.
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  But at this point, you really need to focus on yourself and your health and
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  focus on your treatment and the goals of your treatment.
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  And so when people ask if they can help, by all means say yes and try to be specific.
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  Something like, I could really use some help with grocery shopping or,
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  you know, boy, I sure would like an afternoon out of the house.
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  Would you mind watching the kids for a while?
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  Or, you know, I'd really like to take a walk? Do you want to come with me?
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  You know, being very specific about how people can help can be really helpful
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  to them and certainly it benefits you as well.
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  And I think it's really important to remember that there can be lots of feelings,
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  lots of emotions and changes in how you feel about yourself.
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  And that's very, very normal.
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  And it's part of learning how to cope with a cancer diagnosis.
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  And so giving yourself permission to feel however you feel each day is a good thing.
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  And reaching out to others if you need help.
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  I love being specific about what your needs are.
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  I know that when we talk to caregivers, we say, be specific about how you can
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  help, not just say, call me if you need me.
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  But I love saying do.
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  This is what I need. Please do this for me. I think that on both parts,
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  that really is very helpful.
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  Absolutely right. If both the caregiver and the patient with cancer can be very
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  specific, that makes it super, super easy.
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  And that way, nobody feels like they're being a burden on either way.
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  I'm not stressing you out by feeling like I have to be right here beside you
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  all the time. And I'm not stressing you out by not knowing what I can do for you. yourself.
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  Absolutely right. All perfect advice. And I think so beneficial to patients
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  and to caregivers as well.
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  Cheri, before we wrap up, can we circle back and talk about Dr.
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  Google for just a minute?
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  Well, a little bit of word about the internet. It can be a great source of information,
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  but information can be both good and bad.
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  And the most important thing that folks can do is to look for information from trusted sources.
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  And this would include the National Cancer Institute, the American Cancer Society,
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  the UK Markey Cancer Center.
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  Folks can go to nci.gov for the National Cancer Institute, acs.org for the American Cancer Society.
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  And if you just type Markey, M-A-R-K-E-Y, Cancer Center in your search engine,
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  you can get to the Markey Cancer Center at UK.
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  Those are all non-biased, science-based, trusted sources of information that
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  you can get about cancer.
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  And of course, you'll link those in the show notes. Great. That's wonderful.
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  And also, separating fact from fiction, you know, that's important when you're
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  on the Internet as well as from well-meaning family and friends.
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  Opinions are fine and some people and
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  some places on the internet may be
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  very open about you know this is my opinion this is
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  what I think but you need to make sure that when you
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  are looking at information and making decisions you want to make sure that those
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  decisions are based on fact and opinions can be fine to consider but just make
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  sure that you know the information that you're getting is either an opinion or that's based in fact.
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  And I think that the last thing I'd like to leave with is that,
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  you know, cancer research has made remarkable advances in new treatments and
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  technologies over the last, you know, 10, 15, 20 years.
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  And for folks not to rely on outdated information, you know,
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  how people were treated 10 and 20 years ago may be very different than how people
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  are treated for the same type of cancer nowadays. Exactly.
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  So it's very important to make sure that when you talk with your doctor,
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  when you go to the internet, when you talk with your family and friends,
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  that you're keeping in mind, is this something that is based on what's happening now?
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  Or is this information, you know, 20 years old, and maybe this is something
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  that I need to find more up-to-date information on?
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  Well, and that is exactly why places like the University of Kentucky Markey
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  Cancer Center continue to do research and continue to have the clinical trials
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  so that we can have the best and most up-to-date care possible in the state.
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  Absolutely. We are the only comprehensive cancer center that's designated as
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  such by the National Cancer Institute in Kentucky.
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  So you don't have to go out of state for high-quality cancer care.
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  And because of our network of community hospitals across the state,
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  we have 20 sites currently that collaborate with us to provide many of those
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  options right in people's own communities across the state so that you don't
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  have to come to Lexington for much of the cancer care that's available.
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  Which is fabulous for people in the further reaches of the state because we
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  know that having your family close by really does contribute to your quality of life.
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  Absolutely right. It's good for the patient. It's good for the community.
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  It's good for the family and the caregivers.
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  We really like to keep patients as close to home as possible.
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  That's perfect. Thank you, Sherry, so much for taking the time to share with us.
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  Thank you, Melinda. I appreciate being here. If you're just tuning in,
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  you're listening to Cancer Conversations on Talking FACs, and you can find
• 21:26
  us wherever you listen to your favorite podcast.
• 21:31
  Thank you for listening to Cancer Conversations on Talking FACS.
• 21:35
  Our goal is to connect you with the latest advances in cancer research in the Commonwealth.
• 21:40
  If you enjoyed today's podcast and have a suggestion for a future show topic,
• 21:44
  please message us on the UK Markey Cancer Center Facebook page at facebook.com
• 21:50
  forward slash UK Markey or visit our website at markey.uky.edu for more information.
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• 22:02
  at your local extension office or online at fcs.uky.edu.
• 22:08
  Building strong families, building Kentucky. It starts with us.
• 22:13
  Music.