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Recurrence Anxiety · Talking FACS

• 0:01
  Welcome to Talking FACS and thank you for tuning in to cancer conversations on Talking FACS.
• 0:06
  A podcast collaboration between the University of Kentucky Markey Cancer center and the U.
• 0:11
  K.
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  College of Agriculture,
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  food and environments.
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  Cooperative extension service.
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  We will share with you the latest developments in cancer prevention,
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  diagnosis,
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  treatment and research from the experts at Markey Cancer center,
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  Kentucky's only National Cancer Institute designated cancer center.
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  Talking FACS is hosted by the U.
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  K.
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  Family and Consumer Sciences extension program.
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  Our educators share research knowledge with individuals,
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  families 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 your host,
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  Dr. Jennifer Hunter,
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  assistant director for family Consumer sciences extension at the University of Kentucky.
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  Today I'm pleased to welcome Bethany Giles,
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  an oncology social worker with the University of Kentucky Markey Cancer Center.
• 1:00
  Welcome Bethany. thanks so much for having me.
• 1:03
  So today we're gonna discuss the topic of reccurrence anxiety,
• 1:08
  which I think will be a topic of interest to many of our listeners.
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  But I first wanted to ask you about your position within Markey as an oncology social worker and if you could just explain a little bit more to our listeners about about your role and what you do day to day.
• 1:25
  Absolutely!
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  So I am part of the psychoncology department here at Markey.
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  We are made up of 10 social workers and two dietitians and we really offer all kinds of support services for patients as they are going through care.
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  We often assist with concrete needs trying to remove barriers from care,
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  things like transportation or lodging for patients that may be from out of town.
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  I am also a licensed clinical social work which means I am a licensed therapist as well.
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  And so that is also part of my role and a service that we offer is we offer free therapy um from licensed therapist to our patients as well as caregivers have support groups.
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  So once again just all kinds of support services for patients um as they're moving through,
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  bear with us.
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  So Bethany one reason that I asked you to to share more about your role is because it's not a role that I was familiar with prior to us starting partnership with Markey on the cancer conversation podcast and I find it to be a really great service to be able to provide patients as well as families.
• 2:31
  But then I also have a coworker colleague that had a member of their family that was treated at Markey and the way that they spoke about the role of the oncology social worker and how much that the role helped them and their family process the cancer diagnosis as well as the treatment and just really walked with them step by step through their treatment.
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  I thought was really,
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  really phenomenal.
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  I think it's wonderful to be able to share that that position exists and the services that you all are able to to provide.
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  I'm so glad to hear that Yeah,
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  I'm just,
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  you could tell the the amount of anxiety that having that person on staff was able to provide that family.
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  And that's actually one thing that we're gonna talk about today is recurrence anxiety or kind of that fear or constant worry relating to in this case,
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  specifically the possibility of cancer that will come back or how cancer may progress,
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  etcetera.
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  And I just wanted to get started first by talking a little bit about,
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  you know,
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  what exactly is recurrent anxiety or recurrence anxiety and how prevalent is it?
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  Absolutely.
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  Um so just like you said,
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  it's really just this experience of anxiety,
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  worry,
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  nervousness that cancer will come back or that cancer will progress for someone that has already been diagnosed or urban through treatment.
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  And I'll say,
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  you know,
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  the numbers kind of vary in terms of statistics.
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  Um,
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  I I found some research that showed about 30 to 50% of patients can experience clinically significant anxiety about their cancer returning.
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  Um,
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  but I I would guess that that those numbers may be much higher.
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  Um,
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  you know,
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  we often talk about here in the clinic that when someone is diagnosed with cancer anxiety,
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  fear,
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  those are appropriate emotional responses to,
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  to go in through a circumstance like this doesn't make it any less uncomfortable or difficult,
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  but can just be really common.
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  And and one thing that we find is interesting is a lot of times we don't see a lot lot of that anxiety until someone has completed treatment.
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  A lot of the patients that I see for individual therapy here at marquis I often get after they're done with treatment and a lot of patients will share with me,
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  you know,
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  I thought I was gonna be okay,
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  I thought I was going to feel good and back to normal and um now I'm feeling,
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  you know,
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  not okay,
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  I'm feeling more overwhelmed than I was.
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  And we talk a lot about how often times,
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  you know,
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  when we're going through treatment,
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  you know,
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  we're in survival mode if I just gotta get through this,
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  I just got to get through today or my next radiation treatment or chemo or whatever it is and sometimes it's not till afterwards where our body is able to finally kind of take a minute and take a breath and we have a moment to feel our feelings that all of these feelings of anxiety can come in and it can be really overwhelming for people to try to work through and process and think how I'm gonna live the rest of my life,
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  you know,
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  trying not to to have that constant anxiety of cancer coming back.
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  I think that that explanation really makes sense.
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  I have a I have a friend that she often talks about go mode,
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  that when life throws something at us,
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  she's like you're in go mode,
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  you're in go mode.
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  And I think that that's kind of what you were just describing there is that folks are in go mode and it's not until maybe you can stop and just breathe a little bit and that you really begin to process the diagnosis or the treatment.
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  And I've thought quite a bit about this topic since we,
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  since we scheduled the podcast of that.
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  You know,
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  when you think about the prevalence that I just can't,
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  the concern,
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  the fear has to stay,
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  have to stay with folks even after treatment,
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  just always kind of that I'm sure maybe over time it might diminish,
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  but always that concern of the what ifs how might a patient help themselves cope with the recurrence anxiety.
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  Absolutely.
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  Um,
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  I think that's the good news is that there are quite a few things patients or even loved ones can do to kind of help themselves manage these feelings.
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  And the first thing that I always say to patients that I think is a really important first step is just being able to validate those feelings.
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  Like I said before,
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  we often talk about how feeling anxious is a normal human response when our safety or life is threatened.
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  And then that's what happens when we're diagnosed with cancer.
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  And so that would be always my first recommendation is be able to validate your own feelings that I've gone through something really scary and really difficult and it makes sense that I'm having a hard time.
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  One thing that I often talk about with patients as well is I can validate feelings even if maybe some thoughts I'm having aren't necessarily true.
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  So maybe my cancer won't come back,
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  but it still can make sense that I feel that way.
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  A silly example I often give is hypothetically if I was in a car accident today and I'm okay but you know,
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  it shakes me up and tomorrow I go to get my car and go to work um and I felt anxious.
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  I think anybody could validate that.
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  That makes me feel that way.
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  Yeah,
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  of course she's gonna feel that way.
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  She's gone through something difficult now.
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  Is it very likely that I'm going to get in a car accident again the very next day?
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  No,
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  I can still challenge that thought that that may not necessarily occur or be true or I don't have evidence to back it,
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  but I can still say,
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  yeah,
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  I've gone through something difficult.
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  It makes sense that I'd be having a hard time.
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  Some other things that I would often suggest to patients in therapy are really common type of therapy is cognitive behavioral therapy or CBT um We use it for all kinds of things.
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  The evidence based treatment,
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  but it's just learning to identify and often replace the untrue or unhelpful thoughts we may have regarding our cancer or recurrence.
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  So for example,
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  if someone is often finding themselves thinking before every doctor's appointment,
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  my cancer is going to be back.
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  I just know it's gonna be bad news or maybe every time they feel sick or don't feel quite themselves.
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  Oh,
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  no,
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  something terrible has happened.
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  That catastrophizing that a lot of us can do,
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  learning to kind of recognize when we're doing that and then just focus on replacing those thoughts with something that's just more accurate.
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  Um it doesn't even necessarily have to be super positive or no,
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  everything's okay.
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  It can just be,
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  I don't have all the facts yet.
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  I'll ask my doctor and see what he thinks or my last scan,
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  everything looked good and that's all the information I have to go on.
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  Um,
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  so really learning to challenge those untrue or unhelpful thoughts as much as we can.
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  Another recommendation I would always give is just to educate yourself through your provider or other trusted resources.
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  There are certainly some cancers that have a high likelihood of recurrence and there's some that are very low that it's not very likely at all that that cancer would come back.
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  And so I think just going from that standpoint of having good information and good education that if your cancer has a very low rate of recurrence,
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  that that can give us a little bit of confidence is it's not maybe something I need to to feel anxious or worry about so often would the tips be different or are there different tips in working with family members or a loved one when my son was very little he had a major medical event and it took me a couple of years to realize,
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  you know,
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  I knew I had stress and anxiety associated with the event,
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  but it took me a couple of years to realize I still have anxiety associated with this medical event.
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  And now,
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  you know,
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  he,
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  He's grown and a perfectly healthy young man at this point,
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  he's 17,
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  but he had to change doctors and we just did literally this morning,
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  his new patient appointment or whatever it may be.
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  And so the doctor had to go through his whole medical history and even then I had to say,
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  you're gonna have to bear with me just a minute on this story,
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  right?
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  Even though I know,
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  you know,
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  II know we're over it,
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  I know that it's not something that's gonna,
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  you know,
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  all those type things,
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  but in thinking about family members,
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  whether it's a spouse or a parent that's dealing with a child with a cancer diagnosis,
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  how common is kind of the reccurrence anxiety with them.
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  And are the tips the same about how to help them cope or are they a little bit different when I'm dealing with a family member?
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  I think that's a great question and I would absolutely say that it is very common as well,
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  just as you're describing that situation with your son that absolutely,
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  you know,
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  the caregiver,
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  although they're not having the same experience as the patient,
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  right?
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  Even though we know that's a different experience,
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  it can be traumatic in its own unique way.
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  And obviously when it's someone we really care about,
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  of course we're going to worry sometimes even more than we worry about ourselves.
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  We worry about them.
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  We see a lot of parents whose adult Children are are going through cancer treatment here for caregiver counseling.
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  So yes,
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  I would definitely validate.
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  I think that is a very common experience for caregivers and loved ones as well.
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  And I would say largely I would give a lot of those same recommendations about being able to challenge those thoughts that we maybe don't have the facts of making sure we're educating ourselves and also validating our own experience that I've been through something really difficult,
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  watching my loved one go through this.
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  It makes sense that I would worry about it happening again.
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  Another skill that I often recommend comes from a type of therapy dialectical behavior therapy called cope ahead and it maybe seems a little counterintuitive at first,
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  but it's this idea that for a brief amount of time and brief is the key word,
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  sometimes it can be helpful to think about that worst case scenario to think about what if a recurrence did happen again and the reason that it can be helpful is if we think about,
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  okay,
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  how would I handle that?
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  What would I do?
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  Because a lot of times I think when we don't entertain that we're sending ourselves the message of,
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  oh I couldn't handle it.
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  I wouldn't know what to do and sometimes if we,
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  we take just a few moments to think worst case scenario we realized,
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  okay,
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  well I would go to my doctor,
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  I would get treatment again,
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  I would talk to my family,
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  I would rely on my support sometimes for those brief moments we can reassure ourselves.
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  Even if this thing that I really don't want to happen happens,
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  maybe I could still be okay and putting a plan in place is what it really sounds like.
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  That.
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  If an individual has a plan,
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  it might help calm some of that anxiety.
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  What about if a patient does have a cancer recurrence,
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  how can you help them cope with the anxiety associated with that?
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  Absolutely.
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  So like we've talked about it is certainly not guaranteed or not even likely for so many people for cancer to come back.
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  But for some it does.
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  You know,
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  the first thing I would say that I think can be really important for patients themselves is to be intentional to avoid placing blame,
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  whether that be on themselves or others,
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  you know,
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  that can be a common reaction to anxiety that when we feel like our situation is out of our control.
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  Sometimes we reach out for control or wherever we maybe can and sometimes that causes us to maybe put unnecessary pressure or blame on ourselves or others.
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  An example I've seen of this often is you know,
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  maybe someone experiences a recurrence and so they have a lot of thoughts like,
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  oh well I should have gone to the doctor sooner,
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  I should have eaten healthier.
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  I should have been more active or I should have been less active.
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  Um,
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  I shouldn't have gone back to work.
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  You know,
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  a lot of those should,
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  that can just often be unfair judgements towards ourselves,
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  you know,
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  acting like we could have prevented the circumstance that in most cases was is not preventable.
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  Obviously we're always going to encourage people to practice healthy habits,
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  you know,
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  to take care of your body.
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  You know,
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  certain things that we know contribute to cancer recurrence,
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  like smoking or other substance use.
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  We're gonna discourage.
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  But I think that can be a really important point is to avoid that blame on ourselves or others.
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  And,
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  and then I guess my other thought would be in dialectical therapy,
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  dialectical behavior therapy I mentioned earlier.
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  Um,
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  there's another skill we use called radical acceptance and acceptance is something we talked about a lot over here in psychology and,
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  and in our individual sessions.
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  Um,
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  and it can be kind of a and feel like it's hard to graph sometimes it,
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  how can I accept that this thing that I really did not want to happen has happened,
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  that a key thing that we often talk about is acceptance is not saying I'm okay with this.
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  It's not saying I don't care or I'm giving up,
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  it's just acknowledging our current reality and that acknowledgement is what allows us to move forward.
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  Um if I don't acknowledge,
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  if I don't accept that my cancer is back,
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  I can't follow up with the treatments that I need or reach out for the support that I need during that time.
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  So certainly is a skill that is easier said than done.
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  But that idea of radical acceptance of,
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  I'm not saying it's okay or I don't care,
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  but as much as possible,
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  I want to fully acknowledge this is my circumstance.
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  What can I do next to take care of myself?
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  Can sometimes be a help helpful approach Bethany,
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  thank you so much for joining us today and bringing awareness and having the conversation about recurrent anxiety.
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  I think as we wrap up today,
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  one last question or information for our listeners that if one of our listeners is potentially struggling with recurrent anxiety or um I guess any type of anxiety,
• 16:29
  what would be a recommended step for them to take?
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  Absolutely.
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  So once again for any marquee patient and that includes patients and survivorship.
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  So maybe you received treatment five years ago but are still really experiencing things like this.
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  You have access to the psych oncology department.
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  Um like I said before,
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  we offer free therapy through licensed therapists,
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  We have support groups.
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  Um and those are for patients as well as their caregivers.
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  Um so certainly would encourage any patient or caregiver to reach out to our department.
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  Um you can do that either through your provider.
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  We are here in the clinics and available if you have an appointment or you can reach out to us directly.
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  I have the phone number 8593232798.
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  My other encouragement would be there are all kinds of community mental health providers.
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  If maybe we are difficult to access here in Lexington,
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  I will say we do offer a ton of telehealth services.
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  That's what we're doing a lot since Covid it's really branch set out,
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  which I think is great for accessibility for a lot of our patients that don't live here in town.
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  So we do offer telehealth,
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  but we can also help you connect with a provider closer to home.
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  If that would be more helpful.
• 17:43
  I really think any kind of mental health support can really be meaningful and absolutely warranted and deserved when someone's going through something difficult like cancer.
• 17:52
  Um once again,
• 17:53
  that anxiety can be totally normal and a normal human response.
• 17:57
  Um but it's always helpful to have somebody kind of walk through that with you.
• 18:02
  Excellent for our listeners.
• 18:03
  We will make certain that the phone number is linked in the show notes if that's something that they need to go back and and reference and I will agree with you on telehealth and number of barriers that it has reduced in terms of providing access to care.
• 18:19
  So certainly if someone needs that,
• 18:20
  we encourage them to reach out.
• 18:22
  Thank you again for joining us today.
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  Thank you so much.
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  Thank you for listening to cancer conversations on talking facts.
• 18:31
  Our goal is to connect you with the latest advances in cancer research in the commonwealth.
• 18:36
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  please message us on the UK Markey Cancer Center facebook page at facebook.com/UKMarkey Or visit our website at markey.uky.edu 300 00:18:52,370 --> 00:18:53,610 For more information,
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