Scott Webb (Host): A breast cancer diagnosis can be frightening for patients, and there can be many physical and psychosocial effects for patients as they battle cancer. My guest today, psychologist Dr. Lucinda Quick, wants breast cancer patients to know that the range of emotions that they will likely experience in their journey are all natural and help is available.

 This is Flourish, the podcast brought to you by PRISMA Health. I'm Scott Webb.

Doctor, it's nice to have you here today. We're going to talk about the psychosocial aspects of dealing with breast cancer. And I was mentioning to you that I've done quite a few on breast cancer about sort of the physical effects and breast cancer surgery options and so forth. So nice to come at this from a little different perspective and just want to know, generally speaking, how does being diagnosed with cancer affect people psychologically, emotionally, and so on.

Lucinda Quick, PhD: You know, there's not one response set for people being diagnosed. So I'll talk about what's typical. And what's typical at diagnosis is distress, as you could imagine. There's so many unanswered questions and I think for a lot of patients, the initial aspects of being diagnosed with whatever cancer, is this feeling of the rug being pulled out from under you because you have an immediate change in what you're focused on, a sense of being overwhelmed by, by the idea of being sick and also the changes to your life and lifestyle that come up. You know, you're going to the doctor more, you're meeting teams, you're figuring out plans. There's tests scheduled that, and particularly if you haven't had medical illness in the past and you're being faced with things you're not familiar with, like feel intimidated by all this machinery or medical professionals and so forth. So, some level of distress. For some people it can be debilitating. For other people who have had medical issues before, it may not be as difficult to cope with. But that level of distress is a major thing for most people at diagnosis, particularly also if there is also a pre existing mental health issue like depression or an anxiety disorder.

Host: Yeah, I see what you're saying that it's definitely not a one size fits all. You give us sort of an overview of, you say, yeah, you say these are the typical things that folks feel and go through. I just want to have you just delve in a little bit deeper to the psychological effects of cancer. Like, we know what the physical effects are, I think, generally, but what are the psychological effects really?

Lucinda Quick, PhD: They vary widely, but I'll talk about what I've seen in my practice and what the literature talks about for patients undergoing cancer. The psychological effects don't happen in a linear way necessarily, but at different stages. So I talked about how overwhelming it can be at first.

Typically, after patients become educated about what their cancer is and educated about what's going to happen, they become familiar with their treatment providers, develop that trust, and get going on their treatment; they feel a lot better. And then psychologically though, some of the things that happen that can be very difficult to cope with again are, from the mundane to the really, scary, and, one of the biggest things is changing treatments.

One of the biggest areas where we see distress and difficulty rise is when treatments change, so you may start with chemotherapy and then move into surgical environment. And so, every time you change what's going on, or there's a change made, it brings some anxiety. The unknown provokes an anxiety response.

 Also, fear and anxiety can really come up in the form of anticipatory anxiety when getting an assessment or test. So you had this done, you're going to have a CAT scan or a PET scan or some blood work to see how it worked. And having that work done and then waiting on the results can be a really a time of great distress.

All of the psychological effects of cancer are not related to just distress. People feel all kinds of things and as you move through cancer treatment, and your life is changed, you may not be able to work for a time or you have to figure out maybe how to talk to your children.

This disease can affect whole families, it's not just a one person disease, so things in the family can change a lot. It's a lot of change and a lot of coping, so depression can be a typical response to the longevity and all the costs and losses that can be associated with cancer.

I find that people are very resilient and really good at managing what they know about, so while they're working on their cancer treatment. When there are unknowns, I think it gets much harder, uh, for them. So, I think, when teams do a really good job, and I, and I'm really happy to say I think we do a really good job of making sure our patients are informed to the level that they want to be and educated about illness and about what's going to happen, I think we can mitigate, to some degree, the psychological difficulties that come up with cancer, but they're there, they're a part of the typical response, they're not in any way abnormal.

Host: Yeah, and that leads me to my next question because I'm assuming, Doctor, that it's just totally normal to feel angry while you're fighting cancer or after being diagnosed. I'm assuming that when we think about the emotions that folks are going to feel, anger, that's okay, right?

Lucinda Quick, PhD: Anger is a regular hardwired emotion, you know, it's connected with perceived threat and with loss, so this disease poses, you know, or any chronic illness or diagnosis can feel threatening. Yeah, I'd say it's really normal and typical to feel anger. And if you think about losses, when we grieve loss, any kind of loss, loss of a body part, loss of that feeling of safety in one's health, in vitality and longevity, you know, just from having their first chronic illness and that part of that grief may be related to some feelings of anger and sort of questions like why did this happen to me?

Host: Yeah, why me? Right.

Lucinda Quick, PhD: Right, and the anger can actually help at times. Anger can help motivate. You know, we see the t-shirts for people fighting cancer and seeing cancer as the enemy and, having a gathering of people and loved ones that are aimed against the cancers, it can be very helpful.

Host: Yeah.

Lucinda Quick, PhD: Prolonged anger and unprocessed or untalked about anger, angry feelings or anger related to some unmet need, that can be more difficult and can be not helpful for the patient, but in general, yeah, anger I would say is very often a part of the psychological response to cancer.

Host: Yeah, it also sounds like depression and anxiety, those are totally normal. You know, I know we're sort of speaking, kind of thinking about the average here, the typical here. So I'm assuming depression, anxiety, that's pretty normal for cancer patients?

Lucinda Quick, PhD: It's something that happens a lot. I wouldn't say that it's the normal response, but it happens a lot. More likely to be a problem if people, again, have pre existing anxiety or depression. And or if their support system or their support network and other resources that are helpful in addressing cancer aren't there.

So, for example, if you have a patient that's diagnosed with cancer who also has financial difficulties and needs to work, who also is feeling very fatigued, who may have difficulty with transportation, so many things that become more difficult because of the cancer; you're going to raise the risk of depression or an anxiety response.

Or a lot of times, people have memories of cancer in others that can increase feelings of anxiety and or depression.

Host: Interesting, yeah.

Lucinda Quick, PhD: So if a parent had cancer or they're thinking of a difficult ending of life for somebody, a grandparent or something that is remembered. And in fact a lot of psychological responding has to do with how we perceive a cancer. At just the word cancer even can conjure up, for me, I'm beyond 50.

Host: Right. As am I. Yes.

Lucinda Quick, PhD: So, I often talk with patients who remember in childhood their parents would whisper, you know, that someone has cancer. Well, neurolinguistically, we are as children starting to see the word cancer as meaning death or really horrible. It's a horrible thing, when in fact now cancer is seen more as a chronic illness. We have so much more to offer our patients now, that many people live having been treated for cancer and do well. So, sometimes even our perception, even unbeknownst to us, how our brain processes what cancer is, can affect our anxiety levels and mood.

So, yeah, it's complicated, but the bottom line is, when you're going through hardship, you're way more likely to experience mood and anxiety. Luckily, there's a whole field of psycho oncology now, working really hard to develop specific responses for patients who are experiencing cancer related to depression related to cancer, or anxiety related to cancer. Another note that I think is very interesting is, with cancer patients, particularly those that are being treated like with chemotherapy, often many of the symptoms we would look for in depression are also the same symptoms that the medication can produce. So fatigue, low energy, lack of motivation.

Those are some of the things we talk about with depression that also can happen in cancer patients when they're not having depression. So, yeah, so it's incumbent on us to be really, take a lot of care about what depression is for the cancer patient and how to differentiate.

Host: Yeah, and along those lines, I'm wondering, makes me think, like, when should patients speak with doctors or family members speak with doctors about treatment for depression, anxiety, or other mental concerns after a cancer diagnosis? Is this something that we want to try to get out in front of because maybe we have a family history of cancer or, you know, a personal history of some, you know, mental struggles? Like, what do you recommend?

Lucinda Quick, PhD: Out in front of is a great term. The NCCM, which is a group that helps with guidelines around cancer treatment, has worked to set psychosocial guidelines saying that it is really important to assess and manage distress early on and throughout cancer treatment. In fact, here at PRISMA we use a national tool called the Distress Thermometer to kind of give us information ongoing with patients.

It's sort of like getting your blood pressure taken at the doctor's office. We also assess for distress so that we can intervene as needed and desired early and often. And distress can take a lot of forms, right? If I don't know how I'm going to get a ride to treatment, that can be distressing.

If I'm afraid to talk to my children about what's going on, or I don't know the right way. If I'm frightened about pain, or being sick that can cause distress. You know, there's so many things that can come up and different ways to approach it. Doesn't always take a psychologist. Sometimes just getting a sense of how I'm gonna get to treatment and back or talking to others about it or how I set boundaries with people who are well meaning but say things or do things that aren't helpful for us.

So, we all believe that early and often is better. In fact you don't have to have a diagnosis of depression or anxiety to come and talk about the distress you're having as you're going through cancer treatment. It's really great if people cannot feel stigmatized by coming to talk to a mental health professional, and, we try to make the connection with psycho oncology warm and part of usual care versus sort of uh, referral to another professional.

So, most cancer centers have behavioral health professionals on site as part of the team. It's just part of the routine care that patients are offered and it seems to work really well that way.

Host: Yeah, I just sort of putting myself in the place of a patient thinking, you know, that kind of one stop shopping, if you will, and not having to go somewhere else, as you say, get a referral, go see this person at a different site. You could see how that would be a comfort for patients and families.

Lucinda Quick, PhD: Absolutely. Absolutely, and also, there's a psychological benefit from feeling you've got this big team that they, each of them know what's going on. The providers know one another, the mental health or psycho oncology person knows your oncologist, knows your radiation therapy technician, like we know one another.

It has a different feeling about it, and just logistically speaking, if you're coming every day for radiation therapy, to think of going across town to see another provider just can become too much.

Host: Mm hmm. Yeah, as you were saying here along the way, you know, more and more folks are living with cancer, are managing cancer, are surviving cancer. No one ever wants cancer, but there's never been a better time in terms of the science, the medicine, the technology, the care, all of it. Just want to talk a little bit about what happens during remission or after treatment ends? For the average patient, does the psychological and emotional distress continue or does that begin to, you know, subside a little bit?

Lucinda Quick, PhD: Well, we're learning a lot more in recent years, about what happens in survivorship, and you know, go back to saying it's different for everybody, but one thing that we are learning to get better at is helping patients deal with the psychological during survivorship. So, for a lot of patients, what happens is, you start doing your treatment and these wonderful physicians and nurses and nurse practitioners and technicians are helping you through.

So you're going to get your infusion, you get to know your nurses, your infusion nurses, and you get to know all of the people who are working with you and they're your team and it feels good.

And you

Host: A lot trust right?

Lucinda Quick, PhD: Right. And you're sort of changing your daily schedules, your way of life, to really focus in. So you've got a lot of energy focused toward fighting cancer, and you're doing that. And it takes up a lot of your mental energy, and psychological energy, and then, you get done and maybe you get to ring the bell after you're finished with radiation therapy and you hug your providers and you, there's this expectation that it's going to be a happy, happy time and it can be a very happy time. But also many people feel at that point like they kind of I feel like they fell off a cliff because without realizing it, they've gotten very, very comfortable and used to their team, their resources here, being regularly seen. It's a comfort, and also sometimes there's a delayed psychological process because you're so focused on what's going on in your treatment that it takes a while for your brain and your head to wrap itself that this was really traumatic. So, we're getting better at educating patients that if you don't feel like you want to turn cartwheels when survivorship starts like you thought you would, that is perfectly reasonable and natural.

And there's a lot of continued healing and processing that goes on after that. Many people have to grieve a lot of loss. Maybe some loss of functionality. Maybe the loss of a body part. And figure out what that means for them. And that's not a quick fix always.

Host: Yeah, as you say, when it comes to grief, maybe even just grieving, as you're saying, like sort of the loss of these trusted medical and mental health professionals that have been a part of your life for so long, right? Just grieving not seeing them, not interacting with them, right? Some folks may turn cartwheels and others may need to grieve a bit.

Lucinda Quick, PhD: Yeah, I think there's an ambivalence. It's like I want to get out of here. I don't want to see these walls one more time, but this has been a really important part of my healing, of my getting rid of this, or fighting this, or getting a management going for this, so yeah.

Host: Yeah. For sure. It's been a good conversation today, sort of a range of emotions, but mostly a smile on my face just hearing about the wonderful care that patients and families get there at PRISMA Health. Just want to finish up, just talk about some of the challenges maybe in caring for distress in cancer.

Lucinda Quick, PhD: I think you would get different answers depending on who you ask. But speaking for myself and for actually for groups of us that work to make sure we're addressing all populations and in the different ways that people need care, help, resources, I think, one of the challenges, like I mentioned is when patients may feel it's stigmatizing to see a mental health professional, like, I wonder why they referred me here, right?

Do they think I'm crazy? Some people still experience that stigma associated with behavioral health, so that can be a challenge. Also, again, when patients are receiving a lot of care, and have a lot of medical appointments and are also managing, you know, family responsibilities, it can be a challenge for them to get in to see a behavioral health staff member. Cost is an issue. Staffing is an issue nationally. We're about, I think, 80 percent underfunded in mental health care nationally. And that's not just for cancer. So, getting enough professionals and changing systems, I think, is another, issue. So, integrated health care, where mental health is an integrated part of the setting, whether it be a primary care office, a pediatrician's office, or oncology, is really involves a change in culture, in a different way of looking things, where everybody owns the patient's psychological care, and everybody owns the patient's physical care.

So, I might work with a patient that's struggling to get enough nutrition or enough calories in with weight loss, and do some behaviorally oriented stuff, and the nutritionist would work with that too. And, by the same token, a physician will work to help patients feel calmer about what's going on, to address any medication they can use to help with depression and anxiety as well as I.

And so I think the challenge for us moving on is going to be how to improve that integration, how to use technology to reach patients, and also how to start and I'm not the expert on cost and care, but really, cancer is a family disorder, and so we know from research that it is incredibly important to be providing support and care to caregivers who are caring for folks that are going through cancer treatment. And really need a lot of help. That is a very stressful position. Some of our caregivers could be 20 years old. And so, as you might imagine, there's a lot of support that needs to be had there. And we kind of need, as a system, to figure out how we best provide that support in a cost effective way to families. Because in the long run, the better able families are to to give caregiving support, the better outcomes we're all going to have.

Host: Yeah, that's perfect. As I said, you know, it's a lot to take in here today and I've focused a lot in other podcasts on the physical side, the physical cost, if you will, and considerations of cancer. So it's really nice to be able to think about the other side of this, the psychosocial, the psychological, the emotional, and go through all this with you. So thank you so much. Appreciate your time.

Lucinda Quick, PhD: Oh, you're very welcome.

Host: For more information and other podcasts just like this one, head on over to prismahealth.org/flourish. This has been Flourish, a podcast brought to you by PRISMA Health. I'm Scott Webb. Stay well.