Post-Traumatic Stress Disorder After a Cancer Diagnosis
Listen to the podcast to hear Kelly talk about:
what PTSD is, what causes it, and some of the most common symptoms of PTSD in people diagnosed with cancer
why people who’ve experienced trauma in the past may want to be proactive and schedule an appointment with a mental health professional or spiritual guide shortly after being diagnosed
when PTSD can happen
how PTSD is treated
three things people diagnosed with breast cancer should know about PTSD
For more information on PTSD in people diagnosed with cancer, you can read a piece Kelly wrote for the journal Oncology Issues.
Kelly Grosklags is an experienced therapist who dedicated her practice to minimizing suffering through her work in oncology, palliative care, and hospice. Kelly is a licensed clinical social worker, a board-certified diplomate in clinical social work, and a fellow of the American Academy of Grief Counseling. She is the author of A Comforted Heart: An Oncology Psychotherapist Perspective on Finding Meaning and Hope During Illness and Loss. Kelly now teaches and speaks frequently about end-of-life issues, including care, grief and loss, both in person, on her website, Conversations With Kelly, and on her Conversations With Kelly Facebook page. Her passionate and supportive demeanor helps patients, caregivers and health professionals connect with the wisdom of making life more meaningful, coping with depression and anxiety, transforming fear into hope, healing versus curing, and the wisdom of dying a good death.
— Last updated on June 29, 2022, 2:46 PM
Jamie DePolo: Hello everyone. I’m Jamie DePolo, senior editor at Breastcancer.org. Welcome to the Breastcancer.org podcast. For nearly 25 years, Kelly Grosklags has dedicated her practice to minimizing suffering through her work in oncology, palliative care, and hospice. An experienced therapist, Kelly is a licensed clinical social worker and a board-certified diplomate in clinical social work. She also earned a fellowship in grief counseling from the American Academy of Healthcare Professionals and is the author of A Comforted Heart: an Oncology Psychotherapist’s Perspective on Finding Meaning and Hope During Illness and Loss.
Kelly speaks frequently about end-of-life issues, including care, grief, and loss. Her passionate and supportive demeanor helps patients, caregivers, and health professionals connect with the wisdom of making life more meaningful, coping with depression and anxiety, transforming fear into hope, healing versus caring, and the wisdom of dying a good death. Kelly, welcome to our podcast on post-traumatic stress disorder (PTSD) and people diagnosed with cancer.
Kelly Grosklags: Thank you, Jamie. I’m honored to be here. I’m so happy that Breastcancer.org is committing time to the somewhat new phenomenon in the world of oncology, but not necessarily new for what people have experienced, but I think new in the sense of we’re paying more attention to it.
Jamie DePolo: Yes, that absolutely. To start, I think a lot of people have heard the term PTSD, most likely associated with people who’ve served in the military, but so can you kind of explain it just so everybody knows what exactly are we talking about and some of the causes and maybe go, I know there are a lot of symptoms, a lot of causes, but maybe go over some of the big ones.
Kelly Grosklags: Sure, so obviously PTSD stands for post-traumatic stress disorder, and you’re right, we are quite familiar with it in regards to hearing people that have had a traumatic car accident, have served in the military, been in the war. But it’s something that I think is very important to look at for people that are diagnosed with a life-threatening illness, or a life-changing illness, and today we’re talking about cancer, and specifically, breast cancer.
So I think what’s important to look at is what are the causes of it. Well, we do know that people that have had a history of any kind of other trauma, whether it would be a significant loss early on in their life — sexual abuse, a rape, been in the military, witnessed a horrific experience, an accident — are more likely to experience these PTSD symptoms when diagnosed with cancer. Because it’s anytime a new trauma is introduced into a person’s life, old wounds or old traumas can get revisited. And so if you are diagnosed with cancer and you already have a history of experiencing trauma, it’s something you’re going to want to talk to your provider about right away. You’re probably going to want to address it out of the gate immediately with a mental healthcare professional.
We also know that people that suffer from anxiety disorders, whether it be OCD, eating disorders, clinical depression, also are at a higher risk of developing some PTSD symptoms after being diagnosed with cancer.
Now what are the symptoms? You’re right. There’s several symptoms. Some of the main ones that we see are shamefulness, guiltiness, what I often see is people can be emotionally numb, but they can also feel restless and jittery and very hypervigilant. So hypervigilant meaning they get scared easy, they hear a noise, it kind of makes them jump. Also, they’re very hypervigilant about their body, so any symptom, any new experience that might be going on in the body, can be very alarming and very scary to people that are experiencing PTSD symptoms. And flashbacks are also very common, where people start to have flashbacks of previous traumas. So they may be diagnosed, and then all of a sudden people are wondering, why are they thinking about when they saw something traumatic from when they were 5 years old?
That is not uncommon, but it is definitely something people should pay attention to. Some people can become more avoidant and not wanting to talk about or have conversations about their cancer. They will do anything to avoid it, including sometimes even going to their medical providers.
So if you’re a provider listening today and you have a patient that is being avoidant — missing appointments, or coming in significantly late and those types of things — sometimes we need to look at is PTSD going on.
Jamie DePolo: Are those symptoms particularly common in people who’ve been diagnosed with cancer or is that PTSD in general?
Kelly Grosklags: You know, in general, but I will say what I often see with people who have been diagnosed with cancer, is I do see the jitteriness a lot. I see the anxiety, the inability to sleep, nightmares, a lot of hypervigilance. And that can go on. We don’t diagnose people with PTSD symptoms unless they’ve been experiencing these for at least a month.
Sometimes people will have some of these things right out of the gate at diagnosis but they subside. And that’s probably more of a natural kind of reaction of anxiety. But if people are experiencing things for at least a month, we want to start looking at, is this PTSD? In regards to cancer specifically though, I see more of the anxiety presenting. Sometimes people can go in and out of being numb, like “did this really happen,” it’s very surreal, but more so where they’re anxious. They’re anxious about their future, they’re anxious about dying, they’re anxious about symptoms in their body. They’re in trauma mode. Sometimes they’re coming in, they haven’t slept for 2 or 3 nights, they’re having nightmares about dying, they’re having nightmares about body parts being amputated, they’re much more in a higher state of anxiety, is what I tend to see with cancer.
Jamie DePolo: Ok, thank you, that’s helpful. Now, there is still stigma surrounding any sort of mental condition. So I’m wondering, do people, I guess I have two questions. Do people even consider that, like me, I’ve been diagnosed with cancer, I might have PTSD because of what’s going on. I’m not sleeping. I’m anxious all the time. And then, at the same time, is it hard if someone goes to their doctor to get diagnosed? Are oncologists aware enough of the condition and how it presents, that people are being diagnosed with accuracy and regularity?
Kelly Grosklags: You know, I recently just wrote an article for providers about the trauma of cancer and PTSD, and the feedback that I was getting from providers is that it was a learning for them, that no, they don’t necessarily go down that route of post-traumatic stress. They look at it more of well this is natural. You know, she or he is having an anxious reaction to this.
So again, I think it’s catching on. I don’t even think patients themselves realize the significance of their symptoms to the point of maybe they’re experiencing some PTSD. I think people tend to… because well-intended support systems, even medical professionals, will say things like, “Well of course you’re anxious, you’ve had a major life change.”
And you know, whether we end up treating it the same or not as anxiety isn’t the issue. It’s that when I name for somebody that they have had a trauma by being diagnosed with cancer, and especially the advanced stage cancers or the metastatic cancers, when I say to somebody, “This is a trauma and what I see you experiencing are similar symptoms to PTSD,” more often than not, I will sense relief from the person because they everybody wants a name for what they’re experiencing, right? So they want it to be named. And it makes sense to them, and then when they start studying the PTSD it starts to make sense to them. They’re like, “Okay, so I’m not just not coping well with this, because people in my support group look like they’re doing better than I am,” and on and on and on.
And so I don’t think the stigma only comes from the society, I think individuals stigmatize themselves. And so that that’s a real big barrier to treating this, is because people will say things to me like, “Well, you know, it could be worse,” or “people have a lot people have things that are a lot worse than this.” And what I always say to people is that your individual traumas are as bad as they are for you, and that we don’t line up the traumas on a line and compare them. I think that is a dangerous way to look at traumas for people. I think if people are experiencing significant symptoms, significant fears, significant sleep issues, and they’re in trauma, whether it’s — they didn’t see somebody being shot, or whatever — I think we have to name it for people and we have to honor it for people.
But where it has to start is, the person who’s living with the cancer has to honor it themselves, because when they start minimizing it and start feeling shame about it or start saying things like “well it could be worse, people have it worse,” that’s a barrier, if that makes sense. That’s a barrier to them being honest with what’s going on and us getting them in the right channels for help.
Jamie DePolo: That makes a lot of sense because as you said, it’s not a trauma competition. I mean, trauma is trauma, and it’s horrible no matter who it happens to or what it is. And if you’re experiencing trauma, yeah, you should be allowed to get help. You don’t need to brush it under the rug and say well other people have it worse. No, you had something bad happen to you and you deserve help, you’re worthy of help.
Kelly Grosklags: I think people with cancer treatments can respond better when the mental health component is being addressed, so if we’re not addressing the trauma of the diagnosis, and we’re not going after the symptoms of that, we may start to see that people are not responding as well to their therapy, their chemotherapy, their immune therapy, because the person is made up of a mind, a body, and a spirit, and we need all of it aligned in order for there to be wellness in the body.
So one of the things is another “selling point” to look at this is that we actually can see some improvement in people’s treatments and the response the cancer may have to the treatments if we’re also addressing the mental health component of it.
Jamie DePolo: That makes sense. As you say, because you are a mind, a body, and a spirit, so treating all three would make the body more whole than just treating one, so that makes perfect sense to me.
Kelly Grosklags: That’s exactly it, and you know, so much of what I see also, Jamie, with the PTSD component, is the unknown. People are so fearful of the unknown because in PTSD people feel very out of control. And there are many unknowns that people are forced to live with in the cancer treatment world. I mean, whether it’s going to work, whether it’s going to recur, whether it’s going to metastasize, whether they’re going to get sick, whatever it may be.
And that can make people become even more hypervigilant because they’re just living in this chronic kind of adrenaline-releasing state of “what if, what if, what if not…what if not, what if not….” And you know, again, if you’re a provider hearing this and you have a patient that is presenting with the constant what if, what if, what if not, what if not… it would behoove the patient to refer them to somebody trained who can rule out if PTSD is going on.
Jamie DePolo: That makes sense because if you think about it, if you’re… it’s almost like the person would be living in a constant fight-or-flight state, which you know, research suggests that that makes more inflammation in the body, which takes a huge toll on everything.
Kelly Grosklags: Well, and we know that 1 in 4 women diagnosed with breast cancer are at high risk of PTSD, so that is a very high statistic. And again, we go back to looking at what is a person’s trauma history? What is a person’s loss history? And if there is a trauma in the history, it would not surprise me if that trauma and this would start bumping together and we’d start seeing more symptoms come up.
So again, I think the really important thing though is that people honor what they’re feeling and that is included even if you are diagnosed and you have an early-stage cancer. You know, I will often hear people say, “I don’t know why I’m reacting like this because my friend has mets all over her body and that’s much more traumatizing.”
Well again, everybody is an individual. And I can see people with very advanced disease that aren’t traumatized by it. You know, they’re sad, they’re tired, they’re struggling, but they don’t necessarily fit the PTSD category. So we can see people with advanced disease that are coping ok, and we can see people with early stage that are completely traumatized. Again, I don’t think anybody should be comparing.
I think the best way to get through this and to heal it is to honor what’s going on. And again, if you have a history of anxiety or depression or some type of trauma previously, even if your statistics for cure are high, you may be experiencing PTSD. You know, it’s not for this podcast, but there’s a lot of implications about people’s different brains and how they’re developed, and what areas in the brain will trigger trauma. And some people’s brains are underdeveloped in that area or overstimulated in that area, and so there’s a lot of different biological reasons, also. But it is as real as nausea is in cancer.
I mean it is as real, and I think not only are we seeing advancements in research for treatments coming up in the next few years, I think we’re going to see a lot more positives coming up with the mental health component, too, because we’re paying attention to it.
Jamie DePolo: Can PTSD, obviously it can come on fairly soon after a diagnosis, just the shock, oh my goodness. Does it ever develop late, where say somebody has been diagnosed with early-stage disease, goes through treatment, it’s been say a year or two, can it ever come out later like that or is it pretty much close to when the diagnosis happens?
Kelly Grosklags: So again, it’s all individual, but yes, it can have a delayed onset, it can happen months to a year or even more. It depends on the individual. It depends on… you know, when I’m working with people who are in, let’s say they’re in IV chemo, and they cannot wait to be done with it. They’re just counting the days down. I will say to them that as great as that’s going to be, that is often the time when people start realizing the magnitude of what’s happened because you have to go into this treatment mode when you’re first diagnosed.
And there’s a lot of people surrounding you. There’s a structure, there’s a protocol to follow, people feel like they’re doing something about it. And then once things can settle, or if treatment stops, that is a high-risk time for anxiety to come up or for people to realize the magnitude. So yes, it absolutely can come up months to even a year or more later.
Now, I again would like to say, if you are diagnosed and you have a history of some trauma — and again, that can be a multitude of things, but something that was traumatic that affected you — it would be in your best interest if you’re not in with a mental health professional or a spiritual guide of some kind that you would start that even if you’re not feeling the symptoms. Because to be proactive would actually be a very good thing to do, if you have a history of depression, if you have a history of anxiety, or if you have a history of some type of trauma, and you receive a diagnosis of cancer.
I know it’s one more thing to do, but it may be the best thing you can do for your long-term health, is to get in and start talking about the fear of this, start talking about the implications, how has this affected your life, and being proactive rather than reactive to the symptoms.
Jamie DePolo: That makes sense. And it also makes sense, too, that people who have been diagnosed and treated and maybe they’re 2 or 3 years out of treatment, if they do start feeling overly anxious or maybe start having flashbacks to diagnosis, to take that seriously and talk to somebody about it because it could be, as you said, the delayed onset.
Kelly Grosklags: Absolutely, and people are scared to go in because sometimes they’ll say, “I don’t like meds, I don’t want to go on meds.” Well, meds is one component of treating them.
Now, it is pretty common, at least short-term, that people are going to need some kind of antianxiety or antidepressant medication if they’re in an active state of PTSD. Combined with psychotherapy, combined with, if people are faith-based, there’s research about faith helping, support groups, communities of support.
All of those combined are the key to treating posttraumatic stress. And yes, I see people healed from it all the time, so I want that to be a hopeful thing. The sooner people get it addressed the better, because again, if we let a body go through this kind of hyper… a lot of cortisol releasing, and there’s constant fight or flight, and people are trying to push it down and push it down and not acknowledge it, the longer that goes on, the longer it’s going to take to treat it, the longer the suffering will be. And traumas aren’t something we necessarily deal with once and we’re done. We all have these wounds within us that as we’ve grown up, we’ve had to deal with, and one trauma can open up another one, and sometimes there’s things within a trauma that we have to go back and heal.
And that’s why some people will say to me, they’re so surprised because their cancer is, even if it’s stage 0, and they needed minimal treatments, they are just completely floored as to why they’re cut off at their knees and they’re not functioning. Well, we start to go back and realize that oh, there’s something from the past that’s coming up that needs to be looked at and some more work has to be done on it.
So the energy should not be spent on the whys, “Why am I doing, why am I…,” you know, in judging oneself, the energy should be spent on the healing component of it and getting connected with the right people that can help you in your healing.
Jamie DePolo: Oh, that’s so smart. That makes so much sense. Now, you mentioned earlier that up to 25% of women diagnosed with breast cancer were at risk for PTSD. Do we have any stats on how many people who’ve been diagnosed with cancer have been diagnosed PTSD? Do we know that?
Kelly Grosklags: I don’t have specific… I am doing some research on that right now, but I don’t have specific stats on that. My sense is it’s low right now because I think what people are getting diagnosed with is anxiety disorder, you know, or adjustment disorder or situational depression. I think that’s more common. But in terms of an actual PTSD diagnosis, I don’t have those actual statistics. But again, I’m hopeful that as we go forward we’re going to start paying more attention to it.
You know, it truly has been something that, for the most part, at least, this has been my practice. Now I’m just one person in this big world, but in my practice, it is self-affirming for people when I have called it what it is, if it’s a trauma.
If I’m seeing them — again, not everybody — but I was reading something, about 1 in 4 women have the potential to display these symptoms. That’s a large amount, I mean that’s a large amount. And I suspect it’s even more than that. Because I see it higher in my practice than that. I see it, and it’s not only women, it’s also the men that are diagnosed. I mean, it’s a time. Now again, initially, most people are going to display some of these symptoms. We have to kind of let it ride out for a month, at least under the diagnostic criteria, and see if it continues. And after a month if we’re still seeing some of these things like flashbacks, nightmares, eating changes, sleeping changes, jitteriness, anxiety, or even somebody that’s completely numbed out for a month, avoiding… if that’s going on a month after a diagnosis, it definitely needs to be worked up for posttraumatic stress.
Jamie DePolo: We talked a little bit earlier about how perhaps not all oncologists or doctors are aware that PTSD could be out there. Do you think patients think about that at all? Do they think that that could be a side effect?
Kelly Grosklags: You know, I’ve seen in the last just 6 months to a year… and women with breast cancer tend to be highly educated in their disease… I’m impressed with how people can navigate their way.
I know Breastcancer.org is a huge resource for people. They are empowered. They know how to ask their questions. If they’re in support groups, they empower each other. So I’m seeing that women are starting to name it more just in the last 6 months to a year.
Now, does that mean every woman, no. And that’s just my experience in the Midwest here, because once somebody says it in a support group and it resonates with somebody else, and then they go do research on it, then that has a ripple effect. Then they start talking about it. They start writing it in their CaringBridge.
Somebody reads that, and they’re like, “Oh my gosh, could this be what’s going on with me? It’s not just that I’m a wimp and I can’t cope with this. There’s a true physiological thing going on with my body.” And there are people that liken cancer to a war, there’s a metaphor that some people will use, and so it makes sense.
But I would say probably more than half of my patients are aware of it, but that’s just because it’s been something I’ve kind of been dedicated to for the last year and a half to 2 years of really naming what it is. Like oh, this is beyond just that kind of expected reaction that we would expect to see somebody have after a diagnosis, where they’re anxious, they’re scared, they’re fearful. This has gotten into something… and then especially if I know that a person has a significant history of trauma or loss, I’m going to be looking for this to get retriggered.
And so again, I think it’s great that you are doing this podcast because I think that people should be researching what is PTSD. I think they should be talking to their providers about it and talking in support groups about it, you know, have other people been experiencing these things?
One of the things that’s so hard in mental health is that people are so isolated. I’ve had many of my patients say that they’d rather have a bad day physically than a bad day mentally because physically they can talk about it, people will have empathy for it. There tends to be something we can take for immediate relief. Very different with the mental health component of it.
So that’s why I say I’m wondering if it’s even more women are at risk of PTSD since they’re not talking about it to their providers and to their communities, because they’re ashamed.
Jamie DePolo: Which is a component, a possible symptom, of PTSD as well.
Kelly Grosklags: Exactly. That’s exactly it, but when we name things we are empowered, and when we name things it gives it knowledge, and with knowledge we have a plan. I’ve seen people feel better within 2 to 3 weeks after we start treatment for PTSD because we can get… it’s really hard to do the work around the trauma when somebody is so escalated in their anxiety. I mean, you almost can’t, because you’re just adding trauma to the trauma. But we have to try and get people’s anxiety down, if they’re in kind of a numb, depressed state, we have to work with the brain chemistry and try to get that balanced.
I wish every practice in the world had an oncology psychiatrist because I just think it’s such a rare specialty but it is possibly one of the greatest assets that we can have, is somebody that specializes in psychiatric meds but also knows how it interacts with different oncology, hematology meds and what somebody going through cancer is experiencing.
Jamie DePolo: You talked a little bit earlier about treatments for PTSD. Could you kind of go through that in a little bit more methodical way? And then I’m also curious, does it ever resolve on its own, or does it almost always need some type of treatment?
Kelly Grosklags: In my experience, it needs some type of treatment, particularly because, again, my experience is with the cancer community. So, particularly because we are constantly putting people back in that place of trauma. So you get diagnosed, then you gotta go back for your appointments, then you gotta go back for your treatments, then you gotta wait for your scans, so it would be very difficult for this type of PTSD to resolve on its own because they are constantly getting re-emerged into the trauma itself. So if somebody witnessed a car accident and they’re experiencing some of the symptoms, can that go away? Yes. You know, maybe with talking through it a couple times.
But in terms of cancer and what we’re talking about today, I think in my bias it needs some form of treatment because again, some people are in this, especially with metastatic, you’re in it forever. You’re constantly going back to that place of trauma, and so the first thing would be is that providers refer somebody to a mental health practitioner who can assess and see if this person qualifies under the diagnostic manual, the DSM, for what we would consider PTSD.
And then secondly, a conversation should be had, if the symptoms warrant medication, then probably the quickest thing to do is refer them to their general practitioner. But the ideal thing to do would be to refer them to psychiatry because sometimes with PTSD we need a couple different combinations of medications, and it needs to be very thoughtful about what medications based on what their chemo treatments are or what their cancer treatments are. So that would be something that would be important.
Now, if people are having high, high levels of anxiety where they can’t function, I definitely have wonderful oncology colleagues here in the Midwest that will prescribe something initially just to help the person settle down, and that’s probably the wisest thing to do is try to get the person to settle down.
And then, once people start feeling better from a physiological standpoint where they are calmer, more focused, less hypervigilant, that’s when the talk or the psychotherapy can be more helpful. And you’d want to find somebody that has good experience with trauma but also that has experience with cancer because again, people with cancer, they often can get retriggered.
Now just because, scanxiety, let’s say. That doesn’t mean they’re going to go into full-blown PTSD, but it can bring up some of those feelings, and it’s good to have somebody kind of talk about it. Ok, how do we work through this? How do we manage this? So you can have these similar feelings come up, but it’s not always a full blown PTSD after we’ve done the treatment.
There’s a fair amount of anxiety that I would expect any time somebody goes in to have a scan, any time somebody changes treatments, anytime… We don’t necessarily label that as PTSD, but I think if I had my way, everybody that gets diagnosed would have at least some kind of work-up from a psychological, spiritual standpoint. I just… it would be, to me, it would be the comprehensive care that we can provide, it would be the perfect world. We all know we don’t live in that. But I think if you get anything out of this podcast, it would be that yes, getting diagnosed with cancer is traumatic. And the level of it being traumatic for you will depend on multiple things. The best thing you can do for yourself is not judge it, not judge yourself, not judge others who are experiencing this, and to be honest and authentic about it, and talk about it in your medical appointments just as much as you’re talking about your physical symptoms. Because the sooner we can look at this, the better people will feel. And then again, I think, the better the treatments will react.
If you are diagnosed with cancer and you are at risk for having depression or anxiety or have had a previous trauma, I would encourage you, if you are not already in therapy, to seek out and be very proactive. I would also let your provider, your oncology team, know that you have had significant trauma in your past, and that that may start to present itself as well.
Jamie DePolo: Kelly, thank you so much. Those last checkpoints, checklists almost, I think are so helpful. I always appreciate your insights and your caring. It’s great to talk to you, and I’m sure I will talk to you again in the future, but I think this will be really helpful for people, both people who’ve just been diagnosed and maybe people who were diagnosed a couple years ago and can’t figure out why they’re still feeling so anxious. So thank you.
Kelly Grosklags: Well, and the fear of recurrence. That’s another big thing with PTSD. So please talk amongst each other about it. It will help you to not feel… There is hope. It’s treatable.