Dr. Donald Rosenstein is a professor of psychiatry and director of the Lineberger Comprehensive Cancer Center Comprehensive Cancer Support Program at the University of North Carolina at Chapel Hill.
Dr. Rosenstein’s research focuses on the areas where medicine and psychiatry meet. His research interests include assessing and managing suicide in the medical setting and psychosocial support for patients facing cancer. In 2017, Dr. Rosenstein was elected president of the American Psychosocial Oncology Society. He is also co-author of The Group: Seven Widowed Fathers Reimagine Life, which details the challenges and triumphs of seven men who raised young children after their wives died.
In this podcast on depression and suicidal thoughts after a cancer diagnosis, Dr. Rosenstein talks about what major depression can feel like, as well as risk factors for depression. Listen to the podcast to hear him discuss:
- what we know about depression as a side effect of tamoxifen
- signs that you may need to see a doctor for depression
- treatments for depression
- depression in the context of breast cancer and why people should not suffer with depression in silence
Running time: 25:44
Show Full Transcript
Jamie DePolo: Hello, everyone, I’m Jamie DePolo, senior editor at Breastcancer.org. Our podcast guest today is Dr. Donald Rosenstein, professor of psychiatry and director of the Lineberger Comprehensive Cancer Center Comprehensive Cancer Support Program at the University of North Carolina at Chapel Hill. Dr. Rosenstein’s research focuses on the areas where medicine and psychiatry meet. His research interests include assessing and managing suicide in the medical setting and psychosocial support for patients facing cancer. In 2017, Dr. Rosenstein was elected president of the American Psychosocial Oncology Society. He is also co-author of The Group: Seven Widowed Fathers Reimagine Life, which details the challenges and triumphs of seven men who raised young children after their wives died.
Today, Dr. Rosenstein joins us to talk about depression and suicidal thoughts, topics that may be very distressing but need to be discussed because many, many people report depression during and after breast cancer treatment. Dr. Rosenstein, welcome to the podcast.
Donald Rosenstein: Thank you so very much. I’m glad to be here.
Jamie DePolo: So as I said, this is … a difficult topic, but we’ve had people on our discussion boards be very open about their struggles with depression, and some even talk about their suicidal thoughts. Are there any statistics on how common both depression and suicidal thoughts are after a cancer diagnosis? Is anyone doing that research?
Donald Rosenstein: There’s actually quite a bit of research that’s been done in this area, and I’ll share some of the more important statistics in just a moment. But let me start by saying two general comments that I think are important to set the stage. The first one is that there are a lot of people who are worried about talking about suicide with patients out of a fear that that may plant an idea about suicide in their minds. That is an old myth, an old worry, that’s been shown several times not to be the case. You don’t kind of introduce an idea that someone hasn’t thought about. So I would encourage patients to talk with their care providers if they do have any suicidal thoughts, and we’ll get into more detail on that in just a minute.
And then the second point I want to make is to make a distinction between having depressive symptoms and having major depression, which is a more severe syndrome. It’s completely normal and expected that anyone who is struggling with cancer is going to have symptoms of depression. Whether or not you then suffer from a syndromal depression, a major depression, is a very different story. What I can tell you is that probably 20–30% of people who are diagnosed and treated for cancer will have symptoms of depression — either a single symptom, like feeling sad or tearful, or having trouble sleeping or being worried about the future, or so on. It actually does matter if you just have symptoms, but that’s different from having a whole syndrome.
If you really talk about formally diagnosed major depression, it’s probably more like 8, 10, 12% of patients with cancer, and it depends on what the cancer is. So it’s actually higher for some cancers like central nervous system cancers, brain cancers, or head and neck cancers or GI cancers (gastrointestinal) cancers, and it tends to be a little bit lower rates for people with better prognosis cancers. So it’s actually lower, more like 7–8%, for women with breast cancer, for example.
Jamie DePolo: And I would assume when you talk about prognosis, no matter what type of cancer, if it’s metastatic cancer, those people would probably be more likely to have major depression.
Donald Rosenstein: I think that’s a fair conclusion to draw with one important caveat, which is that this world is changing very rapidly. If we were having this conversation 5 years ago and we were talking about metastatic melanoma, I would not have the idea that very many people could contemplate the prospect of cure. These days, maybe 20, upwards of 30%, of people with metastatic malignant melanoma might be cured with some of the targeted treatment and immunotherapies. So some of the new treatments are changing the conversation about metastatic cancer in ways that we couldn’t have predicted just a few years ago.
Jamie DePolo: I want to go back to how you mentioned depressive symptoms and then major depression. Could you talk a little bit about how that is different to the person experiencing it? Would that person seem different to the people around them if they had one versus the other?
Donald Rosenstein: Sure. I think that the human condition brings with it ups and downs in everyone. People with or without cancer in all walks of life can identify with periods of time when you feel down, sad, blue, less motivated, less interested, less confident in yourself, and so on. So there is a normal fluctuation in mood from the low side to the upside in everyone.
What happens with major depression is that it kind of takes on a life of its own at some point so that it gets bigger than the sum of the symptoms in and of themselves. So what might that look like in someone? They may really not be themselves. So for someone with a major depression, they may have trouble getting out of bed. They may have trouble concentrating, doing their work. They may be tearful all the time. They may not be able to read a book, which they normally might be able to do. The patients of mine who describe what it’s like to have a major depression, they talk about the physicality of it. They talk about that it feels like a medical illness, and in many respects it is a medical illness. It affects all sorts of aspects of your physiology.
And so the overall experience can be profoundly debilitating. And, in fact, around the world, major depression accounts for — depending on which age group you’re talking about — the most disabling illnesses on the planet, even in some cases as much or more so than cancer itself or heart disease.
Jamie DePolo: PTSD, post-traumatic stress disorder, has been starting to be diagnosed more and more in people who’ve been diagnosed with cancer. Does that always lead to depression? I’ve read that it’s a risk, but how does that play into all of this as well?
Donald Rosenstein: So, post-traumatic stress disorder is really a different disorder but is co-occurring with depression very commonly. So many people who are diagnosed with PTSD will also have depressive symptoms, but PTSD in my mind and in many people’s minds is more of an anxiety disorder. It’s kind of a disorder of arousal and kind of increased anxiety. You can have intrusive memories of what the trauma was. You can have a increased startle reflex. You can have panic attacks. You can have avoidance of certain things that will remind you of what a trauma was.
The post-traumatic literature in cancer is a really interesting one, and it’s evolving. In contrast to PTSD from, let’s say the battlefield, or if someone was near an earthquake or a bombing or some more discrete trauma, there are perhaps for most patients with cancer a series of traumas that may not seem quite as dramatic from the outside. And so there are a lot of people who have cancer that experience a trauma related to the cancer itself — the diagnosis and the treatments — and they may have, if not full-blown PTSD, they may have post-traumatic stress symptoms, so that it’s more of a limited syndrome.
Now, it’s good to also note that there is a growing literature, a really interesting literature, on something called post-traumatic growth that, depending on how people respond to and adapt to various difficult life experiences that exist somewhere along the spectrum of trauma, there can be really important growth opportunities that happen. That people appreciate things in ways that they didn’t before. That they learn that they’ve got more strength and more resilience and more creativity. That they cut out some of the things in their life that they used to do that maybe don’t matter to them as much, and they focus more on the relationships and the things that are more meaningful.
And so I think it’s really important to remember that there can be some difficult symptoms, pathological symptoms, that can come from the trauma of cancer and its treatment. There can also be some intra- and interpersonal growth that comes from the very difficult experience of cancer.
Jamie DePolo: Some women on our discussion boards have talked about tamoxifen and some of the other hormonal therapies have really spiraled them into depression. It could be that they started taking it at the same time as it happened, but in your practice and your experience, is that a known side effect of some of these therapies?
Donald Rosenstein: So that’s a really interesting question, and at least to my mind it’s not fully decided. The way I think about it is I think that there’s a signal there. What I mean by that is I don’t think about tamoxifen as a drug that predictably causes depression in all or even most patients who take it. There have been several studies that have looked for an association between tamoxifen and depression, and there hasn’t been a definitive demonstration of that. Having said that, I do think that there are some individuals who are particularly vulnerable to some of the hormonal effects of tamoxifen and other medicines.
So I do think that it’s relevant for some patients, maybe a significant minority, but I wouldn’t think about this as a drug that you can predictably say, “This is going to cause you depression.” In the same way that there are often medical or surgical reasons for women to suddenly become menopausal — either you have surgical removal of your ovaries, or because of chemotherapy, that chemotherapy renders someone menopausal in terms of their hormone levels. That’s another similar and really interesting literature about whether depression is associated with the menopause or not, and I think the short answer is, it is in some women and it’s not in every woman.
And so I think that we can’t really say all or nothing on this one, but it has to be looked at on a case-by-case basis.
Jamie DePolo: Has anyone done research looking at some of these risk factors that might predispose a woman to depression from tamoxifen or another hormonal therapy so that at least she and her doctor could have that conversation before she started on the medicine?
Donald Rosenstein: Yeah, I think the short answer is yes. That is not a literature that I’m that familiar with, but what I can tell you is that some of the risk factors are first and foremost a prior depression. What we know about depression in general is that it tends to be recurrent, not in everyone, but if you’ve had one episode of major depression — whether you’ve got cancer or not — there’s probably about a 50/50 chance that you’ll have another episode of major depression at some time in your life. If you’ve had a second episode, the likelihood goes up even more that you might have a third, and so on. And so I think that the most important risk factor from my point of view is whether someone has a prior difficulty with some kind of a mood problem, either major depression or bipolar disorder.
I think other risk factors can include prior trauma, prior experiences with substance misuse or alcoholism, and I think that there are some other factors related to the degree of impairment in body image and body integrity that can happen with cancer. I think that there are lots of very difficult challenges that go along with mastectomy, reconstructive surgery, and some of the physical changes that can happen with radiation therapy and so on.
Jamie DePolo: You’ve talked about major depression, depressive symptoms, some of the other things. If somebody is feeling down, is there a way that she or he can decide that for themselves? I guess what I’m wondering is, how does somebody know when they need to see a doctor, or do they always need to see a doctor?
Donald Rosenstein: I think that very often people can tell themselves that they’re off their game, that they’re not feeling right. The most common symptoms are ones that are easy to find online and easy to find in any textbook description of depression. So they’re things like sadness, tearfulness, loss of interest, loss of motivation, poor self-esteem, feeling helpless or hopeless.
What a lot of patients tell me when they’re in a depression is that they really have very little hope that they will be able to feel any different. They feel stuck, and like they’re going to keep feeling like that going forward. They may have less interest in things that normally bring them pleasure or joy. There’s a term called “anhedonia” that we use, which is the inability to experience pleasure. So if someone were to tell me that under normal circumstances they would light up when their grandchildren come over for breakfast on a Sunday morning, yet the prospect of that seems overwhelming and doesn’t bring them any anticipatory pleasure or joy, that might be something that you would look at as a signal.
Certainly, people who are very depressed can have thoughts that life isn’t worth living, that maybe they or their family members would be better off if the patient were dead, that everybody else would be better off or they wouldn’t a burden to other people, or have very specific thoughts about doing something to harm themselves or actually end their life. So I would think that anyone who has significant thoughts or plans to take their life is a signal of serious depression until proven otherwise.
Jamie DePolo: Does serious depression always or almost always lead to these suicidal thoughts, or are there some people that just experience this sort of suffocating depression but don’t think about ending their life?
Donald Rosenstein: In fact, most people who are depressed don’t have specific plans or thoughts of committing suicide. So, it’s a common symptom, but it does not happen in everyone, it does not happen in most people.
The data that we have on this in the cancer world — I’m not even talking about whether there’s depression present or not — let’s just talk about cancer patients as a general group. There’s a group from England, first in Scotland and now in Oxford, England, and they have studied this very carefully. If you look at an outpatient cancer clinic, and you look at how common is depression and how common are suicidal thoughts, what you’ll see is that about 10% of outpatients with cancer will endorse having some thoughts that they might be better off dead or of hurting themselves in some way. In follow-up careful interviews, about a third of those people have more worrisome thoughts about suicide.
So even if someone has thoughts of death, my feeling is that if you have a serious cancer diagnosis — certainly if you have a metastatic cancer diagnosis — it would be expected to have thoughts of death. That doesn’t mean that you’re thinking about going out and taking your life. So I think it’s very common to have thoughts of death. It’s a different matter and more concerning if someone has specific thoughts about wanting to take their own life.
Jamie DePolo: How is major depression treated? I know there are medicines and I’m hoping you can talk about those, but also, if there are any more complementary therapies, maybe things that people can do at home alongside the medicines, or is medicine really the major treatment?
Donald Rosenstein: I clearly have a bias. I’m a psychiatrist by training, and I see a lot of patients with very severe depression. And so in the setting of major depression I do think that medications are the mainstay of treating that depression. And in some cases treatments other than antidepressants, including, in severe cases — if it’s a psychotic depression, if people have lost touch with reality, if they have delusions or paranoia — then I think that electroconvulsive therapy is actually the most effective treatment we have for extremely severe depression.
But as we’ve been talking about this, I think your listeners will recognize that depressive symptoms exist along a very broad spectrum. And so for mild or moderate depressions, I don’t think that necessarily antidepressants are necessary in all cases or the way to go. So initially I would focus on talk therapy, group therapy, changes in diet, exercise interventions, meditation, mindfulness treatments. There are some herbal treatments that in some studies for milder depression have been shown to be helpful, like St. John’s Wort. I would just caution patients to make sure that anytime you take over-the-counter herbal remedies you talk about it with your healthcare team to make sure there aren’t any drug-drug interactions that you need to worry about.
But I think that when you take a giant step back it shouldn’t be one or the other. The question in my mind is, what tools do we have available that might help someone feel better? And all other things being equal, being educated in my mind is better than being ignorant about your circumstances. Being active is better than being passive. Being engaged in your own care is better than being disengaged. Exercising more is better than sitting on the couch. Eating a better diet is better than just letting yourself go and eating a lot of junk food, and those kinds of things — I think it all can help. So I don’t think it’s just a matter of taking a pill.
And then the one other comment I’ll just make about medications is that across many different conditions in mental health, the data are very clear that medicines plus talk therapy are better than either of those interventions alone for serious depression.
Jamie DePolo: Finally, as sort of a three-step guide or a beginning guide for somebody if they have been diagnosed with cancer, in our case specifically breast cancer, and they think they have major depression or they are having some thoughts of harming themselves, is there a process or a series of steps that you would recommend that they go through to get some help?
Donald Rosenstein: So if there’s a single a single message that I’d like to leave you and your listeners with, it’s the following: that depression in the context of breast cancer is very common, it is very consequential, and it’s treatable. So for those reasons, I think it’s really critical that people not suffer in silence.
So when I say it’s consequential, what do I mean? I mean that there’s very compelling evidence that when people are depressed, they are less likely to take their medicines — their cancer medicines — the way they’re supposed to. They’re more likely to miss appointments. They’re more likely to make emergency room visits for pain and other symptoms. They’re more likely to stay in the hospital longer. They’re more likely to be readmitted to the hospital, and there’s some evidence that just having depressive symptoms and cancer means that survival isn’t as good as if you have that cancer without depression. So there are a lot of reasons to identify the depression and get it treated professionally.
What I would do first is, if you’re in the United States at one of the major cancer centers, there’s a very good chance that somewhere along the line in your treatment, someone — a nurse or one of the doctors — is going to ask you about your level of distress. It’s called psychosocial distress screening. You know… right now, how anxious or depressed or worried are you? Or how much overall distress do you have related to finances, or physical pain, or whatever? When people ask you those questions, I would answer them honestly. So that kind of screening can identify patients in a more systematic way.
If that doesn’t happen, or if you’re not particularly comfortable doing it that way, then I would absolutely talk with your nurse, or with your physician, or with a social worker in the cancer center, or with a family member. And a lot of times I hear from spouses, children, loved ones, “So-and-so is really off their game, and I’d really love if someone could talk to them about it.” And so I think the first step is just simply saying, “I’m not feeling right, and I would like some help with that.”
Because what breaks my heart is when there are clearly identifiable things that can make a huge difference. We haven’t talked about medical causes of depression either. But sometimes after people have had radiation to their chest or neck area, they can have hypothyroidism. If your thyroid hormone is low, you may present looking like you’re depressed. What you need is not an antidepressant, not psychotherapy, not a big diet change. What you need is thyroid hormone replacement, and your energy and mood might be better. So there can be a lot of reasons for why you might be feeling down and blue. Get it checked out like you would any other symptom.
Jamie DePolo: Thank you so much. I think this has been a great podcast on a very difficult topic.
Donald Rosenstein: I really appreciate your interest and time. Thank you.