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Ann H. Partridge, MD, MPH: Hello, I'm Dr Ann Partridge and welcome to Medscape's InDiscussion series on Cancer Survivorship. Today, we'll discuss psychosocial and psychological adjustment in cancer survivorship, and I'm pleased to introduce my guest, Dr Donald Rosenstein. Dr Rosenstein is director of the Comprehensive Cancer Support Program at the University of North Carolina at Chapel Hill, with joint appointments in the Departments of Psychiatry and Medicine. He also serves as division head of general adult psychiatry. Welcome, Don, to InDiscussion.
Donald L. Rosenstein, MD: It's great to be here, Ann. Thanks so much for having me.
Partridge: I'm excited to speak with you. And one of the things I'd like to do first is pick your brain about what made you focus on psycho-oncology and survivorship? What brought you to the specialty or super-subspecialty?
Rosenstein: Well, I got really lucky when I was in medical school. There used to be a great program at the National Institutes of Health for medical students, and my very first day doing a clerkship at the NIH, I was able to meet with patients who were receiving high-dose interleukin-2 for metastatic melanoma and renal cell cancer and had behavioral problems. And I was just fascinated by the interface of medicine and psychiatry, and in particular in cancer patients, ever since that moment.
Partridge: That's great. And did you do research then with those patients?
Rosenstein: We did. I was the psychiatrist on a team that rounded with Steve Rosenberg's surgical oncology branch. And they were doing some of the very early work in immunotherapy and patients were getting high-dose interleukin-2, and many of those patients were becoming delirious. And so it was a fascinating exposure for me to see a central nervous system toxicity from a systemic therapy.
Partridge: So you were at the forefront of psycho-oncology and also have led the way to study and develop clinical care orientation towards caring for the psychological aspects of cancer survivors. And maybe we could talk a little bit around the range of reactions that people can have to a cancer diagnosis, treatment, and cancer survivorship, just to set the stage here.
Rosenstein: Sure. One of the things that impresses me time and time again is the variability of response. I'm just struck by the fact that there are many patients who seem to take this whole thing in perfect stride. They may have some struggles briefly at the beginning of a diagnosis or at different times along the way with toxicity from treatments. But they do brilliantly, and I think most people do quite well. Most people struggle, as you might imagine, during different times along the way. But they don't have major psychiatric problems with their cancer care. And that's a great thing. I think the resiliency of people with cancer is really quite remarkable. But a lot of people do struggle, and what's fascinating to me is to witness how variable that is. Some people fall apart on the front end as soon as they get a diagnosis. Some people hold it together beautifully and then in the middle of it, if their hair falls out or if they start having more toxicity, they have trouble. And then again, some people cruise through treatment. And then right when you think they should be breathing a sigh of relief, at the transition from active treatment to survivorship, they kind of fall apart. And I just think that's fascinating.
Partridge: I want to pick up on that a little bit. In my breast cancer practice, I call that the period of when the casseroles go away. And people are adjusting to that new normal. Tell me about what's going on there for patients in general. When they're done with treatment and yet they sometimes fall apart.
Rosenstein: I think there are probably a lot of ways to understand that. The two that come to mind most are, number one, I think modern cancer care is very highly choreographed, right? If you're a woman with breast cancer, as you know better than most, there is going to be a really difficult year with some combination of chemotherapy, surgery, radiation, perhaps with some hormonal therapy afterwards. And it's very well choreographed. It's structured. Patients know what they're doing. They've got their appointments and they know what to do. Then patients go from that moment to a much less structured time of their life. When treatment ends and the nurses that they see in the clinic and their medical oncologist or whoever their other clinicians are, they don't see them as much and it can feel like they're less supported during that transition. The other piece of it is that I think for a lot of patients, they have this notion that they're supposed to be radically transformed by the cancer experience. And some patients are and some patients are not. And so patients get to the end and I think there's kind of this existential moment like, Okay, now what? How am I supposed to live my life now, having been through this? Have I learned the things I'm supposed to learn, have I changed the things I'm supposed to change? Patients often feel like the same person. And so that can be a little unsettling to not know what you're supposed to have experienced through all this.
Partridge: Another thing that I've seen in my practice and heard about from patients is that sometimes patients think they should be feeling better, and feeling better quickly, and when they've gotten through the early acute therapies, but then they're not (feeling better) either physically, or emotionally, or both. And then I think the other thing that compounds this, and I know you've done a lot of work around this, is that their family, their partners, their loved ones, their sisters, mothers — people think they are going to be back to normal and then they're surprised when they're not. Can you speak to that a little bit?
Rosenstein: I think that when someone has cancer, it clearly affects the whole family, their partners, their friends, their kids. And it's complicated because there are lots of assumptions that people make about how to support someone through cancer. I do wish I had a nickel for every time I've heard from a patient with cancer say about their partner, "I wish they would just back off a little bit and let me just be." The late, great Jimmie Holland talked about the tyranny of positive thinking, and sometimes that can be really weighing for people. Can I just have a minute to be exhausted because I feel exhausted? Can I have a minute to feel sorry for myself that I'm not able to run anymore? I'm not able to write my books or do whatever my work is in the same way. And so I think that we have to be respectful of the patient's experience and not necessarily expect them to be anything that someone else thinks they ought to be.
Partridge: I think we as clinicians learn how you can't be happy-go-lucky all the time in the cancer trenches, right? Or in any medical setting — that just wouldn't be right. And you know that early on and then you get seasoned about that over time and you learn how to manage yourself in that context because you don't want to be down all the time, especially if you're dealing with certain situations. That being said, I think we could do better generally in terms of supporting patients and their families to accept each other where they are in terms of their emotional journey or moment in the cancer care trajectory. I don't know if you have thoughts on how we can help people in that and talk about the patients and their loved ones and open those conversations.
Rosenstein: I think it actually does present a challenge for patients, for their medical professionals, and for their families to know what's normal and what's not. And so I would encourage all of us to adopt a broader range of what is a normal reaction, what should be expected. But a lot of people want to know, "Well, how do I know when it's not normal?" How do I know when the depression or anxiety or irritability has kind of moved into a different level? And what we do in psychiatry is really focus on two aspects. One is how much distress is the patient in, and the second is how much functional interference are patients having if patients can't sleep, if they can't go to work, if they can't get through a conversation with someone they care about without bursting into tears, if they are completely preoccupied with what they're going through — those are usually the signs that you need to do something, intervene in some way to help patients.
Partridge: So it's really about their functional abilities and their expressed distress. I appreciate that because the other thing that often comes up for me as a clinician, and I'm sure for many clinicians, is where is the bar that I can handle this? I'm just an oncologist — when do I need to send someone to a psychiatrist, or at least at a minimum, bring in our social worker or a psychologist to do some speaking with a patient and helping them to talk about this? We try to offer social work — a psychologist or some other mental health provider — to all patients. But can you help us out here? What are the red flags? When do we really need to get a patient in to see a psychiatrist? What are the levels, especially when you get into the extremes like suicidality, which we do see a little bit more in some cancer patients and cancer survivor populations, even when they're cured?
Rosenstein: That's a great question. And I think the short answer is clinicians need to know what their own comfort levels are with medications, with symptomatology, and with questions about safety. I have to say that I've been really impressed with my oncology colleagues over the years at how sophisticated they've become with respect to first- and second-line treatment with antidepressants for anxiety and depression, and for identifying issues related to panic disorder and even some problems with psychosis that can happen with high-dose steroids and so on. As a general rule, what I would suggest for most oncologists is that when a patient has a severe persistent treatment-refractory depression, despite psychotherapy and medication management, whatever your own comfort level is with first- and second-line medication treatments, that would be a good time to (refer to a mental health professional). My own feeling is that you need to send your patients to a mental health professional when you've got a serious concern about suicide and suicidality. That's not to say that you should immediately punt. I think that a core competency for any physician is to be able to be comfortable talking with patients about thoughts of suicide. But in terms of further evaluation and treatment management over time, I think that's when you need to send a patient to a mental health professional.
Partridge: And you can care for the patient in tandem because often you're still following them. But really get a mental health professional in who this is their mainstay, this is their main job, and they're going to focus on tweaking that and plugging the patient in with all kinds of resources as needed and do a real assessment beyond what an oncologist would typically do in their day-to-day practice.
Rosenstein: Yes, exactly. A couple other things just to think about with regard to referrals. I would say that for patients with bipolar disorder and clear mania, those are complicated patients in the setting of active treatment and in survivorship. I would say the same for patients with psychotic disorders, either schizophrenia or some other profound, complex trauma-related symptoms and so on. I think that again, the bottom line is if you feel like you're out of your depth, ask for help, as any clinician would.
Partridge: And are there particular groups of patients or warning signs or predictors of patients being more likely to be on that extreme end? Obviously recognizing that things like psychoses … you just alluded to steroids and perhaps that tipping someone into a mania or a psychotic break. But are there other red flags or groups of patients that we should have a lower bar for thinking about this?
Rosenstein: If you're asking about warning signs for suicidality, yes, I think that there are several things that people can key in on. I mean, we know with certainty that patients with cancer are at higher risk for suicidal thinking, suicidal behavior and death from suicide than are patients with other kinds of illnesses or the general population. We also know that it differs by the disease type, so that [patients with] head and neck cancer and brain tumors and lung cancers and GI cancers have a higher rate (of suicidality). And we also know that the time matters. The increased risk (of suicidality) is clearly higher in the first few weeks and months after diagnosis. So I think that's a time that clinicians should (be paying attention). Now gratefully, clinicians are more systematically screening for depression and suicide in different cancer centers. And so there are a lot of cues the clinicians can pick up on from that point of view. But I would say that any time a patient talks about not being able to imagine living with blank, you see a lot of what's called "future conditional suicidality" — If my cancer comes back, I'm not going to do this to my family. If I lose my apartment because of the financial stress related to this, I'm not going to want to live anymore. If I can't take care of myself, that's when I'm going to be done. Those are the kinds of statements that clinicians should be listening for.
Partridge: Thank you. That's very helpful because clinicians are all worried, when we care for patients, about what our threshold should be and how are we going to be able to tease that out and we fall back on our medical training. And some of us are pretty far out from our training. And so getting refreshed like this and thinking about it with you is very helpful. I want to pick up on the issue around losses and how people manage the losses. You just alluded to, If … then I couldn't live like this or I couldn't put my family through it. But what about people who are in the throes of grieving a loss or a potential loss? And we see this a lot in survivors who are through with treatment and without disease, but may have been changed forever by the diagnosis or the treatment, as well as with people living with advanced disease, which is a different group of survivors who are also, I think, sometimes struggling with their new barriers and limitations to their lives. Do you want to comment on that and your take on how we can best support those patients?
Rosenstein: I think it's a wonderful question and represents a sensitivity to the psychological experience of someone who's clearly taken care of a lot of patients with cancer over the years. We tend to think about grief pretty narrowly in response to death. But the fact of the matter is that we can mourn all sorts of losses. You can mourn the loss of your prior good health. You can mourn the loss of a job that you were loving, that you had to take a leave of absence from because you've got to get cancer treatment. You can mourn a body that has been changed by cancer, whether it's from a mastectomy or a colostomy or any one of a number of changes that patients go through in the important work of trying to either cure people of their disease or have them live with their disease as long as possible. And I like to think of this as a loss of an imagined future. We all have this idea about what our life is going to look like. And then life has its own way of getting in the way and making adjustments to that. And so I think for the vast majority of patients with cancer, getting the diagnosis and getting treatment interrupts that trajectory and creates a bit of a challenge about how you then think about moving forward with the new realities that you're facing, having had cancer or perhaps still having cancer.
Partridge: We actually think about this a lot in our survivorship program, and particularly around issues like limb-sparing or tongue-sparing surgeries or treatments. And when you can't do that, patients are going to be alive, most likely, but be without something important. And it's come up even more so more recently in our work focusing on fertility after cancer or the threat to fertility, where a patient is likely to be alive and well, we're banking eggs or embryos, and thinking about doing those things. And yet patients and their partners and the whole crew caring for a patient may be grieving the lack of normalcy around that. I think it's important to reflect on this and give patients some space for that legitimate emotion, don't you?
Rosenstein: Absolutely. And I don't want the oncologists listening to this to think that they're meant to be psychotherapists in addition to oncologists but being aware of that (fertility) struggle, I think, can help clinicians understand where their patients are at and why they may be making some of the decisions that they're making when you present various options to them going forward.
Partridge: I want to go back to that fertility example. Clinically, I focus on young women with breast cancer who may not have completed their families, and one of the things that patients have, over the years, come to me and told me is that some well-intended physician who's focused on trying to save their life from their breast cancer — they have early-stage disease and they're likely to do well — the physician will look at them and say something like, "Well, you already have two kids." And I laugh and say, "Well, you know, if you were the third child, you'd resent that." But that being said, I think that's totally discounting that loss of the imagined future, as you just said, if you plan on having three your whole life and all of a sudden you're only going to be allowed to have two. And cancer took that decision away. That's a real loss for somebody.
Rosenstein: It sure is. And it also represents a loss of what you imagined your family constellation might be still; in other words, with the exception of some very good prognosis cancers, I think a lot of patients appropriately wonder after a diagnosis and treatment for cancer, What does this mean for me? Does this mean my life isn't going to be as long and will I live long enough to see my kids grow up, to see my family go in the direction that I was hoping it would go in? Will I be a grandparent? And so on. I think that these things don't always come up in the clinical encounter, but it would be nice if they did more often, just to get a sense of how important some of these nonmedical concerns are to the patients and how they inform decisions that they make.
Partridge: Don, what do we as clinicians do in that context? Just listen or support? Are there any pearls?
Rosenstein: Yes. I have to give a shout out to my dear friend and colleague Hyman Muss, who many of your listeners will probably know of. He's a medical oncologist and a geriatric oncologist. And he's an old-fashioned doc in the sense that he knows amazing details about his patients' lives. He knows how many kids they have, and he knows what their names are, and he knows what kind of work people did. It may seem like that's an added load, but I would argue that it takes very little time and makes a world of difference for the doctor–patient relationship and patients feeling like they are cared for and they're understood. I think it's a hard business that we're in. And sometimes getting to know your patients really well can make it tough when it doesn't go well. But I think on balance, it's well worth the investment.
Partridge: I think Hyman's terrific. And I think that he's right and you're right. And the only thing I would add in my experience is I would say that it's also important for us (as clinicians) to suspend some of our own judgments and our own feelings about the relative import of certain things in the cancer diagnosis and survivorship scheme for patients, because what they're bringing to the table is what's important.
Partridge: And we need to be respectful of that and supportive of that, even though it might not be what we think is the priority, but where they're the navigators and they're the decision makers, right?
Rosenstein: I couldn't agree more. And I think in that respect, the movement over the last decade or longer now for patient-reported outcomes is really welcome in oncology. In psychiatry, all we've ever had is patient-reported outcomes, so it's not new to my specialty. But I think that patient-reported outcomes, coupled with perhaps a different kind of patient-centric agenda-setting in appointments, is really a wonderful thing for patient care. When you can sit down at the beginning of an appointment and make sure you understand what's most important to you about our visit today in the clinic.
Partridge: That's great, Don. I'd like to focus just for a little bit on that other group of survivors that you and I have discussed before — learning from the survivors of patients with cancer, those left behind, the bereaved — because it's a different group of survivors and you've done a lot of work in this area. Do you want to comment on how in general you think about that group and how we can help better manage previvors and survivors of patients who we've lost along the way?
Rosenstein: Thanks for asking about that, because it's been an area that has been very meaningful and very humbling to me over the past 10 or 15 years. And that is working with widowed parents, individuals who have lost a co-parent to cancer and are now grieving as they're helping their kids grieve. There're so many things to say about this. But the thing I want to emphasize to your listeners today is that I think there is a world of wisdom and lived experience that we don't routinely tap into. These men and women have had a front row seat to how their loved ones lived with and sadly died from cancer. And who better to ask what did we get right? What did we get wrong? And what could we do different going forward in caring for parents who have advanced cancer? It's just been a privilege for our team to work with so many bereaved and see if we can feed back to our system so that we can improve care for individuals when they're living with advanced disease.
Partridge: Well, Don, thank you. Today, we've talked with Dr Donald Rosenstein about cancer survivorship writ large and the psychosocial and psychological adjustment to the disease and treatment and living with and beyond cancer. We've addressed how there's a range of reactions to cancer diagnosis, treatment, and survivorship — that extreme feelings like suicidality can happen. And we as clinicians need to be paying attention to the red flags and referring patients who have either serious diagnoses and or are having suicidal ideations. But we can also manage some of the anxiety and depression in the oncology trenches. And then finally, I think we've really touched on the grief around people living beyond cancer and how they might experience that and how we might need to give them the space to make their decisions and react and respond to that and be supported and (extending that) to the people who've lived beyond patients who've died of cancer. So there's a lot there, Don, and I really, really appreciate your tuning in today with us. And thank you to the audience for tuning in. If you haven't done so already, please take a moment to download the Medscape app to listen and subscribe to this podcast series on cancer survivorship. This is Dr Ann Partridge for InDiscussion.
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Cite this: Living With and Beyond Cancer: Psychosocial and Psychological Support for Patients From Diagnosis Through Survivorship - Medscape - Jun 27, 2023.