Navigating the Challenges of Gynecologic Cancer Survivorship, with Fay J. Hlubocky, PhD, MA, and Merry Jennifer Markham, MD, FACP, FASCO

ASCO: You’re listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the world’s leading professional organization for doctors who care for people with cancer. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guests’ statements on this podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so data described here may change as research progresses. Brielle Gregory Collins: Hi, everyone. I'm Brielle Gregory Collins, a member of the Cancer.Net content team, and I'll be your host for today's Cancer.Net podcast. Cancer.Net is the patient information website of ASCO, the American Society of Clinical Oncology. Today we're going to be talking about the psychosocial challenges unique to survivors of gynecologic cancers and how survivorship care plans can be helpful to survivors of these cancers. Our guests today are Dr. Fay Hlubocky and Dr. Merry Jennifer Markham. Dr. Hlubocky is a licensed clinical health psychologist with an expertise in psychosocial oncology and a health care ethicist at the University of Chicago in Chicago, Illinois. She is also the Cancer.Net Associate Editor for Psychosocial Oncology. Thanks for joining us today, Dr. Hlubocky. Dr. Hlubocky: It's an honor and a pleasure to be here with all of you today. Thank you so much. Brielle Gregory Collins: Dr. Markham is Chief of the Division of Hematology and Oncology and a clinical professor in the Department of Medicine at the University of Florida in Gainesville, Florida. She is also the Cancer.Net Associate Editor for Gynecologic Cancers. Thanks for joining us today, Dr. Markham. Dr. Markham: Thanks so much for having me. This is going to be fun. Brielle Gregory Collins: Absolutely. Before we begin, we should mention that Dr. Hlubocky and Dr. Markham do not have any relationships to disclose related to this podcast, but you can find their full disclosure statements on Cancer.Net. Now to start, Dr. Hlubocky, what can survivors of gynecologic cancers expect during the transition from treatment to survivorship? Dr. Hlubocky: It's such a very important question. So this stage of survivorship, and if we think about the cancer survivor as anyone with the time of diagnosis, but especially when your treatment ends and that kind of later stage of survivorship begins, both anecdotal reports by survivors as well as research tells us this is very much a time of ambiguity. So complicated feelings such as depression and anxiety can still arise. But there's also this change in one's life and daily activities. So from the constant monitoring and treatment that the survivor actually had to go through and be engaged in constant contact with the team, now it's a time of sometimes emptiness. Patients have told us about not really knowing what to do, missing that contact, that monitoring. And so that can certainly leave us with a lot of complicated emotional distress. But also paradoxically, there are these feelings of greater purpose and feeling and meaning leading to post-traumatic growth. Might not be immediate. As soon as, of course, the treatment ends, there can be some difficulties, even with relationships and social relationships, and we can talk about some of the psychosocial challenges, but that's what at least has been reported both anecdotally also from a research perspective. Dr. Markham: I think that that's exactly right. I think what I see in the clinical side of the patient care is exactly that. I think a lot of people who just finished their cancer treatment don't quite know what to do with themselves. They've just been sort of released back to their lives, hopefully returning back to somewhat of a normal or a new normal life. And it's definitely an anxiety-provoking period of time. And I tend to see in the clinic room a lot of fear of what's going to happen next and what should I be doing and what should I be looking for? And also on the flip side, I think you mentioned relationships. A lot of people who I see in the exam room are telling me when they're done with treatment, I'm still having these feelings. I'm still recovering from some of my treatment experience, but my family or these friends are expecting me to just get on with life. And I'm not quite sure I know how to do that yet. Brielle Gregory Collins: Thank you both for your perspective on this. And Dr. Markham, one of the tools someone might use during this transition is a Survivorship Care Plan. So can you please explain what a Survivorship Care Plan is? Dr. Markham: A Survivorship Care Plan is traditionally a document, some type of a physical document or an electronic document that describes the treatment that the person has been through, describes who the physicians were involved in their care, can be very in depth, can include things like the specifics of the pathology, diagnosis, and the stage. It can also include and should include some things to look out for and what the follow up will be moving forward in the future. I think of it as really a guide and a document to refer back to so that person who receives it knows exactly what they were treated with, they know the dates of their treatment, they know who their doctors were, they know what their diagnosis and stage was. And they have a plan moving forward that they can use for their own empowerment and engagement with the health system, but also their other doctors that can utilize this as well to help know best how to monitor that patient. Brielle Gregory Collins: Absolutely. And why do you think Survivorship Care Plans are especially important for survivors of gynecologic cancers? Dr. Markham: I think they're important really for lots of patients, lots of people who have various cancer diagnoses. Cancer treatment for gynecologic cancers tends to be multidisciplinary, meaning that they may see a gynecologist, they may see a gynecologic oncologist, which is a surgeon who specializes in gynecologic cancers. They may also see a radiation oncologist and a medical oncologist and a genetic counselor and a psycho-oncologist. So there's so many parts to that treatment course that it can be very overwhelming. And I think for any patient who goes through such a complicated experience, not just treatment, but the whole diagnosis piece through treatment, really can benefit from having just a quick and easy reference. A summary. We also found these to be very important in times of natural disasters, for example. So someone who has lived in a hurricane zone or even in the beginning of the pandemic, it's nice to have all of your information in one easy-to-access PDF or Word document or even electronically in your email. This is really helpful for transitions and care. Brielle Gregory Collins: Thank you so much. Yes, it definitely seems like it's a critical part of that survivorship aspect. And Dr. Hlubocky, I know you touched a little bit on the psychosocial challenges that survivors might face, but can you tell us a little bit more about some of these challenges that are unique to survivors of gynecologic cancers? Dr. Hlubocky: Yeah. So certainly one’s emotional well-being and physical well-being can be impacted. So we talked a little bit about depression and anxiety, and also sometimes folks have reported post-traumatic stress symptoms. But again, everyone's individual, everyone can vary when it comes to the mental health state. We know a recent study was conducted in Utah just last year that said, specifically, ovarian cancer patients are at a little bit more heightened risk of anxiety and depressive disorders in that longer kind of ovarian cancer survivorship phase. So that's really important for us to know. Certainly also uterine survivors as well. We have to be very conscious when it comes to mental health constraints, but there's also some physical well-being or quality of life, well-being constraints, sleep can be impacted, sleep and insomnia, pain and fatigue. We know that patients record a significant amount of fatigue as well. And that really does take time. And there are certain things, for example, exercise. But additional challenges will be with sexual health, sexual libido. We know that that changes. An altered state of self-image. Certainly, we know that cancer can impact one's self-image of who that woman is. And that as well as financial concerns might be another issue. Dr. Markham talked about the change with family relationships and friends. They may expect you to be that person that you were before the cancer. And we know and a lot of patients have told us that it's a new normal phase for me, right? A new normal. And if we think about the cancer as being a traumatic experience, we certainly know that patients are forever changed, and it isn't necessarily for the negative. Again, there can be a lot of post-traumatic growth, a lot of resilience. And that, again, isn't necessarily going to be immediate. But certainly talking to survivors in that longer phase, we know that a lot of post-traumatic growth, a lot of meaning, a lot of purposes, a lot of impact on spiritual well-being, but it doesn't mean that one is free from stress. Brielle Gregory Collins: And do you mind just discussing how survivors can cope with some of these challenges? Dr. Hlubocky: Absolutely. There are a number of evidence-based treatments. For example, especially psychosocial, and then mental health treatments such as cognitive behavioral therapy, mindfulness-based reduction, using techniques like journaling, using meditation, things like this. And your psychosocial support team, if you don't have it in your cancer center, we certainly have cancer community support programs within each city. These are free community support programs where they can actually help to provide psychosocial support, either in individual or group settings. So there's lots of different modalities that could be used. Adopting breathing techniques, for example, to help address anxiety. These are the folks that can really help you teach you how to adopt some of these practices in that. So certainly there's peer support. We know peer support is a wonderful tool. At my institution, we have a peer support program. And it's really just helped both that longer-term survivor give back to a certain extent. They felt like they've gained so much being a patient and learning from that experience that they very much wanted to mentor active patients. So certainly, we know peer support, social support is very important. Individual therapy, group therapy, and that. So don't hesitate to reach out to your psychosocial support team if it's in the cancer center. If not, talk to your oncologist or your oncology team and try to identify what are the resources within. We understand that sometimes patients don't want to come back to the hospital, and that's completely fine. We want you to get back to your life. But recognizing the fact that being a survivor is also part of this new life. So we're here to support. And empowerment is key and also recognizing that your lifestyle really focusing on exercise and nutrition and sleep is vitally important also in this new phase. But recognizing as well that we have to be cautious, that this will take time for you to adopt certain lifestyle strategies. So start with the little bits. Just even going for a daily walk if you're able to. Just daily walk around the house, so to speak. Those are the little things. And assigning yourself homework to do something just to get out of the house, so to speak. But recognizing that this will take time. Brielle Gregory Collins: Yes. Thank you, Dr. Hlubocky. And you mentioned this term, cognitive behavioral therapy, as one of the methods for coping. Can you just describe for listeners what cognitive behavioral therapy is? Dr. Hlubocky: Oh, sure. It's a specific type of psychotherapy where we actually target what we call automatic thoughts that can be associated, for example, with either depression or anxiety or some other mental health conditions. And we look at their core beliefs. Sometimes some thinking can be black or white. It'll never get better. Well, we know that's not necessarily the case. Maybe for that moment, it doesn't feel like it won't get better. So therapists such as myself that are trained in this modality can actually help you to identify these automatic and core beliefs and help you change them or modify them or what we call reframe them. So that's very therapeutic when it comes to healing. As well as we know, sometimes the cognitive piece can be really tough for folks. So behaviorally, it's just changing one's behavior, so to speak. So as I mentioned, exercise. Sometimes it's really easier to get people moving than it is to change one's thoughts. So prescribing exercise daily or prescriptions for social support, going out and meeting with people, these are the things that can help patients down the line, certainly in the survivorship space. And we know that folks need that. And cognitive behavioral therapy can be both done in an individual level as well as there are certain groups that can be done as well in a group setting. So everyone's different. What is your preference? You can't go wrong no matter what. It's all about empowering yourself. It's all about rewarding yourself for what you've gone through. And right now, your lifestyle is the most important thing. So you have to be a priority. Brielle Gregory Collins: Absolutely. Thank you so much for explaining that. And Dr. Markham, are there any other survivorship challenges or any other methods of coping you want to add? Dr. Markham: Well, it's a very complicated time and there is not one particular issue that faces each of these patients or women with gynecologic cancers. I think that the psychosocial piece is very important. And what is most important I think from my mind for the listeners is that there's a discussion about, what should I expect? And I think that question to the oncology team is really an important one. What should I expect moving forward? What should I be on the lookout for? And are there things that I can do that will help me on that path? Brielle Gregory Collins: Absolutely. And going back to Survivorship Care Plans and using them as a tool during this transition, where can survivors go to find Survivorship Care Plans specifically for gynecologic cancers? Dr. Markham: So amazingly, Cancer.Net has a fantastic resource available with Survivorship Care Plans. And they are very similar for various cancers. But there are some that are directly focused for women with gynecologic cancers through Cancer.Net. And it's very easy to search. You can type in “Survivorship Care Plan” into the search bar and the page will come up with these. A person can print this or can share it with their oncologist. And the cancer care team may actually be presenting this to the patient already. So there's a variety of resources really. But for someone who is interested in just taking a glance at what they may look like, there's a great template available on Cancer.Net. Brielle Gregory Collins: Thank you so much. And thank you both for your time and for sharing your expertise today. It was so great having you both. Dr. Markham: Thank you so much for inviting us. This was great. Dr. Hlubocky: Absolutely. Thank you. And thanks to all the Cancer.Net listeners. We're here to help. ASCO: If this podcast was useful, please take a minute to subscribe, rate, and review the show wherever you listen to podcasts. Cancer.Net is supported by Conquer Cancer, the ASCO Foundation, which funds lifesaving research for every type of cancer, helping patients everywhere. To help fund Cancer.Net and programs like it, donate at CONQUER.ORG/Donate. [music]