Survivorship in Testicular Cancer - Mary Dunn
April 27, 2021
The Testicular Cancer Survivorship Clinic, lead by Adult Nurse Practitioner, Mary Dunn is designed to help patients transition from testicular cancer treatment to testicular cancer survivorship. The Testicular Cancer Survivorship Clinic was established in 2008, at the University of North Carolina. Patients who have completed definitive therapy for testicular cancer are transitioned into the clinic for follow-up care and management. Each patient receives a personalized Survivorship Care Plan that includes various supportive services, resources, and oncology follow-up based on NCCN guidelines. Mary Dunn is welcomed by Alicia Morgans, MD, MPH, to share how the clinic works and how they help men with the many issues they face after cancer treatment.
Biographies:
Mary Dunn, MSN, RN, OCN, NP-C, Adult Nurse Practitioner, Director, Testicular Cancer Survivorship Program, Co-Director, von Hippel-Lindau Comprehensive Clinical Care Center, University of North Carolina School of Medicine, Chapel Hill, NC
Alicia Morgans, MD, MPH Associate Professor of Medicine in the Division of Hematology/Oncology at the Northwestern University Feinberg School of Medicine in Chicago, Illinois.
Biographies:
Mary Dunn, MSN, RN, OCN, NP-C, Adult Nurse Practitioner, Director, Testicular Cancer Survivorship Program, Co-Director, von Hippel-Lindau Comprehensive Clinical Care Center, University of North Carolina School of Medicine, Chapel Hill, NC
Alicia Morgans, MD, MPH Associate Professor of Medicine in the Division of Hematology/Oncology at the Northwestern University Feinberg School of Medicine in Chicago, Illinois.
Related Content:
Survivorship Care Plans Addressing Long-term Mental Health Among Survivors of Testicular Cancer, Journal Club - Christopher Wallis & Zachary Klaassen
SA Journey Shared: Testicular Cancer Survivor and Founder of The Testicular Cancer Society - Mike Craycraft
Testicular Cancer Awareness Month: A Focus on Implications of Mental Health Among Testicular Cancer Survivors
Survivorship Care Plans Addressing Long-term Mental Health Among Survivors of Testicular Cancer, Journal Club - Christopher Wallis & Zachary Klaassen
SA Journey Shared: Testicular Cancer Survivor and Founder of The Testicular Cancer Society - Mike Craycraft
Testicular Cancer Awareness Month: A Focus on Implications of Mental Health Among Testicular Cancer Survivors
Read the Full Video Transcript
Alicia Morgans: Hi, my name is Alicia Morgans. I'm a GU Medical Oncologist, and Associate Professor of Medicine at Northwestern University. I'm so excited to have here with me today a new friend and colleague, Ms. Mary Dunn, who is a nurse practitioner at The University of North Carolina (UNC) where she leads the Testicular Cancer Survivorship Center among many other roles. Thank you so much for being here with me today, Mary.
Mary Dunn: Thank you very much for having me.
Alicia Morgans: Wonderful. This Testicular Cancer Survivorship Center that you've run for a number of years I think is such a shining light of how we can best provide survivorship care to these young men who are hopefully living the rest of their lives without having to deal with cancer itself on a daily basis, but they still have to live with the history that they went through and all of the needs that result. I'd love to hear a little bit about your clinic and your approach to how you help these young men.
Mary Dunn: Well, thank you. And I am so happy to have the opportunity to showcase this clinic because I do have a strong passion for being able to take care of these patients in this capacity. It is truly an honor to be able to do this work. I had the privilege of being able to kind of take over this clinic many years ago from my dear friend and colleague, Dr. Paul Godly, who started the clinic with Liz Sherwood, another nurse practitioner, and make it my own a little bit. The format for it is that we meet monthly, and as patients come to the clinic, we review their diagnostics among other many important things, with the understanding that if they can not make it to that particular dedicated day, I will see them any other day.
My approach is one of being as comprehensive as possible, meeting them where they are in their cancer experience because it is very different going through active treatment, whether it's surgery, chemotherapy, radiation, and coming out on the other side of that into this ambiguous world of post-treatment surveillance and what that looks like for another people. The care is very specifically tailored to each individual patient. So, the first visit I have with them is really just getting to know you kind of visit so that if I haven't been part of their treatment in the active treatment phase, they get to know me and we get to establish that rapport together, that first visit.
Alicia Morgans: That's great. And then as you move on and as many of us think about survivorship, I would love to hear how you actually tackle all of the many issues that these men have. I think many of us are aware of and familiar with the Commission on Cancer's, standard survivorship care plan, requests, and recommendations, and many of our cancer centers are really striving to meet what ends up being a checklist of things to ensure that patients are informed about. But survivorship care is way more than a checklist, so that of course can help us meet our baseline goals. What else do you help these young men with?
Mary Dunn: It's a great question. I'm a huge proponent of the survivorship care plan document itself. I think being able to give patients hard copy documentation of their active treatment cancer experience, and making sure that we share that information with their primary care provider is a very important step. And it's so much more than just a document. There are so many things in there that we need to be incorporating into the actual patient interaction, instead of just saying, "Here's your care plan, I'm going to send it to your primary doc," and that's it. These visits really go beyond providing them with that piece of paper, because we really dive into the details of that. I usually focus these visits on kind of three main buckets, I call them. So, the first is to review their diagnostics, whatever those may be, so imaging, labs, those types of things.
The second bucket is to go over any lingering or long-term effects from their cancer treatment, whether that's from post-surgery or post-chemotherapy. And then the third and oftentimes easily overlooked bucket is the psychosocial aspect of being a cancer survivor post-treatment. That one I think I find to be challenging for many aspects. Number one, because I don't claim to be a trained mental health provider, but I think it is important to recognize that people are so much more than just what we see in their chart and if we are not asking them the questions, we will never know what's going on behind the scenes. That's how I coordinate the visits, and frankly, why I'm always running behind because it is nearly impossible to do a comprehensive survivorship visit in the time that we are unfortunately allotted.
Alicia Morgans: I'm sure. With these young men, in particular, you mentioned before we started recording, that sometimes these men aren't necessarily as forthcoming without questioning. How do you help them feel comfortable to share questions that they might have about either psychological distress, depression, anxiety, or sexual distress that they are having, thoughts that they are worried about? Because testicular cancer really affects both of those things, and they're not necessarily always the things that the medical oncologist is focusing on when we are seeing those patients in the clinic.
Mary Dunn: Yeah. The first thing I try and establish with them is that anything they share with me in the context of our appointment is a safe place to do that. That even if I don't have an answer for them, I will do what I need to do to find out an answer. The question that I usually ask, I try and leave it very broad and open-ended is say, "Hey, how are you doing emotionally with all of this?" A simple question like that, you'd be surprised how quickly the flood gates open, and it ranges anywhere from I feel like I'm doing great, I have a wonderful support system, I only think about my cancer experience when it's time for my followup visits.
Or to the extreme of all I think about is that my cancer is going to come back, every ache and pain makes me think that my cancer is back, I'm losing sleep because of this, right? Then of course everything else in between. So, I think it is important as their provider to let them know that that the place with me is a safe place to tell me any of those things and that I will find the resources that they need.
Alicia Morgans: I think that's a great approach, and creating that safe space is what people really need to open up. And I'm glad that you see these gentlemen over time too so that they can continue to build trust in you as you do that. Now, how early are you seeing them? Are you seeing them within the first year of completing their treatment? Or how do you ensure that patients are actually making it effectively and systematically into your clinics so they are not lost and just continue on with oncology care alone?
Mary Dunn: That's a great question. So, it really depends on the patient and the provider. We kind of decided early on not to make a very rigid timeline in which these patients transitioned into my survivorship clinic. And there are several reasons behind that, but the main one being, it is really nice for the urologists and the radiation oncologists and the medical oncologists to also see patients who are doing well, because so much of what is in our active clinics, for lack of a better way of putting it, are people who were sick and people who have advanced disease. So, their primary oncology provider, it's nice to be able to have those visits where someone on your schedule is doing well and is years from treatment, and you get to have that relationship with them as well.
So, amongst our group, we haven't really come up with a rigid schedule because those relationships are meaningful to everyone on the team, and not every patient wants to be transitioned into my care, and that is absolutely their right and their choice to be an active partner in that decision-making process. But generally speaking, if someone is going to be transitioned into my survivorship clinic, it almost always happens within the first year. A lot of times my urology colleagues will transition them sometimes immediately after orchiectomy or a [inaudible]. My medical oncology colleagues usually like to wait until they have that kind of first post-treatment scan visit to provide that reassurance. Or if the scan is unfortunately not good or there is some indication that there is still active cancer, and make that treatment plan. That is the loose way that we do it.
Alicia Morgans: That's great. I think as clinicians, as patients are thinking about how to best access these services or create their own care model, what advice or recommendations would you have for them as they are trying to put together similar clinics within their practices?
Mary Dunn: One of my biggest pieces of advice would be to incorporate other disciplines. I can't do this work alone. It's very challenging, and I am so fortunate at UNC to have specialists and sub-specialists and anything I could possibly need for this specific patient population. Specifically, we are very fortunate to have a relatively young, but very thriving Adolescent and Young Adult (AYA) program at UNC. So I use their services a lot to connect patients with other patients, and also they have people who are part of the AYA team who are experts in helping with the mental health aspect of patients who are in this particular age group. We also have resources from our comprehensive cancer patient support program with social work, mental health, and nutrition. One of my biggest pieces of advice is to definitely take advantage of other resources that are around you if you are fortunate enough to be incorporated with those teams too.
Alicia Morgans: Fantastic. Well, I really, really appreciate you sharing your expertise, sharing how your clinic works, and for taking the time to talk all of that through with me today. Thank you so much for your time.
Mary Dunn: I really appreciate the opportunity. Thanks so much for having me.
Alicia Morgans: Hi, my name is Alicia Morgans. I'm a GU Medical Oncologist, and Associate Professor of Medicine at Northwestern University. I'm so excited to have here with me today a new friend and colleague, Ms. Mary Dunn, who is a nurse practitioner at The University of North Carolina (UNC) where she leads the Testicular Cancer Survivorship Center among many other roles. Thank you so much for being here with me today, Mary.
Mary Dunn: Thank you very much for having me.
Alicia Morgans: Wonderful. This Testicular Cancer Survivorship Center that you've run for a number of years I think is such a shining light of how we can best provide survivorship care to these young men who are hopefully living the rest of their lives without having to deal with cancer itself on a daily basis, but they still have to live with the history that they went through and all of the needs that result. I'd love to hear a little bit about your clinic and your approach to how you help these young men.
Mary Dunn: Well, thank you. And I am so happy to have the opportunity to showcase this clinic because I do have a strong passion for being able to take care of these patients in this capacity. It is truly an honor to be able to do this work. I had the privilege of being able to kind of take over this clinic many years ago from my dear friend and colleague, Dr. Paul Godly, who started the clinic with Liz Sherwood, another nurse practitioner, and make it my own a little bit. The format for it is that we meet monthly, and as patients come to the clinic, we review their diagnostics among other many important things, with the understanding that if they can not make it to that particular dedicated day, I will see them any other day.
My approach is one of being as comprehensive as possible, meeting them where they are in their cancer experience because it is very different going through active treatment, whether it's surgery, chemotherapy, radiation, and coming out on the other side of that into this ambiguous world of post-treatment surveillance and what that looks like for another people. The care is very specifically tailored to each individual patient. So, the first visit I have with them is really just getting to know you kind of visit so that if I haven't been part of their treatment in the active treatment phase, they get to know me and we get to establish that rapport together, that first visit.
Alicia Morgans: That's great. And then as you move on and as many of us think about survivorship, I would love to hear how you actually tackle all of the many issues that these men have. I think many of us are aware of and familiar with the Commission on Cancer's, standard survivorship care plan, requests, and recommendations, and many of our cancer centers are really striving to meet what ends up being a checklist of things to ensure that patients are informed about. But survivorship care is way more than a checklist, so that of course can help us meet our baseline goals. What else do you help these young men with?
Mary Dunn: It's a great question. I'm a huge proponent of the survivorship care plan document itself. I think being able to give patients hard copy documentation of their active treatment cancer experience, and making sure that we share that information with their primary care provider is a very important step. And it's so much more than just a document. There are so many things in there that we need to be incorporating into the actual patient interaction, instead of just saying, "Here's your care plan, I'm going to send it to your primary doc," and that's it. These visits really go beyond providing them with that piece of paper, because we really dive into the details of that. I usually focus these visits on kind of three main buckets, I call them. So, the first is to review their diagnostics, whatever those may be, so imaging, labs, those types of things.
The second bucket is to go over any lingering or long-term effects from their cancer treatment, whether that's from post-surgery or post-chemotherapy. And then the third and oftentimes easily overlooked bucket is the psychosocial aspect of being a cancer survivor post-treatment. That one I think I find to be challenging for many aspects. Number one, because I don't claim to be a trained mental health provider, but I think it is important to recognize that people are so much more than just what we see in their chart and if we are not asking them the questions, we will never know what's going on behind the scenes. That's how I coordinate the visits, and frankly, why I'm always running behind because it is nearly impossible to do a comprehensive survivorship visit in the time that we are unfortunately allotted.
Alicia Morgans: I'm sure. With these young men, in particular, you mentioned before we started recording, that sometimes these men aren't necessarily as forthcoming without questioning. How do you help them feel comfortable to share questions that they might have about either psychological distress, depression, anxiety, or sexual distress that they are having, thoughts that they are worried about? Because testicular cancer really affects both of those things, and they're not necessarily always the things that the medical oncologist is focusing on when we are seeing those patients in the clinic.
Mary Dunn: Yeah. The first thing I try and establish with them is that anything they share with me in the context of our appointment is a safe place to do that. That even if I don't have an answer for them, I will do what I need to do to find out an answer. The question that I usually ask, I try and leave it very broad and open-ended is say, "Hey, how are you doing emotionally with all of this?" A simple question like that, you'd be surprised how quickly the flood gates open, and it ranges anywhere from I feel like I'm doing great, I have a wonderful support system, I only think about my cancer experience when it's time for my followup visits.
Or to the extreme of all I think about is that my cancer is going to come back, every ache and pain makes me think that my cancer is back, I'm losing sleep because of this, right? Then of course everything else in between. So, I think it is important as their provider to let them know that that the place with me is a safe place to tell me any of those things and that I will find the resources that they need.
Alicia Morgans: I think that's a great approach, and creating that safe space is what people really need to open up. And I'm glad that you see these gentlemen over time too so that they can continue to build trust in you as you do that. Now, how early are you seeing them? Are you seeing them within the first year of completing their treatment? Or how do you ensure that patients are actually making it effectively and systematically into your clinics so they are not lost and just continue on with oncology care alone?
Mary Dunn: That's a great question. So, it really depends on the patient and the provider. We kind of decided early on not to make a very rigid timeline in which these patients transitioned into my survivorship clinic. And there are several reasons behind that, but the main one being, it is really nice for the urologists and the radiation oncologists and the medical oncologists to also see patients who are doing well, because so much of what is in our active clinics, for lack of a better way of putting it, are people who were sick and people who have advanced disease. So, their primary oncology provider, it's nice to be able to have those visits where someone on your schedule is doing well and is years from treatment, and you get to have that relationship with them as well.
So, amongst our group, we haven't really come up with a rigid schedule because those relationships are meaningful to everyone on the team, and not every patient wants to be transitioned into my care, and that is absolutely their right and their choice to be an active partner in that decision-making process. But generally speaking, if someone is going to be transitioned into my survivorship clinic, it almost always happens within the first year. A lot of times my urology colleagues will transition them sometimes immediately after orchiectomy or a [inaudible]. My medical oncology colleagues usually like to wait until they have that kind of first post-treatment scan visit to provide that reassurance. Or if the scan is unfortunately not good or there is some indication that there is still active cancer, and make that treatment plan. That is the loose way that we do it.
Alicia Morgans: That's great. I think as clinicians, as patients are thinking about how to best access these services or create their own care model, what advice or recommendations would you have for them as they are trying to put together similar clinics within their practices?
Mary Dunn: One of my biggest pieces of advice would be to incorporate other disciplines. I can't do this work alone. It's very challenging, and I am so fortunate at UNC to have specialists and sub-specialists and anything I could possibly need for this specific patient population. Specifically, we are very fortunate to have a relatively young, but very thriving Adolescent and Young Adult (AYA) program at UNC. So I use their services a lot to connect patients with other patients, and also they have people who are part of the AYA team who are experts in helping with the mental health aspect of patients who are in this particular age group. We also have resources from our comprehensive cancer patient support program with social work, mental health, and nutrition. One of my biggest pieces of advice is to definitely take advantage of other resources that are around you if you are fortunate enough to be incorporated with those teams too.
Alicia Morgans: Fantastic. Well, I really, really appreciate you sharing your expertise, sharing how your clinic works, and for taking the time to talk all of that through with me today. Thank you so much for your time.
Mary Dunn: I really appreciate the opportunity. Thanks so much for having me.