Lewis Foxhall, M.D.
Professor and Vice President, Health Policy
Lynn A Waldmann, Senior Social Work Counselor
Michelle Fingeret, Ph.D., Assistant Professor, Behavioral Science
Andrea Bradford, Ph.D., Instructor, Gynecologic Oncology and Reproductive Medicin
Dr. Baile: Good afternoon everybody. Why don't we get started so we have some sufficient time for questions and answers. We always seem to run out of time at the end. Hi I'm Walter Baile and I am the Coordinator for the GME competency series. And today we have a very interesting setup in terms of a presentation for you. We have a panel discussion on cancer survivorship and as many of you have experienced over the years that we had more and more patients surviving their illness and living for longer periods of time. And today it's notable because there are almost 12 million cancer survivors and so their care as cancer survivors is certainly very different from patients who require acute care. And I don't know whether you've seen the October 20th issue of the Journal of Clinical Oncology, it has a whole series of articles on cancer survivorship. So, we're pleased today to have a guest panel, which is going to talk about several different topics on cancer survivorship and Dr. Lewis Foxhall is going to moderate the panel. And Dr. Foxhall is Vice President for Health Policy and Professor in the Clinical Cancer Prevention Division and Chair of the-- Head of the Cancer Survivorship Education Committee and the Policy and Outreach Committee because you know how important it is when we transition patients away from MD Anderson to their primary care docs. That whole transition period is crucial. In fact, you may be-- not be aware that the Institute of Medicine published a document several years ago and it was called, "Lost in Transition" and it was about cancer survivorship and some of the needs of patients and some of the challenges in transitioning patients from acute care to a more continuity care. So, having said this I'll turn over the podium to Dr. Foxhall who will lead the discussion.
Dr. Foxhall: Thank you Dr. Baile.
Dr. Baile: Thanks.
Dr. Foxhall: Well, thank you all very much for attending today and we want to go over just a brief introduction for you about the basics of survivorship. I think you may have had one lecture previously about this and then we're going to have our esteemed panel members talk about some different areas of care. And if I could get Dr. Baile to give me back my little introduction pages that he totally cleaned off the thing, unless you would like to do it. That would be fine.
Dr. Baile: That's a test to see whether you remembered .
Dr. Foxhall: I remember I had it, thank you. So, let me just introduce our panel members before we get started and then we'll-- well the plan is to give you some brief segments here. We'll speak to you about the different areas we want to talk about today and then we'll have some time for Q&A at the end. If you-- will that work for you or would you rather just ask questions along? I want to be sure you're comfortable with getting enough input here. So, I know the rooms a little spread out today, so wave and jump around and you know make noise if you want to ask a question. So, if you have the burning question interrupt us, we-- let's talk about it. If otherwise we'll save a little time at the end if you have time to stick around, but that will be within our hour so that should be sufficient.
So, first Lynn Waldmann is Senior Social Work Counselor in the Department of Social Work. She began her affiliation with MD Anderson in 2000, a millennial hiree and she's worked in the GI Cancer Clinic. She's offered clinical counseling to individuals and families to promote positive adjustment to cancer diagnosis and treatment and facilitated adherence to treatment, self determination and exploring choices. She currently works at the MD Anderson Breast, Thyroid and Colorectal Survivorship Clinics offering counseling to our cancer survivors. Then Dr. Michelle Fingeret is an Assistant Professor in the Department of Behavioral Science with joint appointments in Departments of Plastic Surgery and Head and Neck Surgery. And she is a licensed psychologist and has developed an innovative line of research centering on body image issues for oncology patients. In addition to her research activity she also directs the Body Image Research Therapy Program in Head and Neck Cancer Center and Center for Reconstructive Surgery. So, this is a counseling program that's designed to assist patients with head, neck and breast cancer and adjusting to body image and appearance related changes that are a result of their cancer and its treatment. And then our third panelist will be Dr. Andrea Bradford and she is a licensed psychologist who joined the faculty in the Department of Gynecologic Oncology and Reproductive Medicine in 2010. And she has a PhD in Clinical Psychology from UT Austin and completed her clinical fellowship in research at Baylor College of Medicine. So, right now she provides sexual counseling services for female cancer survivors and is conducting research on adjustment to cancer treatment and survivorship care for women with a history of gynecologic cancers. So, a great group of folks and we're going to have them talk a bit about their own specific areas and we'll start with just a brief introduction about the survivorship area.
So, as we think about topics to present for this series we want to try to pick out things that are-- that have some relevance to your work, to what you do every day. So, as we thought about the survivorship area we thought well you know certainly this is a very important area and a lot of it is because of what you do every day. You do a great job of treating people and a lot of them survive and a lot of them are living after their treatments today and many more today than there were in previous years. So, congratulations that's great, but it creates more work for us. Our job's not done when the patients' initial treatment ends. We have an ongoing commitment to those patients. So, we want to maximize the benefit they get from that treatment and help them live as long as possible with as good a life quality as possible. So, there are a number of things that impact our patients' outcomes and things that they worry about and things we should be worrying about even after that treatment's completed related to obviously recurrence, but also late occurring and long-term affects related to their treatments. The occurrence of second primary cancer is the 5th most common cancer type in this country today, if you count that as one type and of course prevention and wellness. It's good for all of us, good for everyone, but especially for our cancer patients. And then last but not least doing what we can do to improve psychosocial functioning.
So, if we think about the core competencies, clearly survivorship bounces off a lot of these areas from obviously the growing body of knowledge related to survivorship management by this series of reports and the JCO I think highlights that in a sense and I would encourage you to take a look at that work. Clearly it relates to patient care as we talked about this ongoing commitment to our patients, how we talk to our patients, communicate with them is so critical especially in this time of patient centered care that we need to think about now. And then our professionalism as Dr. Baile pointed out, our ongoing interactions and this team approach to care that really is going to be required of us in the new scheme of medical care going forward. Clearly it involves system based practice and there are lots of opportunities for practice based learning and improvement. So, hopefully we will be able to think about that as we go forward.
So, the curve just keeps going up. There are more and more patients surviving their treatment and the percentages of survival are increasing. So, back just in the 70's the survival rate overall was around fifty percent, now it's over two thirds of patients live five years or longer after their diagnosis. So, the numbers keep building up, so the prevalence of cancer survivors in the U.S. is almost 14 million people and is expected to continue to increase. So, the breakdown of survivors, you're probably familiar with this, but clearly there are large numbers of women with-- who have had breast cancer treatment, prostate cancer, colorectal, gynecologic and the others as you can see. So, whatever area you're working in this is going to be an opportunity for us.
So, how we doing? Are we doing a good job taking care of these patients? Well, let's ask the patients. This was a survey done by the Livestrong Foundation and this was done a few years ago, but shows that only about a half of patients in this survey felt like their needs were being met. And a lot of the reason that they were feeling that their needs were not met was that their oncologist were willing to talk to them, about a third of them were willing to talk to them, but they didn't really offer them much information. And none of the rest of their treating physicians even wanted to talk to them about it, so that's a problem. So, the survey was repeated again just recently.
This is from 2010 and things are a little better. You can see it's not 50 percent in all areas at least in the practical sense dealing with insurance and financial issues and those sorts of things. It's around 34 percent that feel like they have unmet needs. About 30 percent or so had some physical issues and but still about 45 percent had unmet emotional needs. So, a little bit more of a breakdown shows that in the practical area a lot of it surrounding employment, how do I get back to work? Are there physical limitations that I have to deal with, acceptance back into the workplace? What about this debt? You know I had a little insurance, but my expenses are very high; I'm having to work through that and issues with insurance either keeping it or being able to manage the cost of it is a problem for many. Cognitive issues, pain, sexual functioning, all of the issues that we encounter with our-- with our patients still continue to create problems for many. And on the emotional side over half still have a significant fear of recurrence, problems with depression, emotive issues, grief and identity problems are still very, very common. So, as we think about the basic elements of survivorship care and we think about the patient care approaches one thing we want to always keep in mind is the need for and the use of this tool of survivorship care plan, which should include a psychosocial care plan and a treatment summary.
How many people have seen those, the MD Anderson Passport? Has anybody seen an MD Anderson-- well that's very discouraging. So, for each patient who's going through-- has anybody been in the Survivorship Clinic yet? A handful okay; so, when you go to the Survivorship Clinics hopefully you'll see-- we have about 85 percent of our patients have these completed. So, this is a two page summary. It's just a very brief summary. It's intended to communicate to the patient, but also to any other clinicians in the community about what's going on with the patient, what happened to them. It's not just the traditional MD Anderson blackhole, but this is a little message out to the community and to the patient about what happened because a lot of patients you know you've probably seen them in follow-up and then maybe in for another cancer or you know, well I had cancer before. Well, how you treated? Well, I had some chemotherapy. Well, what was it? Well, I had some surgery. Well, what exactly happened? You know it's kind of difficult if you don't have the facts. So, this is intended to be just a quick summary, but also a plan for treatment. What sort of follow up does this person need? What sort of additional care? What things should the community physician and the patient be concerned about? So, try to find one on a patient. Go ahead and look for one and just take a quick look at it. So, this will give recommendations for screening, the health promotion, symptom management and importantly this coordination, you know who's going to do what? Are the patients going to keep coming back here, do they need their tests here or they get them done in the community? If so, what happened? So, all that should be rolled up into that little tool.
So, I don't need to tell you this, but obviously one size doesn't fit all with survivorship. Each person has their own particular risk, their own particular issues depending on their type of cancer and the sorts of treatments that they have had. But, critically number four, communication with our patients and with their clinicians is critical. So, here's the tool. This is the passport, summary of care. There are many versions of this out there. Other places have their own types, so people can just do their own. But, it's a simple summary and these are going to be coded so we can use this to mine data later on. So, just in wrapping up this initial part we do place this on the internet. This is on the myMD Anderson. How many are familiar with myMD Anderson? Has anybody looked at that? Okay, so this on there. So, this-- once it's completed this is on there. You can look at it for your patients or you can-- hopefully we'll have community physicians and the patients looking at it too.
So, I want to have you think about your role in survivorship. Now, you hopefully will have some opportunity to interact with some of our Survivorship Clinics here, but if not certainly when you continue your practice, you'll be managing cancer survivors. You'll be interacting with cancer survivors. So, this is-- this is our goal. I think this is a goal we want to encourage you to adopt is to try to address the outcomes of our patients cancer and its therapy, improve our survivors health and quality of life through integrative programs through working with our health professionals to address the problems that are not addressed so far. So, we do have another tool, which are our practice algorithms. How many people have looked at our practice algorithms for cancer survivorship? Another small handful; so, these are on the website. They're readily available. Please take a look at them. It's a simple thing just you know type in the little search thing survivorship algorithms and they will pop up. And this includes you know who's eligible, what should be done and importantly the idea that this can form a basis for additional research. So, this is what they look like. It's broken down into these main categories of surveillance, early detection and screening, late effects, psychosocial functioning. This is starting to sound kind of familiar I hope. And then we'll have specific details for any individuals that need additional work. Well, my slide is stuck. Well, okay. There we are. Alright, so this is a more direct breakdown. So, these are all in the, in the multiple areas. We have about 38 guidelines I believe now that have been reviewed and approved and are available out there. Here's some other places you can look for further information and also look on our website, look on the MD Anderson website and you'll get a lot of good background information and this will be available on our video for you.
And that I hope will give you a little sense for kind of where we are. So, we talk-- we talked a little bit before a lot of you came in about trying to do our questions later. Are there any major questions anybody has right now? So, feel free to interrupt, yell, shout, don't throw things. Eat your food. Do not throw it. So, alright we're good. Alright, so let's move on. Yes, oh I'm sorry. Yes?
Dr. Azare: So, my name is Dr. Azare [Assumed spelling] and I am a fellow in the palliative care department and of course these lectures are mandatory for us, of course [Inaudible]. So, my question is from our point of view we don't see much survivors, we see the families of them. So the effectiveness of that right now for data distribution or maybe focus on or maybe touch on that and.
Dr. Foxhall: Sure, so that you're not being asked to-- the question was or I guess it was a statement that you're in palliative care program, but you're not seeing many survivors. So, do you-- is-- do you feel like there's-- you have things to offer that not being used, is that the-- what you're getting at?
Dr. Azare: Familes of the patients actually, yea.
Dr. Foxhall: Well, I think you know clearly we can see that that's an area of need. And I think you know at least in-- certainly in pain control as well as other opportunities and we want you know our patients to all continue to thrive and do well, but we know they're not. So, there are some that are going to relapse or going to have a recurrence or going to develop a second cancer and they may-- certainly may benefit. A lot of the psychosocial and emotional needs that should be discussed and talked about I'm sure these are areas that are very important for our palliative care teams. So, I think the opportunity here is for all of us to think about that as a service that we can consult and that we can think about not just in acute care situations, but patients who are in survivorship situations in particular. Dr. Baile?
Dr. Baile: So, I was wondering [Audio cuts out] many of our fellows are going to be going into private practice and such, say academics. Do we know what the profile is of patients who receive in private practice who maintain that connection with their oncologist even after they're completely-- so called even if they're cured? Do we know how many patients go back to internists or stay with oncologists and specialists? The survivorship information then becomes so much more relevant if you're going into private practice and you're going to have a panel of cancer survivors that represent a significant part of your practice. Is there any data on that at all?
Dr. Foxhall: Well there is some and it's mixed and some of it depends on the individual patient's situation, much as the patients who come in here. But, there are-- the majority it appears have a shared care situation. So, a lot of them will continue to see an oncologist periodically but also continue to see or return to their primary care clinician. So, and oftentimes in the community the ongoing care from the primary care side is complementing the oncology treatment side for many of the patients and obviously for their family members. So, that's I think more common than the people that we see here who often may be-- who may have more complex or difficult situations. So, it'll be a mixture and it's important I think for us you know if we're practicing as oncologists to think about the other members of the care team. So, there are people in primary care who are doing this. They may-- there may be patients who have been-- there are patients who have been treated and they're free of disease for quite some time and they don't go back to the oncologist anymore. They just continue with their primary care physicians, so we need to communicate across the board to the-- to our colleagues and to be sure we're sharing this information. And that's part of the work that we're doing in our Education Committee is to be sure everybody understands these opportunities for people to do better so that they can offer them to their patients. Other questions right now? Okay, so we'll remember palliative care. Alright, well--
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Lynn Waldmann: Good afternoon and thank you for coming. I'm Lynn Waldmann and I'm with the Social Work Department. And if I don't get back to the palliative question please remind me. That survivorship in its total is from the day of diagnosis through wherever the journey ends and for some people that is death. For other people it is moving into a different pattern of life and it may be intermittent illness, it may be living for a long time and then suddenly getting a second diagnosis. There are many different trajectories there. At Anderson right now we are pretty much focused on the definition of survivorship as patients who meet certain criteria in their primary clinic and are determined to be a survivor based on whatever algorithms are set. And so, we've seen people who are out some from their disease.
Now, when they say that, I see people who are sometimes six months out of their breast-- out from their breast surgery coming into survivorship. I see people who have been twenty years in their primary clinic coming into survivorship, so it's a very wide range. Eventually the institution is going to go back to introduce some of the themes of survivorship right from the point of the, excuse me, diagnosis. There's a critical role in all this for physicians because you're very powerful in case you didn't know that. My role as a social worker is to help people move into transition. You know at the early point the focus is on you are a patient, the focus is on the disease and the treatment. By the time somebody's moving into our stage of survivorship the focus is the individual, the human being and their quality of life, which often times has been forgotten in the aggressive treatment period. Now, that's not putting anybody down, but that's what we want doctors to be doing is putting the focus on the treatment. Patients often times can't believe that they are survivors until the doctor says the word. I've seen that over and over again.
We haven't gotten to some research on this, but definitely when I ask a survivor, when did you become inside a sense of a survivor and frequently it's when the doctor used the word. And that's different than you're doing well. You know we're going to move you to survivorship because you're doing well. There's a distinction in there. Doctors measure the idea of survivorship in little algorithms and labs and numbers and that's the medical view of survivorship. But, there's a human definition too and that is that the person needs to feel that they have reached themselves a place of survivorship. And the good news and the bad news let me show you this little gentleman here. Great news, you're cancer free. And this is what it feels like for many patients. The doctor says you're fine, you're going to survivorship, but the reality is they continue to deal with a lot of issues, some psychosocial, certainly some medical. One of the examples I use is a young woman who is a bank teller and could not go back to her job because the side effect of her treatment was chronic diarrhea. And she could not stop at the teller station and say excuse me please. And so, for her it was a whole new career that she needed to look at.
Here's what we're doing in social work. I'm trying to keep this brief because of the reality of our time. But, in the clinical model that we're using is our social workers that I think in eight or nine survivorship clinics right now basically help the patient to tell the story of their own journey. Sometimes when they're in the midst of being treated they're not paying attention to what's really happening to them. They're so focused on the illness. Here we're looking for what we call the one in three. Recent studies have shown that two out of three survivors given the support and help from a psychosocial stand point will do fine. They will go on with their life and manage well. One in three will have a significant problem as they move away from their cancer treatment and those are the folks that we're really looking for. Those are the folks who isolate, the people who don't talk to others, the people who are living in constant fear of a recurrence. And so, we're always looking for those folks in amongst the population. People need to be able to say what is their history? When I was I diagnosed. How many times have you seen a patient who may have to immediately tell you when the diagnosis was and how it happened. It's kind of a reliving of where it came from and what I've been through. Some just want to forget it. Others say the experience of having cancer changed my life and I'll speak to that a little bit later. For many there's a sense of gratitude that they're well, but there's also something I've been calling comparison guilt and that is when somebody's in survivorship and they walk through MD Anderson and they see the people in wheelchairs with no hair. They feel very guilty sometimes that my cancer wasn't bad enough. And the reality is it doesn't matter. When cancer happens it's a giant big thing. As time goes along and people reach the point of a survivorship clinic hopefully that sense of being overwhelmed by the diagnosis will be part of their identity, just part of their history the same way their mothers, fathers, bank tellers, whatever.
The other piece is to allow people to begin to identify the life changes that have happened. We-- cancer changes everything in ones life. Everyone thinks it's over, but it's not. People constantly talk with us about the fact that nobody talks to me anymore about my cancer. They all think I'm over it and so I shouldn't be talking about it and therefore husbands and wives don't talk about it. And so, the patient oftentimes is churning just wanting to talk about what this experience has been, what it feels like today. Nobody's a bad guy, it's just folks aren't sure how to go about doing it. People get better as far as cancer is concerned, but the old problems are still there, marital problems, substance abuse, Alzheimers. One of the phenomenon that we're seeing that's very interesting is patients who go through their own treatment as patients if you will move into survivorship and are immediately hit by the role of caregiver or a spouse who suddenly becomes ill with something else or a parent that needs to be taken care of. One lady survived breast cancer and her husband had Alzheimer's disease, so she was now full time caretaker for him. She never had a chance to figure out herself as a survivor. We're seeing more domestic violence than I had anticipated, but it's there. Some of these things kind of go underground during the period of aggressive treatment. And when that treatment stops all of the sudden the reality is they're right there again. They never went away.
One of the other pieces in this is where is the caregiver? Because the caregiver's been on this journey too. I had a husband and wife in, husband was the patient. Kind of a guy that just sort of didn't have a whole lot of emotion I guess. And at one point I asked his wife, how's this experience been for you? And I can assure you she let go of four years of pent up feelings about the journey and he was stunned. He had no idea. And it's because they got so focused on the journey that things that were problematic in their marriage got put under the rug and now they were just blowing all over the place. The wife felt real good after she got all that out.
And then defining personal survivorship, what is it that-- what's the moment that somebody feels like a survivor? What do they do that might feel that? One lady said, "When the doctor told me it was-- I was a survivor I ran." She said, "I had been a runner all my life." And she said, "I suddenly said to my husband I'm going to run to the hotel." And she did. And in that run she became within herself a survivor. Somebody else it might be wearing a pink ribbon. There's a lot of different expressions. Survivorship is a process, it's not a goal. It's not a timeframe. It's a process. It's an existential journey for many people and sometimes that takes on a religious flavor. Sometimes it's a more holistic kind of view, but people change and they want to talk about that. And then last is choosing the course of the journey. What now? Moving forward, becoming who they want to be or returning to what they were before in a different way, taking charge of one's own life. A lot of times advanced care planning is very much something they are receptive to at that point because they're not threatened by immediate prognosis of dying. And often that's the point at which we can transition them to resources and services in their community, also to move them onto resources within the institution, and my colleagues will talk about some of that, so that they are part of something larger.
Two basic things, one is the doctor needs to use the word and secondly the patient needs to be out of a sense of isolation and in some kind of connection with other survivors. You're all just going to have your isolates, but part of what we do is to get people connected and there are a lot of ways that we do it. I wanted to share some humorous things that people have-- one lady said to me, "You know when I got diagnosed my biggest worry was whether my death insurance was going to pay for my daughter's college education." And she said, "Now I'm well and I'm worrying about whether my 401K will get—401K will get me through retirement." And that was her symbolic shift. Another woman said to me, "It was the point at which I was getting my first grandchild." Everybody has their own. This is one that somebody said that I thought was great. You know you're a survivor when you're back in the rotation for taking out the garbage, normal kinds of things. When the biggest yearly celebration is your birthday and not the day you were diagnosed. Those sound like little changes, but they're very big. And when you no longer have the urge to strangle the person who says all you need to beat cancer is a positive attitude. And also when you're Visa card is used more than your hospital parking pass. Your question about palliative care speaks to the bigger view of survivorship and then another context what that can mean is surviving the treatment, surviving the journey and honoring that point at which the journey ends. And there still is a survivorship component in that. So, I will close and turn it to my colleagues.
Dr. Foxhall: Alright Michelle.
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Dr. Fingeret: So, for those of us who work in psychosocial care I think you will find that we are all very passionate about what we do, which is very important. And I started at MD Anderson in 2004 and since that time I have seen a tremendous growth obviously in the survivorship program as well as the psychosocial services that are there to support that program. And Lynn said it up very nicely to talk about thinking about survivorship in a very broad way.
So, a lot of what I do in the program that I have actually served patients who are in the survivorship program as well as patients who are not in the survivorship program. And the treatment strategies and the approaches that we take as psychosocial care providers are often very much the same. So, a lot of this I think can be useful not only when considering patients who are transitioning into a new part of their care, but also thinking about patients all along that treatment trajectory. It's relevant for both. So, I'm talking about body image. I have a specialty service that I operate here at MD Anderson. It's actually limited in scope because it's only offered currently to two centers. It's the Center for Reconstructive Surgery and the Head and Neck Center and it's designed specifically to help patients deal with body image issues. And Dr. Bradford's going to talk next about her specialty program and so what you'll see is that we're really starting to recognize some very unique needs of survivors and how we can help address those.
So, starting with body image it's important for us all to be on the same page when I use that phrase because even in the literature the definitions are very inconsistent and people oftentimes have a very personal identification with body image or what it means to them that isn't the same, so it is helpful to get on the same framework here. Body image is considered to be a very multifaceted construct and it encompasses how you feel, how you think, how you perceive your entire body and it's functioning. It's not just about physical appearance. And the thing that's important to understand for our patients with cancer is that they obviously undergo a large range of bodily changes. These changes can be ongoing, they affect their appearance, they affect their functioning, they affect the way they perceive sensations, pain, all sorts of things encompass this very broad construct. But, the thing about body image that's the most important to understand is that it's entirely subjective. And so, here is where I put up the picture of the cat who looks in the mirror and sees himself as a lion. And this is the challenge that I face as a body image specialist and that you face as physicians and healthcare providers dealing with patients because what they see is not always what you see. There is oftentimes a very significant disconnect and we have to learn how to talk to patients and empathize with them and help them feel understood, even if what they are saying does not resonate with what you are seeing.
So, that's the very personal side of body image and a very complex side. And the other thing to know is that body image is not static. Just because a patient is coming in today without any body image concerns does not mean a month from now, six months from now, a year from now those concerns might not arise. So, we think about body image as being along a continuum and I'm not going to be able to go into a lot of details here.
We have the MD Anderson Psychosocial Oncology Manual that was printed in its-- it was Dr. Duffy or a Dr. Valentine who edited this wonderful book that has a tremendous amount of resources. In this-- there is a chapter in that book that's on body image or disfigurement as well as on a lot of other psychosocial issues. So, I encourage you all to check that out. But, this really underlies the idea that patients who come in to cancer treatment there is a normative amount of body image concerns that every cancer patient theoretically would have because they're having something happen that changes the way they experience their body. So, if you consider that most patients will have at least mild to moderate difficulties adjusting to body image changes it helps you understand how normal this is and how common it is. And if there's one thing that I want you to take away is patients feel understood when you help explain to them that it's okay to have these concerns. It's okay to be worried about changes to your appearance. It's okay to be worried about changes to your bodily functioning. You may have some patients who have problematic body odor for example as a result of their cancer treatment. That's body image issue. And all of these things it's-- patients sometimes are very reluctant to discuss, to acknowledge, they feel ashamed or embarrassed about these things. And if there's one thing that we can do is help patients understand that these concerns are very normal.
Obviously on this continuum you have patients at the extreme end who have very significant problems managing these concerns. They become very preoccupied with them. It affects their functioning, their daily activities, they become isolated, depressed, suicidal. We see a lot of this here, but I don't want you to neglect the other side of the continuum, which are patients who either deny they have body image concerns or they're not willing to talk about them. And there are going to be a group of patients who are genuinely not that invested or concerned about body image changes. They may be very resilient. But, you have to consider that a portion of these patients may be suffering in silence and they may very much be minimizing these concerns or nobody frankly has ever asked them about their body image concerns. And so, I just want to highlight a few things that may get you to think in a little bit of a different way when you work with patients.
So, this is the service that I offer here at MD Anderson. As I said, it's fairly limited in scope. We have been expanding and growing the service over time with resources and with new staff dedicated specifically to meeting the needs of patients. I’m not going to go into all of this, but this is a flier. We encourage patients to be able to pick up the flier and refer themselves. They don't require a physician's referral for this service. And anybody who has questions about that I'm happy to answer them after or you can get my contact information. And basically what we do is we really want to be able to provide onsite care for patients. So, we have specialists that can come into these clinics and work with patients and give referrals and the interventions are evidence based. We're using a lot of cognitive behavioral counseling, mindfulness and acceptance based approaches. And this is a very unique service. This is not something that we are aware that is offered at any other cancer center in the U.S. and the whole point of what we want to do as psychosocial care professionals is we want to collaborate with the healthcare team. We want to provide rapid feedback to treating physicians. It's not enough for you to refer your patients to us. We then need to give you the follow up on what's happening in that care so you can stay involved and just be aware of what your patients are going through. And obviously our goal is to prevent more serious problems from arising through early recognition intervention.
Body image concerns can arise at any time point during treatment. So, I have seen patients who are at the very end of their reconstructive treatment and that is the time when body image issues come because they have not-- they have this idea things are going to get better or they maybe have some unrealistic expectations about what the outcome's going to be. And it doesn't hit them until they're done that this is what they have to come to terms with and this is what they have to accept. So, that's a very significant time point where we see a lot of patients. Oh, what did I do? Okay, so there's a range of services that we provide. I don't think I have a lot of time to go into that, but just so you're aware of the different types of things. We do have patient education material, a lot of community resources and referrals. For patients who need body image therapy or need help at dealing with the appearance and body changes and we can't provide that help. One of the things that we're doing now is putting a resource list together that we can give to other centers they really have a lot of information on some of the other MD Anderson psychosocial resources that may help address that. We have programs in the Integrative Medicine Center for example, Supportive Care has clinicians they can work on these issues, social work, psychiatry, the Anderson Network and all of the volunteer services that we have here.
There are other ways to get some of this care and we can help direct people to that. So, if you wanted to know how would I even be able to identify a patient that has significant body image difficulties? Here's a few things that you could look for. People who are very preoccupied with their body image changes; they spend a lot of time thinking about it. They avoid looking at themselves in the mirror or they avoid letting other people look at them. They become isolated. They engage in very significant camouflaging behavior to the point where it takes up a lot of their time. They may do a lot of checking in the mirror or an unusual amount of reassurance seeking. So, these are all things that you can kind of look out for. So, to simplify it for you we-- what I've come up with is this idea of the three C's for evaluating body image issues in cancer patients. And the first one really refers to what I said before tell patients right off the bat that it's okay for them to have concerns about changes to their appearance or other body image changes. And if you lead with that and then you say, now are you having any of these kinds of concerns it opens the door for them. It allows them the opportunity to talk with you and that's the next question is, what are the concerns that you're having? Are they related to how you look? Are they related to your speaking, your swallowing, other body changes and then the bigger question is and how is this affecting your life? What are the consequences? Are you not going out in public? Are you not able to work? That is when you know it kind of gets to the point where this is beyond just normative mild average concerns and they're more significant; so, a few practical tips.
If you're going to talk to patients about body image issues, when I walk into a patient's room and I say I'm a body image specialist-- by the way I do not introduce myself as a psychologist. I do not lead with that. Obviously there's a stigma associated with that. Patients aren't always willing to open up. But, I say I'm a body image specialist, I'm here to talk with you about any concerns you might be having. It's very normal to have body image concerns and concerns about your appearance. Patients will cry; it's okay for them to cry. You have to be able, if you're going to engage in any sort of a discussion about psychosocial issues, to be able to tolerate and accept that patients have these emotions and they feel safe enough in this environment to be able to show them to you. And it's just about being supportive. Now, the real issue is how do I limit or contain this discussion? Obviously asking the patient about body image issues you don't want them to be able to now go on for 30 minutes or 45 five minutes about this issue. If there's one thing you'll remember it's that research will tell you that forty seconds spent, an additional 40 seconds of your time spent acknowledging patience concerns and listening to their concerns can significantly alleviate their anxiety, just 40 seconds. And it has to be framed in a way that there are other issues during this medical visit that you need other-- things that you need to discuss, other issues you need to address. But, try not to shy away so much from the psychosocial concerns that patients have because it can really go a long way towards helping them feel more supported, having a better physician-patient relationship with them. And the other thing is to have some resources and referrals ready for any type of psychosocial issue, but for body image obviously one of the things that we're going in our program is we're trying to give you those resources that you may need.
So, Lynn said this best. Do not underestimate the power that you have in conveying messages to your patients. They listen very carefully to what you say. And as a treating physician to be able to acknowledge for patients that it's okay for them to have these concerns, it can go a tremendous way towards getting them to open up and getting them the help they need. Obviously, there's going to be differences based on their treatment phase, but the empathic listening and that's just really simply allowing patients to speak in a way that they feel understood. You may have patients whose body image issues are so unrealistic and so out of what would be expected based on reality. They want something they can't have, but it's more about listening to them and educating them in a very compassionate way. And for a lot of patients who are very focused, hyper focused on their body image issues, you may have to educate them, reeducate them, reeducate them and list the other healthcare team members to reinforce those messages. And then of course once you make a referral we really would like for you to be able to follow up and understand how that patient received additional care and what it was like for them. And that's it.
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Dr. Foxhall: Alright, thank you. Andrea.
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Dr. Bradford: Okay. I know we're running out of time here, so I'll try to make this abbreviated. But, my role at MD Anderson is primarily to lead a clinical service focused on helping women with sexual concerns, but I'm going to talk a little more broadly about sexual concerns facing both male and female cancer survivors and talk about how you can be of help to both. There we go. Alright, so to start things off I'm going to refer back to that 2010 Livestrong Foundation survey that Dr. Foxhall had referred to. As you can see sexual function problems are among the most common lingering effects of treatment and this is among about 2300 survivors who had completed their cancer treatment. Sexual side effects unlike some side effects of treatment do tend to have a chronic worsening course if they're not, if they're not resolved either through self help or through other intervention. The majority of people with these problems don't receive professional attention. The nature of sexual problems in cancer survivors depends somewhat on the disease side and the type of treatment received, but the majority of problems are going to fall into one or more of these four categories. A loss of interest in sex may be experienced as a loss of spontaneous sexual thoughts or sexual desires or a lack of receptivity to a sexual partner. Loss of sexual arousal or problems may be experienced as erectile dysfunction in men, as a lack of vaginal lubrication or expansion in women or in either sex it may be a lack of subjective excitement during sexual activity. Pain is somewhat more typical in women, but it can certainly present in both sexes. And finally, some survivors report a loss of orgasm or changes in the quality or intensity of their orgasm.
Now, one thing that's important to remember is that sexual difficulties in this population tend to be a multi-factorial and there's seldom one single intervention that addresses the problem in its entirety. Sometimes the problem is related to general health issues or to psychosocial issues such as emotional disturbance, body image concern or other concerns about sexual attractiveness or performance. For men typically performance concerns tend to deal more with physical functioning, whereas in women we think of sexual performance anxiety as really a form of body image concern or it can be related to changes that happen in the relationship. And what Lynn had to say about how things can be put on the back burner for a long time in a relationship and then come up only after the cancer survivor has started to normalize in some ways. That's certainly something I see a lot in my clinic that there are issues that have happened in the relationship that have created some distance, but have just really been on hold for such a long time and they've been fomenting. And then when the couple decides to resume normal activities including sexual activity than these can, these can really come to a head.
Now, in addition to these risk factors of course there are physical effects of cancer treatments that can disrupt sexual function. Some patients tell me that their cancer treatment made an existing sexual problem worse, but many say that this is the first time since their treatment that they've ever had a problem with sex. And the specific treatment related risks are far too numerous to list in detail here, but suffice it to say any treatment that can affect the sex steroid hormone milieu, any treatment that affects vascular or nervous functioning in the pelvis, any treatment that is potentially damaging to genital tissues can disrupt sexual function. And that includes most treatment modalities including surgery, radiation therapy especially when they're delivered to the pelvic area, hormonal therapies such as aromatase inhibitors for women with breast cancer. Even chemotherapy can cause lasting side effects in younger women by inducing premature menopause. Fortunately, the effects of chemotherapy on men seem to be more rare in terms of causing long-term sexual side effects. And of course medications used to control other symptoms or other side effects of treatment can also affect sexual dysfunction. And probably the classic example, the most frequent one I see is SSRI antidepressants used to control other emotional disturbance or hot flashes. Some cancer survivors when they're faced with some degree of sexual dysfunction will decide no longer to be sexual. It'll just be-- they will just not any longer choose to have a sexual relationship in the way that most people would think of a sexual relationship. And that's something that we could probably prevent some of the time, but some people just choose no longer to be sexual. For the rest some are going to figure out a solution on their own, others will start to just avoid sexual activity and this is going to be something that causes them some distress. Both men and women will do this and they will not only back away from sex, but anything that hints of sex, caressing, kissing, close touching, things like that and you'll hear the same rationale for men and women. They'll say I don't want to start anything that I can't finish or I don't want to lead on my partner, that kind of rationale. Meanwhile their partners are often longing for some physical contact, some kind of affection even if it's not intercourse the way that they used to have sex. So, over time when that pattern takes place there can be a distancing between partners and to the extent that sex is a means of bonding, a means of smoothing things over, a way of greasing the wheels of normal living together day to day then that can allow for negative feelings to arise. And then you know start to be-- you know partners can start to relate to one another in a different way. There can be tension. There can be a sense of loss. And, of course, it can usually make the problem worse to avoid sexual activity altogether. This is the point at which many people present for treatment. And I've been talking a lot about people who have partners making that assumption.
Of course, that's not true of all cancer survivors and I've spoken to a number of unpartnered cancer survivors who are either divorced or single. They haven't found a life partner and they are interested in dating again. They feel like their lives are back on track, but this is often the sticking point. They cannot get past the idea of that first sexual encounter with a new partner because they know that that's going to be very difficult for them. And that may be the thing that prevents them from moving on with that part of their life in seeking a relationship. Now, I hope I've given a basic overview of some of the factors that might lead to sexual problems in our population and hopefully given you a taste of the multitude of factors that can contribute to these problems. We've really believe that this requires a multidisciplinary approach because the causes are often both physical and psychological. So, a multidisciplinary model of care we feel is most appropriate, but there's actually now some emerging evidence to that effect that when you add a mental health professional to a sexual medicine team in an oncology setting it results in better outcomes for patients.
Now, historically patients have either consulted a mental health professional or a physician first, they may refer to one another depending on what they think is the problem. They may manage it on their own and it's not to say that that's necessarily inappropriate. It's just there may be a missed opportunity for more comprehensive care. And an example I'll give is a prostate cancer survivor who has erectile dysfunction. If that person goes to a sex therapist in the community that sex therapist may help the person and his partner come to some acceptance of the situation, maybe come to appreciate intimacy again and enjoy non-coital or non-penetrative sexual activity again. But, if the person went to a physician with the same problem the physician may focus on resolving the erectile dysfunction and in both cases again not that either treatment goal, sorry, is necessarily a bad thing. It's just there may be a missed opportunity for a more integrated model of care.
So, our guiding principles are multidisciplinary care and having the mental health professional in the same place as the physician who's evaluating these. So, I partner with Dr. Andrea Milbourne, one of our gynecologist generalists and she provides physical examination and medical management of the medical components of that problem. For those of you wondering what about our male patients, we do have several services in place for male patients. Just skipping past here for the sake of time, in addition to the clinic based services, social work services and other specialized counseling services in the Genitourinary Center there is a sexual medicine service run by a urologist. We also have counseling and mental health services available from Supportive Care and Psychiatry. Sometimes this is a team effort. Sometimes these issues are related to something that could be best resolved through another service. So, oops I'm going backwards here.
Just to wrap things up, I wanted to make a couple of suggestions for talking to patients and I'm really echoing Dr. Fingeret here. Convey the message that it's okay to talk about this, it's normal and it's very common. You can use a 46 percent figure from the Livestrong survey if you need to nail that down. And I'm still-- I don't know why I'm still surprised, but I'm still surprised when somebody is a little taken aback to learn that this is such a common issue. They really-- a lot of people do suffer in silence around this issue and they don't want to talk about it. But, that requires that you become comfortable yourselves in talking about sexual function issues and that may be, that may be somewhat challenging. The first time you learn how to ask a patient about suicidal ideation that may have been uncomfortable too, but you learn to get comfortable with it. And you learn to you know be able to ask that as though it's just another point in your review of systems. And I would say that you have to go through a similar process to get comfortable asking about sex. But, we certainly encourage using the ubiquity approach, which is saying I ask this of all my patients or this is a very common. You know I'm not singling you out because you look like a weirdo who hasn't had sex in a while. This is-- this is something I do. This is something we do in our practice because this is important. And these are couple of talking points that you might use. There's also a really helpful textbook called, "Sexual Medicine in Primary Care." It's out of print, but the Kinsey Institute hosts it on their website and it's really, really a wonderful resource for sexual history taking.
So, I think we're at of time, but I wanted to leave you with one quote. A patient I saw for consultation a few months ago said, "I've been coming here for years" this was a patient in the breast center, no one ever asked me about it and then the last time I had my follow-up visit my doctor asked me if I was having any problems with sex. And I said, "Yes" and she was referred to me immediately. So, she said, "I guess things are changing" and I certainly hope they are. Thank you.
Dr. Foxhall: Thank you very much. Well, lets-- if there are any additional questions at this point we can certainly address those with our panel. I think it's-- well let's please give our panelist a big round of applause and thank them for being here. [Applause] As with many things at MD Anderson we have a huge wealth of resources and I hope if anything you'll take away from this that it's okay to ask about these things. Often I think we're afraid to ask if we don't know the answer to the question and clearly we have great resources here who can help us. So, any other questions for our panel members at this point in time? Yes?
>> I'm have for Dr. Bradford, so I'm from pediatrics and a lot of our-- not a lot, of some of our teenage patients are sexually active. We as pediatricians don't really like to talk about sex with our kids a lot and I-- as you're talking I realized that-- and for our educators we never ever bring it up. You know in the last visit one of my patient's came with his girlfriend who I know he has been sexually active with in the past. But, of course his mom was sitting there and you know we can ask the mom to leave, but it's just not something that we really talk to them about. Do you-- my question is, when you see adolescents later on or what would you-- how would you advise these adolescents?
>> You know it really depends on you know the nature and type of their treatment. In terms of asking about any history of sexual problems, that's actually a good thing to ask in combination with questions about fertility related issues. And in presenting that you know just kind of talking about their reproductive health in general if you want to frame that. And I think that it's important to address all of the reproductive health concerns in your particular population because they're-- they may not have thought about it, but it is-- you know it is a conversation that you probably need to have. So, I would suggest when you're evaluating that to talk about sexuality as a component of their reproductive health. And that might be-- that might make it an easier entree onto that topic, but also it can, it can address potentially some concerns that they either didn't know they had yet or that they're having and they didn't know if it was okay to ask. I do see-- I do see younger patients. I mean I had a young patient who -- who recently turned eighteen and she came with her boyfriend and they were sexually active and you know they were facing a lot of issues that were very different developmentally than what many of my patients who are you know fifty and older face. But, we can address a lot of the same problems using you know very similar strategies just we have to take into account the developmental level of that person.
Dr. Foxhall: Yes.
>> I'm Dr. Chan from rehab medicine. I'm just-- sometimes I'm a bit perplexed by the definition of survivorship versus what we call rehabilitation. I feel like the goals of both are actually quite similar. We look at quality of life, the effects of sexual, physical, mental dysfunction and how we can help cancer patients or any other patients from the point of diagnosis to throughout their journey. I'm just-- I'm perplexed because as a rehab medicine fellow right now, I've had very little interaction with survivorship and I'm just wondering if at MD Anderson there is any [Inaudible] diversions or that can maybe be made better, because I think that we would have a lot to offer each other in that sense?
Dr. Foxhall: Sure. Any comments?
>> And I think your point is well taken and I think you know we have only been into programs around survivorship and our institution for a brief number of years. And I think at this point it may be the institution's not ready to fully integrate all those pieces. At this point it seems like the focus is in primary clinics if you will based on the disease type. And that as things go along other components can because it's not a singular piece. I think that's what we're all talking about today. There are pieces from lots of different areas that all fit together. But, it takes time in an institution this big to get all those pieces to start to get—
>> And I think, I think it takes individual professionals to reach across the aisle and make the effort. So, we don't have an integrated umbrella where we have all the services where they're all connected. And I think that the best way we can work with that right now is to reach out and call one another especially when we're seeing a patient that hasn't-- being seen by another service that you reach out and call as professionals. And we can now open a conversation about how best to address that and how to best understand what each of our goals is in their care.
>> So, maybe one thing that we could do as part of the GME Series is have separate lectures on body image and cancer and sexuality and cancer so you could drill down a little bit into some of the issues you talked about, which is you know how do you approach the patient. What are the barriers? What do you do as they say, "Oh my God I don't know what to say." What do you do if they start crying? You know things that I think our expert panel touched on but that we couldn't really amplify a whole lot. So, that was a very good question and think about that for next year.
Dr. Foxhall: Not only you know the primary clinical interaction has been with management of lymphedema patients and that of course is a big need and we have a wonderful service for that here. You know the broader idea, the broader concepts I think we do need to talk about more. And I think we really are still in the formative stages of our survivorship program and thinking about that as somehow separate and apart from everything else we do is not what we want to do. We want to think about how to integrate all the wonderful expertise and experience that we have for many areas whether that's palliative or rehab to think about well, how can we deliver the best care for our cancer survivors. And out in the, in the free world you know outside of a place like this there are you know going to be probably a dedicated survivorship multi specialty service is going to be a rarity. I mean that's-- it's not going to happen. So, I think your-- you know you would be called upon much more frequently. And to be sure that, again, it's that communication issue, the professional issue, professionalism issue of letting our colleagues know you know that we know about this and we care about this. And we want to help their patients so that they you know are not afraid to ask because I think that to me is often the biggest barrier out in clinical practice and the community is people don't want to ask the question because they don't know the answer or they don't know what they're going to do if the person says that is a problem doctor. What can we do about it? Well you know, so this is all part of the education process, but it all is a critical area for us to share and to you know keep focused on the patient and doing the right thing for them.
>> We need some more info for clinicians?
Dr. Foxhall: More info, that's right, that's right. So, I will-- if anybody has any other questions or our trainees who are viewing this just on the web want to ask questions then please feel free to email me and it's Lewis Foxhall, lfoxhall at mdanderson.org or just you know type me in the little search. Foxhall, F-O-X-H-A-L-L and send me, send me your questions. I'll distribute them out to our trusted panelist here or others across the institution who may be able to help us. So, I want you to feel like you've had a chance to ask your questions and get them answered, so we can continue to work and grow. More is available on this. This is a huge topic, huge area. You see we got dedicated issues of important journals, but Dr. Manzoola [Assumed spelling] has an internal medicine course at the end of February that's going to focus on medical related issues on survivors. And then in October we're going to have our second biennial survivorship conference, which will be held right around Halloween time, so don't be afraid to sign up. So, it'll be a great program and hopefully you can learn more from that. So, thank you all very much, appreciate it.
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