Benefits of Survivorship Treatment Care Plans Webcast May 13, 2009 Scott Baker, M.D., M.S. Donald Wilhelm Please remember the opinions expressed on Patient Power are not necessarily the views of Seattle Cancer Care Alliance, its medical staff or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That s how you ll get care that s most appropriate for you. Introduction As, fortunately, more and more people are cancer survivors, cancer survivorship is an important part of cancer care. In the next few minutes we'll take a deeper look at the benefits of survivorship programs and hear how the Seattle Cancer Care Alliance Survivorship Program is really helping lead the way for patients starting a brand new life. All that next on Patient Power. Hello. I'm Andrew Schorr, and welcome to Patient Power sponsored by the Seattle Cancer Care Alliance. I'm happy to tell you I am now a 13-year cancer survivor, a leukemia survivor with chronic lymphocytic leukemia diagnosed back in 1996, and I went through active treatment for six months or so in a clinical trial. And it seems like it's worked, but you're always a cancer survivor. And there are millions of us. So as we are cancer survivors but not in active treatment, what does that mean for us, and who is our partner in that? Well, fortunately, the Seattle Cancer Care Alliance and the Fred Hutchinson Cancer Research Center has one of the really new and innovative survivorship programs with partnership with the Lance Armstrong Foundation, and we're going to hear about that in a minute. But let's talk first about how important cancer survivorship is, and with us is one of our powerful patients, Donald Wilhelm, who joins us from outside Detroit in St. Clair Shores, Michigan. And Donald has been treated now five times with lymphoma but goes on with a very active life. Donald, thank you for joining us on Patient Power. So this whole idea of having a survivorship program I'm sure seems to you and me as a good idea, doesn't it? Donald s Story Don: It does, it is, and through my history, my experience traditionally patients are pretty much left out on their own once you leave the oncologist's office. You go through this support system that you've had for three months, six months, 12 months or more, and then you're pronounced magically in remission and, boom, everybody's gone and your on your own. 1
Now, you had one encounter with the dermatologist where he actually commented that he was taking special note because you about a cancer survivor, right? Don: True. He was the one standout, a person I didn't know. I made an appointment for a rash that I had on my forehead. It was completely benign in my opinion, and he sat me down, he looked at my history, which I thought was just taking forever to go through a history, and he said, well, sometimes if it sounds like a horse, it gallops like a horse, and it feels like a horse, it might still be a zebra. Given your history we need to take all those precautions. That was the one and only time, really, that I saw a link between my oncology life and any medical needs outside of it. All right. We should mention that you've written a wonderful book for people and that is, This Time's a Charm, right, and now having gone through cancer treatment five times. And of course we wish you a long life, but you'll always, like me, we'll always be a survivors, right? That's always in our head. Don: Absolutely. It's a club or a group or an association. To get into it, it's a terrible way to get into a group of amazing people, so once you're in, you're in for life. Well, we'll continue our discussion with you, Donald, but now let's meet Dr. Scott Baker. Dr. Baker is a pediatric medical oncologist, and he has helped many children, and I'm sure young adults as well, and now he's become the director of the Survivorship Program at the Seattle Cancer Care Alliance and the Fred Hutchinson Cancer Research Center. Dr. Baker, so you have a survivorship program there. This is really quite innovative and is filling a real need in oncology, isn't it? Services Dedicated to Survivors Yeah, it definitely is. And programs like this have actually been around in the pediatric oncology world for quite some time, but for adult cancer survivors, which you know the millions of people in the US who fall into that category, the same kinds of services have really not been available and even today are not available that commonly, so we're here to hopefully change that. All right. So let's describe what that is. So somebody is in active treatment, like I was for six months, Donald has been in it numerous times now. When you're out of active treatment then is the idea that they can enroll in a program like yours and there's actually a survivorship plan? And if that's right, what does that mean? 2
Yes, exactly. It's actually a relatively new concept, and so there's two parts of it. One that we call a treatment summary, and the second called a survivorship care plan. And really it's to prevent exactly what Donald mentioned for cancer patients coming off therapy so that they don't feel that they're out there on their own and left out to sort of fend for themselves. So what's recommended with these is that every cancer patient at the end of their active therapy receive a treatment summary. And that summary then basically outlines the type of cancer that the patient had, the stage of it, any specifics related to the diagnosis that might be relevant for that particular type of cancer. And then the summary would also detail the kinds of treatment that they've had. So if they've had surgeries it would list those. If they've been treated with chemotherapy drugs it would list those and typically the doses that they received and the number of cycles. And then also if they received radiation therapy it would include details related to the site of radiation and the dose of radiation that they received. So then that patient knows exactly what they were treated to, and if they also go to another physician they can provide them with a simple one-page summary that says this is what I had and this is what I was treated with. And like Donald mentioned with the dermatologist, this past experience is important to what might be going on right now. And then the second part of it is what we call the survivorship care plan. And the care plan is really providing direction to the patient as well as to primary care physicians or other physicians that might be seeing that patient that says, basically offers guidelines related to either ongoing either surveillance for the cancer they were treated for, potential surveillance for other cancers that they might be at risk for, recommendations related to monitoring of just their overall general health that's typically related to the type of treatment that they've received, and then also recommendations that some of what we call here are more wellness recommendations that offer guidance related to nutrition, physical activity, general screening kinds of healthcare things, the types of things that sometimes cancer survivors forget that they need to think about as would any other person in the general population. And then it gives them a plan to follow, and so any physician that they then deal with can also utilize this plan to help follow and take care of that patient and make sure that all the appropriate tests and screening are being completed. Now, if they're here in Seattle or come to Seattle with some regularity then they might revisit the Survivorship Program, and would they have an annual physical or kind of a, they'd sit down with someone such as yourself? How does that work? Yeah, exactly. So the care plan does provide the patient with the ability that their primary care physician could carry out that plan, but also within our survivorship clinic itself we typically follow patients on an annual basis. And initially at the first 3
visit, which is more comprehensive where we really go through the entire treatment summary and care plan, the follow-up visits then really are more carrying out that care plan with them. And some patients prefer to have that done within the context of the survivorship clinic, which does occur in the same facility where their cancer treatment was provided here, but we do have patients that just come to us for a one-time visit to get their treatment summary and care plan and then don't necessarily continue to be followed by us, but we're certainly available there to do that if patients want. All right. So let me share a few stories, and I'm sure you have some, and I'm sure Donald have some. So you mentioned about the other conditions that people should be attentive to, and I'll never forget when my oncologist said, well, let's talk about your heart, and let's just consider whether you in your late 50s should take a baby aspirin. And I said, what do you mean, we're talking about heart. You're my oncologist, and all we've ever talked about is whether there's any sign that my cancer is coming back. Well, actually, I found that he asked and that we could talk about my heart really a wonderful thing, a sign of life, you know. So when you talked about other things that everybody else in the population needs to think about, that would be an example, right? Do you need to take a baby aspirin to just have heart health. Long-Term Effects for Cancer Survivors Yeah, exactly. There are a lot of those kinds of things that end up getting overlooked in cancer survivors because some of them don't end up being followed routinely by more of a person with a primary care background that might think about these types of things. But also the important thing is that some of the treatments that cancer patients receive are going to put them at higher risk for developing, for example, cardiac or heart conditions that might occur at an earlier age. And so some of the things that you might not think about until you are maybe in your 60s or 70s you might think about in your 40s or 50s. So there's screening like that that should take place. And there's other examples related to potentially kidney function or lung function, things like that. Each of these types of treatments can have its own specific kinds of long-term effects. We're going to ask you some questions. So, Donald, can you mention some of the medications you received? You probably know some of the names for lymphoma. Don: I've got a very long list of them, yes. But regarding heart adriamycin is one of them that I received a lot of and actually have maxed out my lifetime amount. Well, let's use that as an example, adriamycin. So, Doctor, that drug is used in a lot of cancer, certainly a lot of women who have been treated for breast cancer 4
have received it. So let's talk about that and related to heart. So if that's in your record then where might that fit in with a plan and vigilance and screening? Yes, so that's really an excellent example because it is fairly commonly used across a wide range of different cancer types, and it is one that we know definitely has the potential of causing long-term effects on heart function and that patients really need to be monitored for that. So that's a good example that if a patient doesn't know at the end of their treatment that they received that drug and that their heart should be monitored, if they're not followed in a cancer center where that maybe is more routine, that kind of screening and follow-up might not ever be completed, and it's really because the potential exists that the function of the heart can decline over time. But there are treatments that you can actually provide the patients that help to not necessarily reverse that process but can help the process or slow down the process significantly and really prevent it from becoming a significant issue. And so that's a lot of the reason we do a lot of the things that we do is because there are treatments that can help to either prevent this potential complication from even developing, or if it develops and you recognize it you can treat patients and prevent it from getting worse. Risk of a Second Cancers Now, let's talk about the risk of another cancer. So we worry always, does the cancer that we've been treated for, will that come back, and so we're worried about recurrence. But we're all of us as cancer survivors, correct me if I'm wrong, we are at risk for a second cancer, right? Yeah, that's true. And that's mostly because a majority of the chemotherapy drugs that we use actually damage cells and damage DNA and that normal cells in your body typically repair that damage, but occasionally the repair is not perfect and can then increase the risk of newer second cancers developing. The risk is again really related to the type of chemotherapy drugs that were received, so they don't all have the same risk. But we know which ones have the highest risk, and those are patients that should be monitored in more specific ways than others, for example. The risk overall is still very small, but it's definitely higher than the general population, and again it kind of depends on the type of treatment that's been received as far as what you might recommend to a patient for a particular screening for that. And, for example, women with Hodgkin's disease who've received radiation therapy that involves the upper and middle part of the chest have a higher risk of developing breast cancer, and so those patients really need to receive mammograms starting at a fairly young age, much younger than what you would start in the general population. And with that kind of screening and early detection if they develop that second cancer it could be very treatable. 5
Right. You know, one very unusual example, we had done a program with another physician at the Seattle Cancer Care Alliance, Paul Nghiem, and he's an expert in Merkel cell carcinoma, which as you know is very rare. But in talking to him we found out that people who have had my disease, chronic lymphocytic leukemia, are at increased risk. Well, I had never heard of that before. So I would imagine, then, when I go to the dermatologist I should be sure that they know that I had CLL, and while maybe it's a very unusual time that a community dermatologist would see Merkel cell it would be something we should look out for, right? Yeah, that's another good example. And there certainly are types of cancers that can be associated with a higher risk of other kinds of cancers, and again that might change the screening recommendations for those patients. Cancer Treatment in Adolescents and Adults Let's talk for a minute about pediatrics, since that's been your home base. So here we have kids now, so many, fortunately, who were treated for leukemia maybe at an early age, and where it used to be a fatal diagnosis now the vast, vast majority are living and going on to hopefully live a long life. But they were treated with powerful drugs, and they were treated as a kid. So here's that kid hopefully now putting cancer in what I like to say in the rearview mirror though, but as an adult they really need to take into consideration, and their providers do as well, pretty aggressive treatment they had earlier on, right? Yeah, they definitely do. And kids are treated really across the board very aggressively for the types of cancers that they receive, and the difference in children undergoing these types of treatments are that there are certain organs that are more susceptible in children than they are in adults. And the most significant is probably the brain, so some of the treatments, especially radiation therapy that may involve the brain, can really have very significant impacts in a child, whereas in an adult it may not cause anything nearly as significant from a long-term side effects standpoint. So those kids certainly need very aggressive monitoring and follow-up and interventions to help with whatever kinds of problems that they may develop. And it's sort of related again to the age that they're receiving the treatment and the fact that a lot of the organs in their body are still growing and developing. All right. We have so much more to talk about as we continue our program on the benefit of survivorship treatment care plans, and the survivorship program at the Seattle Cancer Care Alliance is a wonderful example. We'll be back with Dr. Scott Baker, who is the director the Survivorship Program, and Donald Wilhelm, who is a five-time cancer survivor and joins me to advocate for participating in a program like this. All that coming up as we continue Patient Power right after this. 6
Welcome back to Patient Power. Andrew Schorr here, and thanks to our sponsor Seattle Cancer Care Alliance. We're talking about survivorship, cancer survivorship, the benefits of having a survivorship treatment care plan and if you can participating actively in a survivorship program. They have one at the Seattle Cancer Care Alliance and Fred Hutchinson Cancer Research Center, and with us is the director of the program, Dr. Scott Baker. And also joining me is another cancer survivor, I'm a leukemia survivor, joining us is a lymphoma survivor, my friend and one of my favorite powerful patients, Don Wilhelm who joins us as well. I lives outside Detroit, Michigan, and I'm here in Seattle. So, Donald, so there you are, you're in your 30s, gone through a lot of cancer care, but in between all that tell us the story of just feeling low energy and what you did about it. Donald: Yeah, so part of the thing that I think the follow-up treatment plan or survivorship care plan would help alleviate are symptoms that I presented with. For instance at 36 years old or so I had fatigue, I'd lost a lot of muscle, I'd gained weight around my midsection and my memory, short-term memory was just shot. I couldn't focus, and I know from having what we call chemo brain during treatment that that's normal, but they say it goes away, but sometimes it doesn't. So I went to the doctor. Eventually we got to it. It took several visits, but my testosterone levels in my blood were that of a 60-year-old man, so it was a simple prescription to write for a product and boost my testosterone level. Made all the difference in my life. And those are small things that if it was in a treatment plan and in a survivorship plan, you hand it to a physician, he may be able to pinpoint that and say, I think I may know right off the bat and know what your problem might be. Good example, Scott Baker? Yeah, definitely. And that example actually is very common in children and adults. You know, again it's something that's based on the age, and in his mid 30s, you wouldn't expect a male in his mid 30s to have issues related to his testosterone levels, but when you have a cancer survivor whose received a lot of chemotherapy then certainly that's one of the things that can be a big problem and should routinely be screened for. You know, I'm just thinking. So often, we've done so many of these programs where, you know, it's like you go to a noncancer provider, and maybe some of your history or maybe it's way back if you were treated as a child, and you don't mention it or it doesn't come up or they don't ask, and so if you said, well, I'm tired. So are you getting enough sleep, are you worried about stuff at work, million other things, and this whole thing of the testosterone level would be way down the list, right, Dr. Baker? 7
Yeah, exactly, and it would be something that might not even be thought of at all. And there's lots of other, Donald mentioned symptoms of various things that he was experiencing, so there are a lot of things that we deal with in our care plans that do talk about symptoms, and so memory and fatigue are some of those. So that's very important to point out in the care plans that some of these symptoms are normal but some of them are not normal beyond a certain time period and they could be related to, you know, X, Y or Z, so that's very important for patients and their physicians to be aware of. He mentioned chemo brain, and I've used that term too. So that is real, and was he right that the latest research shows it will subside? Where are we with that? Because I had the worst time, when I certainly did, with people's names. Is it just getting older, or was it the chemotherapy that I had over many months? You know, in the majority of patients it's, it resolves nearly entirely but not necessarily in everybody. And memory remains one of the things that seems to be affected more on a long-term or permanent basis. You certainly hear that a lot in that they just don't have the same kind of short-term memory that they used to have, and again not related to age, just more related to the treatment. But what we really don't know is why that occurs, you know, what's going on from these treatments inside a person's brain that really leads to that. So there is research going on trying to determine that as well as also trying to see if there are medications that may actually help treat those symptoms in patients who really have it to the point where it's, I wouldn't say disabling but to where it's really interfering with their daily functioning Lessons Learned in Cancer Survivorship As we have people living longer as cancer survivors even with advanced cancer, and I interviewed, happily, a man who was a 25-year advanced prostate cancer patient just recently, so that is great. The guy goes jogging and is doing a lot in his life as an older gentleman. We're kind of on a journey with folks like you together, aren't we, trying to understand how, what's special about us, is one way to say it, I guess, as we live longer, fuller lives, right? Because there could be not only things that could happen later, like I think you call it late effects of treatment, or even worries about second cancers, but we just don't know. We're learning, right? Yeah, that's definitely true, and that's part of what I tell patients, the potential benefit of continuing to come back to our survivorship clinic is that even though obviously we've had cancer survivors around for decades basically we don't have the research behind that that really tells us what happens in somebody who is treated in their 20s, 30s, or 40s and then lives another 30 or 40 years and what happens over that long period of time. And even the same is true for older adults 8
who are diagnosed and treated, and just because of the life spans now and the success of the treatments there's really not a research to really tell us what to expect over the long-term for cancer survivors. Now, let's talk a little bit about the logistics. I want to give a phone number to people that if you want to participate in the Survivorship Program at the Seattle Cancer Care Alliance and the Fred Hutchinson Cancer Research Center here's a phone number. 206-667-2814. 206-667-2814. And you can send an e-mail very simply, survivor@fhcrc.org, which stands for Fred Hutchinson Cancer Research Center. So survivor@fhcrc.org. Now, Dr. Baker, so when somebody goes to your clinic then, then they'll have a care plan, survivorship care plan, and then hopefully they'll keep participating, come back for checkups, they'll have a place to call. And then I know there are other programs includes support groups that people can be included in as well, right? Yeah, there definitely are. Through the Seattle Cancer Care Alliance we have support programs. We also sponsor an annual conference for survivors themselves that this one coming up in June will be the third one of those that we have sponsored. And that basically is about a three-quarter day educational conference for survivors, and we cover a whole variety of topics as well as have a series of break-out sessions where they can choose more directed topics that they might be interested in. So it's a great educational experience as well as a great network experience for survivors themselves to be together with other cancer survivors. One of the things we're actually doing this year also is an educational conference for primary care physicians to begin the process of educating them about the special needs of cancer survivors so that the care for survivors can be of the same quality or level in the primary care setting that it can within a cancer center itself. So let me ask you this, and I want to aim this at Donald. So, Donald, you've written your book, This Time's a Charm, and it's really about the whole person. I hear you saying that too, Dr. Baker. So, Don, it's about this medical vigilance, I guess is what I would say, as well as really support for the whole person. What do you think, Donald? Donald: I would agree with you. My book encompasses as well as the physical also the emotional, and maybe you can fit that into a survivorship care plan in some way, shape or form, but folks need to understand that there's an emotional aspect there as well, and again you have a complete support system. That's why a lot of cancer patients feel better when they're in treatment. They feel like they're doing something about it and they've got more support there, whereas if they had that plan maybe they might be a little more excited to be out of it. 9
That's a good point, isn't it, Dr. Baker, because then you feel you have a plan. Where there's often that aggressive treatment plan when you're in treatment, this now applies a plan to your new life? Yeah, exactly. And in our plan we do try to address psychosocial issues that survivors will be facing also, including return to work, insurance, emotional issues, anxiety, those kinds of things. We actually fairly commonly will refer patients for some of the psychological services that are available here or recommend that to them in their own communities also, so that is a very important part of it. Well, I know you're relatively new to Seattle from Minneapolis, so we've given you milder weather and a very unique program. So what you're doing with the Lance Armstrong Foundation, Fred Hutchinson, this is really, hopefully, a model, right? Yes, it definitely is, and it's a great effort that the Lance Armstrong Foundation initiated about, oh, three to four years ago, I guess, in really funding eight centers across the United States that were designated as their centers of excellence in cancer survivorship care. And what they really wanted those centers to do was to develop model programs and then also set up mechanisms so that those model programs or those models can be disseminated to other centers across the country. Each of those centers actually has at least three community-based affiliates that have been established as part of this centers of excellence networks also. So the plan is to really disseminate this as much as possible. So, my friend, Donald, this hopefully will be the wave of the future, right? Donald: I'm excited. You know, for some was us he said you get a one-page summary of your treatment. Some of us might need more than just one page Yes. Donald: but either way, just hand that off to them, that would be outstanding. And it would help alleviate that fear because every cancer survivor walks around, and every trick or every twinge or pain is a constant, instant reminder, oh, my god, is my cancer back. And at least now with this plan you can have some relative assurance, hey, I'm doing everything I'm supposed to be doing, I'm on track, I'm doing my part, and I'm going to keep living my life and keep a positive mental attitude. 10
Right. Well, Donald Wilhelm, we want to wish you all the best and continued, you know, been through it now five times, but hopefully lead a long life and a full life every day. All the best to you, Donald. Thank you for being with us. Donald: Thank you, Andrew. Thank you for having me. Thank you, Dr. Baker. Yes. And Dr. Scott Baker, director the Survivorship Program at the Seattle Cancer Care Alliance and the Fred Hutchinson Cancer Research Center, thank you. I want to give that phone number one more time. 206-667-2814. And the e-mail is survivor@fhcrc.org. Dr. Baker, all the best. Yes, thank you. Well, this is what we do on Patient Power, and I hope those of you listening can joining me, if you've been touched by cancer, let's be cancer survivors with a survivorship care plan for a long, long time. I'm Andrew Schorr. Remember, knowledge can be the best medicine of all. You've been listening to Patient Power sponsored by the Seattle Cancer Care Alliance. Please remember the opinions expressed on Patient Power are not necessarily the views of Seattle Cancer Care Alliance, its medical staff or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That s how you ll get care that s most appropriate for you. 11