Survivorship and Supportive Care

October 21, 2019

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October 2, 2019 | Tara Sanft, MD

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00:00About his patients uhm I would go to him an I learned a lot here, too. I'm going to pull up my slides here. I'm sorry. I was a little bit late my husband.
00:12Is a surgeon here and he had a promotions reception so I was there and I'm really excited to end my night with you. An I you know survivorship always goes last so I know how to stay on time. My name is Terra stamped. I see some familiar faces in the crowd. I'm the director of the survivorship program here.
00:31Um and you know, many of you in this room. I've heard these words and when you're told you have cancer. My guess is your reaction is as unique as you are depending on where you are in your life and circumstances that are happening to you. I've been here for almost 10 years and I've been able to meet many survivors in my clinics. You might recognize Robin Roberts. She was one of our speakers, and her cancer diagnosis really called on her spirituality to get her through.
01:05And this is a woman who won a contest choose a photographer, she goes across the world. Photographing people who've had cancer in her, her big issue was about food and what should I eat to avoid recurrence or what do I need to avoid so my cancer doesn't come back?
01:21Um and this is the patient a deer patient of mine who actually had metastatic disease. For many, many years, an really did not want cancer to define her an part of that was riding 100 miles in our bike ride. She rode for farther than I did that year and so these are all just some common themes that we hear but recognizing that not everybody is comfortable with the term survivor. It's something that we've sort of decided on as an umbrella term but really it's just about.
01:52Supporting the whole person in meeting them where they are, and helping them meet their goals.
01:58So you know with that just to be clear, um survivors are anyone who's been diagnosed with cancer and it spans from the time of diagnosis throughout the balance of his or her life.
02:11There are millions of survivors right now because of better detection and better treatments. I'm sure you've heard about these things tonight and people are able to survive. The treatments and live longer. You know, such that there is 17,000,000 cancer survivors in the United States. Today this is going to grow exponentially and for the vast majority of our breast cancer patients they are still alive. Many years after diagnosis and these this is all stages.
02:41So really, and includes everyone.
02:45In that context. We think of it in sort of 3 big categories. This is an old article from a Doctor Who also is a cancer survivor and went on to publish in the New England Journal decades ago, now about these sort of 3 phases of survivorship.
03:01I'll just point out that most of our programs kind of are in these last 2 phases, so briefly the acute phase of survivorship starts at diagnosis and it goes throughout your diagnostic process and your treatment plan. This is you know sort of the Rapids going over the waterfall.
03:21It does happen to be a time where there is a lot of support. So so places like here. We have a lot of networks and support systems in place to help you hopefully Shepherd you through this treatment process and also communities are built to help people get through their treatment.
03:39After active treatment ends this is where the extended survivorship starts in and this is where I feel like what we do is really important in survivorship clinic because this is a time of really high uncertainty. The treatments over an we hear from a lot of patients that are doing just fine. In some patients feel like? Why don't I feel happier or when am I going to get back to what I was doing before this is taking longer than I thought so the idea here is you're doing better, but you don't know what's coming around the bend or what might be lurking behind you.
04:14Extended or long term survivorship is many years later, where the risk of recurrence really goes down dramatically. But the long and Lee effects long term in Lee defects can creep up as the reminder and you know this is where like long term survivorship programs mostly focus on surveillance and kind of keeping you healthy come into play. But you know it's something that people deal with still on a daily basis, sometimes.
04:45So with that in mind, I just have kind of 3 brief objectives number one. What are the agreed apon tenants of survivorship care and if you've heard of survivorship care plans uhm you know they're in the news. Sometimes and what is the evolution of those and that movement and then I wanted to just end with the survivorship clinic here and talk a little bit about what we do, and some initiatives that we have in place to sort of expand the reach.
05:15So the agreed apon tenants are for things number one surveillance make sure that the cancer isn't coming back or you don't develop new cancers #2 prevention and this focuses mostly on healthy behaviors and lifestyles. So we talk a lot about managing weight. Combating obesity physical inactivity. Managing stress and course smoking cessation number one thing you can do to prevent cancer.
05:43We talk about assessments and treatments for late in long term affects and coordination of care and make sure you know who's in charge.
05:52This is there's many guidelines out there, although very few that are dedicated to survivorship. This is our national comprehensive cancer network, which is a set of guidelines that all of us are held to in how we practice. I'm fortunate to be a vice chair of this guideline annetts professionally very gratifying once a year we get together for 2 days. A bunch of survivorship specialists in a room and try to talk about how we can meet meet those tenants of survivorship care.
06:22There are patient forward facing materials as well, but this is what our guidelines ended up looking like and we're trying to hit all those main tenants and have some some language that all providers can understand.
06:39So if some common themes to survivorship fear of recurrence almost universal an independent of your actual risk of recurrence fatigue again almost universal, especially patients who received chemotherapy or radiation therapy report a lot of cancer related fatigue different than being tired. It doesn't go away with rest. An it can persist sometimes longer than a year but but on average. It can take up to a full year to really feel.
07:11Better and then I put in here sexual dysfunction because I feel like we don't talk about it enough and we need to start talking about it more an I know that there's some supporters of that in the room, but it's the 3rd most common concern of many, many cancer survivors men and women in all different types. And despite this, you know less than half of patients with this concern seek treatment. So we really need to make these issues able to be talked about in addressed.
07:42Again, I'm healthy lifestyle is really important, he ran. It's important to survivors. The vast majority want us to address in activity weight issues and I. A quality but we also know there's a merging evidence that healthy behaviors matter in terms of reducing risk of recurrence and mortality.
08:04I included this slide because it shows in the black circles on the left hand side that physical activity. Both before diagnosis. That's the Top section an after diagnosis is the bottom section improves breast cancer death and death from all causes what I love about this slide is the second section. Because these are all patients who did not exercise before their diagnosis.
08:35And even with that, starting after their cancer. They were able to show that exercise impacts recurrence and mortality. So is really never too late to start and I think it's just our mission to talk more about you know, we're not talking about marathon running were just talking about adopting some simple exercise habits.
08:59So you know, let's move on to survivorship care plans. I don't know if any of you have heard of these before over 10 years ago. There was a Commission Institute of Medicine report here. It's not a survivorship talk if you don't include this picture called lost in transition. It got a lot of press and in that they recommended that patients receive a survivorship care plan and the idea. Here was like if you were discharged from a hospital. You get a discharge summary. So when you're done with cancer care.
09:30You should get a survivorship care plan. It makes so much sense. It really includes a record of what you were diagnosed with what you were treated with what your plan is going forward and make sure that you know like all the different referrals that can be made for you.
09:46This is important because um survivors don't really remember all the details right. They were going over the waterfall so a lot of things were missed, and just last week. You know impatient under Stage 2 or stage 3. I really confused about what was told to me. Why am I an endocrine therapy? What is endocrine therapy right so the you think as a provider explaining all these things but in the midst of all this information. A lot is not sinking in.
10:15Not only that, but our follow-up care is really chaotic and there is evidence that we under adhere to some guidelines. But over prescribe unnecessary testing an survivors are not always sure who's running the show.
10:29Um these survivorship care plans have been very hard to operationalize their mandated by these governing bodies that decide if you're a comprehensive Cancer Center or not the effort was good. It was Noble to try to get survivors. The care that meet those for tenants. But the truth is, it's very hard to give pieces of paper to people and change their life. So this is hot off the press just last week, one of the standards has changed to better reflect.
11:02What I think is really important which is a comprehensive survivorship program that provides services to patients and Taylors? What they need and make sure they are plugged in with their individual preferences.
11:16And this is the Commission on cancer is newstandard, saying, You need to have a survivorship program. An you need to have at least 3 services so I think we're evolving to make sure that meaningful care is accessible to all survivors.
11:33And just this week, so just Tuesday. What are we this is Wednesday so just yesterday the patient brought me this Washington Post article from? I think the week before an it's talking about survivorship and you know what's interesting is I just kind of highlighted that sidebar there. The Top 5 concerns. These are actually not elements that are in a survivorship care plans, so again illustrating that while our intentions are good with those. I think that we're falling short a little bit with meaning our patients needs.
12:09So let me tell you a little bit about the survivorship clinic here what we do an then what some future steps are.
12:18So we are a multidisciplinary clinic and we were founded in 2006 by a cancer survivor who said, I wish that I had had this when I was diagnosed and going through my treatment and in that sort of extended phase of follow up.
12:35Uh it's the only multidisciplinary clinic in Connecticut, an it's a 2 hour sort of highly personalized visit 1 on one, not a group session each patient meets 30 minutes with each provider and you walk away with what I call a highly personalized survivorship care plan.
12:55We have a medical person so it's myself and there's also a physicians assistant who makes the plans and we share the visits.
13:03We go over like those questions like? What is the diagnosis? What was the stage? What was the treatment. We see patients of all different types of over half are breast cancer survivors. But we see everyone an we go over you know what are? What are the side effects you're having now are they going to get better are they going to be chronic? What's your health scenario who's in charge of web thing.
13:27The social worker is also a trained provider of cognitive behavioral therapy. She also facilitates a meaning centered therapy group and also the adolescent and young adults support group, so she's got this wide net that she can speak to with her expertise and she talks. A lot about fear of recurrence, which again almost universal. She also has many resources to address the financial toxicity that cancer comes with.
13:58Our physical therapist is survivor himself and he helps right the board exam for oncology rehab and his main focus is on personalized exercise program so he sees people who used to be triathletes, but he sees a lot of people have never been in a gym and never want to be in a gym and so really meeting. The patient where they are, and what is the scenario that can get them to meet their functional goals.
14:27And then our dietitian, she has spent decades counseling survivors. She's been involved in multiple R 01 level. Studies looking at healthy diet and exercise in cancer breast cancer survivors specifically she talks about weight.
14:45Changes in weight goals eating habits and she does a lot of myth busting so everybody's like. Oh, sugar feeds cancer or if I just take these supplements you know everything will be good and so she. She really spends a lot of time addressing things like that, and I learned a lot from her.
15:06So how does it work we do a very extensive intake and we ask patients just free free right in your Top two concerns an when we started this part of the intake. We weren't sure like we'll have to see what they are, and see if we can address them and the good news is after the first 300 or so people filled this out. We had a student go through and categorize them and lo and behold, they really do did fit into what the providers expertise was so we feel good about that.
15:35We've also had a student come through and do some observations in her chart review and she found that there were 75 unique referrals that were made in the course of her observations so these include ordered referrals that will help you get the long term care that you need through our system, but also our group knows about the programs and they know about your community and and we have all kinds of websites in apps and so I really do think it's a personalized approach.
16:05An and everybody comes out with something.
16:11So one of our successes been we've shown that we do decrease distress after our visits in this is we showed that it's still low at the eight week follow up which is nice. We have very high patient satisfaction and those are the 2 most important things to me. Fortunately, we've been a model program. For many different National Cancer centers and we've been able to help train future survivorship providers coming out of Mayo Clinic and.
16:42And supported through our Asko Foundation.
16:46Just today, we launched a like a telemedicine train. The trainer program and this was actually a national group and we had 18 people on the call 18 sites and these are multidisciplinary programs that want to learn more about how to sort of work together to get survivorship care to their patients.
17:07We have very nice comments and this is what I go to and I've had a bad day because I feel that we're really servicing our patients in a positive way.
17:20So again you know cancer is a teachable moment for many people. It's kind of a time in your life as an adult where you're ready to make some changes and so I feel like if we can talk about that and try to help you meet your goals. That's what we're here to do, but oncologists in general don't get a lot of training and how to talk about healthy diet and exercise. And so we don't do a lot of that kind of talk and survivors don't really remember being counseled on it, so we need to.
17:50To sort of help make those messages easy for us to learn an easy for you to hear.
17:57Survivorship clinics are important because oncologists are not able to multiply fast enough to meet that demand in terms of the number of survivors so this is a really unhurried type of visit where you can get that kind of counseling rather than in like a general follow-up clinic.
18:17So, in the last minute, you know what are we doing next?
18:22Right now we have a study that's funded to start at diagnosis and we're instituting a healthy diet and exercise program to try to combat some of those negative affects before they ever start. So to maintain weight to help prevent side affects an to hopefully help chemotherapy be completed easier so that on the backside. There's not so many survivorship issues. We also have um NCI funded study looking at resilience trajectories as patients transition from that.
18:57Acute Phase 2 extended phases.
19:01We I'm very proud to announce that our physical therapist has been hired full time as an oncology rehabilitation specialist so he is out there doing Prehab and trying to get people ready for their surgery. Once there, diagnosed and all the way to seeing patients. You know long term throughout their rehab needs and then like I said the survivorship echo that we're doing is a national program. We're also launching one lokoli to try to help our own providers.
19:31Get the messaging to patients and meet them where they are in the care centers and beyond.
19:39So, In conclusion survivorship is a huge umbrella and all survivors should have access to prevention management of latent long term effects and opportunities to maximize their health a tailored comprehensive approach is necessary and certainly one size does not fit all, so I will stop here, an I thank you so much for you.