Welcome back to an Introduction to Breast Cancer. I'm Dr. Anees Chagpar. I am so excited that you chose to join us today, because today we have one of our expert interviews with Dr. Tara Santh. Dr. Santh is the director of the survivorship clinic here at Yale. She's also a breast medical oncologist and also has specialization in palliative care. So we're going to talk to her about some of our survivorship issues. So, let's get started. Thank you so much [CROSSTALK] for joining me. >> This is very fun. >> So, Ty, in our course, we talked a little bit about the survivorship period. >> Yeah. >> Can you define when somebody becomes a survivor? >> Sure. So, technically, survivorship starts at diagnosis. And that means that anybody who's had a history of cancer is a survivor regardless of what happens to them down the road. But for our purposes we sort of define survivorship as starting after acute treatment ends. So that could mean after surgery, after surgery and radiation, or surgery, chemotherapy, radiation and endocrine therapy. So for every patient, it's a little bit different. Once the patient's on surveillance, they're considered in the survivorship phase of their treatment. >> And that's that phase where they get this lost in transition element. Talk a little bit about that. >> Exactly. So this is a phenomenon that has been well described for many decades, but was more recently paid attention to, once we got a really good handle on treating the cancer. And I would say, just in the past ten years or so, we've really made a lot of progress at identifying this as a gap. So what that lost in transition is describing is, that between that time when the treatment ends and a patient is released, [LAUGH] from really active monitoring and said, congratulations, you're all done, we'll see you in six months, or we'll see you in three months, or we'll see you in a year sometimes. And the patient thinks, I'm falling off the cliff, I got to the top, I finished my treatment, and now what? I don't have a road map, I feel like I could fall over, and the cliff, and fall through the cracks. So survivorship, that movement, is really trying to give patients information. Address their unique, but very common fears and concerns. And recognize that it's a separate entity, from before they were diagnosed, from their treatment, and a new normal is what they're expecting going forward. >> So tell us a little bit about some of the concerns that patients come to you with. In that survivorship period as they're trying to adjust to new normal, what are their top concerns? And what pieces of advice do you give them, to kind of address those concerns? >> So, everybody is a little bit different but we see many common themes in the survivorship clinic. And it spans gender, diagnosis, age and experience. Almost every patient has a fear of recurrence. And it doesn't matter if you had noninvasive, stage zero breast cancer or stage three high risk breast cancer. Everybody has that in the back of their head It could come back. So you spend a lot of time normalizing that and giving patients strategy to cope with that. >> Like what? >> It has a lot to do with reframing your thoughts about fear. Fear is something that hasn't happened yet. It's an irrational thought about something that could happen in the future. So there is a lot of techniques about sort of staying in the moment and recognizing that fear for what it is and letting it go. It's not easy [LAUGH] It takes some practice and there's cognitive behavioral therapy that our clinic specializes in through our social worker. And sometimes patients have to practice at this for a very long time with extended therapy. >> So, kind of that mindfulness of, Okay, I understand that this is a fear. It's real. But I've done what I can do to manage that fear and. >> And today, there's no reason to think that I have cancer. >> Right. >> And I'll say that having taken care of patients who are five years and out in my long term survivorship clinic, that fear does subside. >> Terrific. >> Yeah. >> What are the other concerns that patients come to you with? >> So the other common themes have to do with side effects of treatment. So, in particular with breast cancer, patients gain weight. It's very common. And so, this is stressing, and it's something that patients come saying help me, I need help. And they may have developed fears about food. Did the food I eat give me cancer? If I eat something, will it cause my cancer to come back? So we spend a lot of time tackling issues regarding weight, appearance and fears and myths about food. Other concerns have to do with fatigue related to treatment and getting back to or trying to start and exercise regimen. Cancer's a teachable moment, so we all know what we need to be doing to be healthy. But sometimes having that diagnosis is the motivator to change everything that you've done so far. >> Yeah. And you've done a lot of research on diet and exercise. So, tell us a little, and tell our learners a little about, kind of what those things are that people should be doing in that survivorship period, when they do have concerns about what do I eat and how much exercise should I be getting and how do I lose all of these pounds that I've gained? >> So we do have very strong recommendations from the American Cancer Society and the World Health Organization that patients should be eating a plant-based diet. That's not a new recommendation. It gets a lot of attention every few years when something some new research comes out about various foods that we eat. But a plant based diet is the most healthy way to stay in a healthful mode. Patients should be exercising at least 150 minutes per week. And those are the two governing guidelines that we try to stick to. Now, how you do that depends on who you are. So, in our research we've used sort of a lifestyle intervention to help patients not think of it as diet but as making healthy choices and changing their weight and their physical abilities through that. But other programs that have been quite successful include weight loss programs like Weight Watchers which is a portion control. Check and balance sort of a system. Exercise can come in many different forms. And what we do in the clinic is take the patient's preferences and abilities in what they're able to do and try to make a realistic exercise program for them. >> So we've talked a little about fear of recurrence, about food and diet. We've talked a little about exercise. Are there other concerns that patients have in that survivorship period that are unique to them? >> Yeah, I think we see a lot of patients. When you ask you realize that a lot of patients have intimacy and sexual side effects. And I think it's been a struggle to address these throughout the decades, and we're finally starting to feel more comfortable, and patients are becoming more comfortable mentioning these things to their doctors. It's becoming more of an open issue. And so in our breast population, almost every woman reports some intimacy or sexual dissatisfaction. We don't always have the best answers, to, let's say, reverse a low libido. Right. But there are other really simple things that women can do that they won't know about unless we talk about it. >> Like what? >> So for instance for vaginal dryness, there are over the counter moisturizers and more sort of natural feeling lubricants. Such as Replens and Astroglide that are very easy to purchase. You don't need a prescription, you can just go and buy them over the counter. And women don't know about it until they start to talk about it. Other things are uses of oils at home as a lubricant for when you're intimate with your partner. And sometimes patients need dialator therapy to help with scarring after treatments if they've had some other type of cancer that might be related to their breast cancer. >> What about, do you find that related to that, another issue is body image and how you relate to your partner and what do you advise patients with regards to that? >> So that's difficult, but we do see that in some patients that they didn't realize the loss of their breast was going to be such an issue for them and body image and not feeling like they want to, that they are attractive it would plays into all of that I think that the strategies are multi-factorial, and some of it has to do with recognizing that there are other ways to get pleasure. So, if you have no more sensation in your breasts there are other places that may be sensitive that you could work on with your partner to derive pleasure from that. And some of it requires more radical things like reconstruction surgery. >> So I think all of these are really important things for patients to talk about with their doctors in that survivorship period. Another thing that we talked about a little bit in our lectures was this whole concept of the road map that you were talking about. Tell us a little more about survivorship care plans. What should be in a survivorship care plan? What should patients be asking their doctors when they get that survivorship care plan? And how should physicians in healthcare facilities be administering these? >> So, a survivorship care plan is a document. And it's meant to be a tool for these kinds of conversations. So the general consensus is that this document should contain information about four things. Number one is the information about your treatment. So your actual details of diagnosis, your stage and all of the things that were done to you including the names of the chemotherapy, the radiation that you had, the type of surgery. And the dates associated with those things. The second is a list of potential late and long term side effects. Now not every patient wants that kind of information, so I think it's important for providers to assess how much a patient wants to know. But in general, there are a few red flag symptoms that every patient should know about that would require an evaluation. Things like unintentional weight loss for instance, or persistent fevers and chills. The third thing is a surveillance schedule. So, how often are you going to see me? And for how long? Is it always going to be for three months, or is it eventually going to space out? Do I need a mammogram every year, or every two years are you going to be scanning my whole body, and if not, why? And again that is more of a conversation even than what is living in that document. And the last is a list of resources for other issues that the health team can't always tackle, things like. Psychosocial support. I want to talk to other survivors. I'm having financial issues. What about my kids? My career is taking a hit. And for every problem there is a resource and we are obligated as the medical community to let those patients know that there's help out there. >> Yeah, and it's important for patients also to engage in that conversation and let doctors know because sometimes that information isn't always forthcoming. >> If we don't ask and the patient doesn't tell us it will never be talked about. [LAUGH] >> Right. >> And I think that the way to give these survivorship care plans is still A work in progress I would say. So part of what I like to do is to think about, what is the gold standard of survivorship care? And I think we're realizing one size does not fit all. >> Mm-hm. >> So however a patient gets that information, it has to be in a trusting environment with some healthcare provider, some member who understands what's happened to that patient and can give them. Accurate and verified information. >> Right and so I guess different facilities is going to try the maneuver their way to try to find that perfect system. >> That's exactly right. >> Yeah. >> So these documents have been required of us. And with very little guidance on how exactly this should be done. To me, I see that as an opportunity. >> Yeah. >> And a challenge, but a fun one, to think about what does each individual need, how much attention do they want? And what's the best way to make sure that they're concerns our address. >> Right. And so, the survival should period sometimes sadly, ends up meeting with end of life issues and this concept of palliative care so you've got both, you've got multiple hats, but one hat is survivorship and one hat is palliative care. Now, some people have the preconceived notion that palliative care equals hospice. >> Right. >> Can you talk about whether that's true and when palliative care comes in to the whole picture? >> Yeah, my fellowship in palliative care was in conjunction with my fellowship in oncology and it was a very nice marriage. Because as positive of an outcome that most survivors have, there are women who recur. And as good as they can do for some period of time, eventually they can succumb to their disease. Palliative care, there's always a role for palliative care depending on what's going on with the person. So, in my field, in survivorship, it's fit in nicely in terms of addressing symptom management and also communicating about these fears and these hopes. And sometimes they are just as strong in the survivorship phase, as they are at the end of life. The truth is, when somebody learns at a recurrence, it's a terminal illness by definition at this point, for the most part. And there is a role for addressing those things at that moment. Now the women could do well and live for many years, she could be without evidence of disease from indefinitely which is what we all want for our patients. But for the patient who doesn't respond to the therapies and their disease continues to grow, I think having a palliative care involvement early with symptom management will help them live their time with quality. So hospice itself is a program when treatments aren't working. >> Mm-hm. >> Patients who are doing well and feeling good, they want treatments and there's usually something to offer them. When they're ill from their disease and nothing that's tried is working anymore, hospice is an amazing program that allows the patient to avoid painful suffering and long visits in a hospital stay. And most patients when you ask them, they would rather be at home. And they want to be around their family. And this is a program that allows them to do that. >> So if I understand you correctly, palliative care is more than just at the end of life. >> That's right. >> It is symptom management, communication, addressing fears. Which can then also play a role at the end of life, but not exclusively. >> Yeah, so if you think of it, there's a nice diagram I think of in my head, of a rectangle, with a diagonal line across. [LAUGH] >> I think some of our learners have seen this diagram. >> Okay, so at the beginning of a metastatic diagnosis, for instance, the treatment box, which is the triangle let's say, on the top, Is the heavy one. And the palliative care box, which is the bottom triangle, it's present. But you might not need it because you're feeling pretty good. And as treatments go on, that top box gets more narrow towards the end of the triangle. Where in the palliative care needs it become greater. And when you're at the end, it's almost all palliative care. And that's where hospice really fits in. So I would call palliative care the umbrella. And hospice has spoke. >> Yeah. So, this has been really fabulous, because we've kind of taken a journey through all of the needs of breast cancer survivors, from the time that they have finished their treatment and they're feeling great, but they may have fears of recurrence and weight gain, and what do they do right until end of life. Since this is your area of expertise, what do you think is on the horizon for survivorship and palliative care? >> So, you know Anees, I think we still need to do a lot of work in defining the gold standard care, and the gold standard approach, to both survivors and patients at their, at the end of their life. I think that, if we're smart, we will individualize this to a patient's preferences. And we'll hone in on not only those at the highest risk for recurrence but those with the highest fear levels and those with the highest anxiety levels and the most psychosocial needs and demands. And, that will be some percentage of the population, many patients will do just fine. And similarly at the end of life, I think, and in metastatic disease we will need to individualize our approach early and reassess often, and I think that defining that individualized, sort of gold standard approach, is what we will do here at and I think its very exciting and a privilege to be a part of the journey. >> Wonderful, well, thank you so much for joining me. >> Well, thanks for having me. Been a lot of fun.
