Cancer.Net Podcast

ASCO: You're listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the world's leading professional organization for doctors who care for people with cancer.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so the data described here may change as research progresses.

The ASCO Annual Meeting brings together physicians, researchers, patient advocates, and other health care professionals to discuss the latest in cancer care. The research presented at this meeting frequently leads to treatment advances and new ways to improve the quality of life for people with cancer. In today's podcast, Cancer.Net Associate Editors share their thoughts on the most exciting and practice-changing news to come out of the 2018 ASCO Annual Meeting.

First, Dr. Daniel Mulrooney will discuss a large international study on maintenance chemotherapy for rhabdomyosarcoma, and several studies on the benefits of physical activity for survivors of childhood cancer. Dr. Mulrooney is an Associate Faculty Member in the Division of Cancer Survivorship at St. Jude Children's Research Hospital. He is also the Cancer.Net Associate Editor for Childhood Cancers.

Dr. Mulrooney: This is Dr. Dan Mulrooney from St. Jude Children's Research Hospital. I'm the Deputy Director of the After Completion of Therapy Clinic at St. Jude and primarily care for survivors of pediatric solid tumors. During this year's Annual Meeting of the American Society of Clinical Oncology, a very interesting, large, international study investigating maintenance treatment for rhabdomyosarcoma was highlighted during the plenary session. Maintenance chemotherapy, or prolonged low-dose chemotherapy, is used most frequently in the treatment of acute lymphoblastic leukemia, or ALL, but less so for pediatric solid tumors.

In a study conducted by the European Paediatric Soft Tissue Sarcoma Study Group that included patients from 14 different countries, investigators studied adding maintenance chemotherapy to the treatment of high-risk rhabdomyosarcoma. Rhabdomyosarcoma is a rare tumor, which mostly occurs in children but can also present in adults. Fortunately, treatment is often successful. But up to 20 to 30 percent of patients may still relapse after treatment meaning additional treatment is needed and making long-term cure more difficult. Standard treatment involves 6 to 8 months of intensive chemotherapy, radiation, and surgery. These investigators wanted to know if adding additional low-dose chemotherapy for six months after standard treatment might improve survival. They studied patients greater than 6 months to less than 21 years of age with high-risk disease based on the histology and location of their tumors. 186 patients were randomized to standard therapy. And 185 were randomized to receive the additional 6 months of maintenance chemotherapy, which included vinorelbine given IV, weekly, for 3 weeks every month, and cyclophosphamide taken orally everyday. And at 5 years, the overall survival was statistically better in the maintenance chemotherapy group, 87% versus 74% in the standard therapy group. Fortunately, toxicity from the additional chemotherapy was minimal and mostly included low blood counts, although approximately 30% of patients also had an infectious complication. These investigators concluded that this additional maintenance therapy is an effective and well-tolerated strategy for patients with high-risk rhabdomyosarcoma and proposed to investigate this method in other solid tumor types.

Now additionally, a number of studies presented at the meeting highlighted the importance of physical fitness among childhood cancer survivors. A study from the University of New South Wales in Sydney, Australia collected physical activity data from the parents of childhood cancer survivors and a control population. Fortunately, the parents of survivors reported more physical activity in their children than the control parents with 31% of survivors meeting the recommendations of the American Cancer Society for moderate to vigorous physical activity, which is greater than or equal to 300 minutes of activity per week. However, nearly two-thirds of survivors did not meet the recommended activity level.

Subsequently, a large study from the St. Jude Lifetime Cohort assessed 577 childhood cancer survivors, and 286 healthy community controls. In this study, individuals underwent a series of tests including an echocardiogram and cardiopulmonary exercise testing on a treadmill. Measures of relative peak oxygen uptake or "VO2 max" were obtained to assess exercise capacity. Survivors had a lower VO2 max compared to controls, and this worsened with increasing intensity of previous exposure to cardiotoxic therapies such as anthracyclines and chest radiation. This was also associated with a relatively new measure on echocardiography called global longitudinal strain. In fact, global longitudinal strain, and not the more common measure of ejection fraction, was associated with impaired VO2 max among cancer survivors. Global longitudinal strain may become an important new screening marker for cancer survivors.

And finally, 2 studies from the Childhood Cancer Survivor Study, or CCSS, highlighted the importance of exercise for childhood cancer survivors. The CCSS is a multi-institutional study that uses questionnaires to assess outcomes among a large population of cancer survivors from across North America. Investigators collected data on physical activity, classified as metabolic equivalent tasks, or METs, and expressed as MET-hours per week. Exercise levels were categorized into groups ranging from none or 0 MET-hours per week and increasing incrementally to 3 to 6, 9 to 12, and 15 to 21 MET-hours per week. 3 to 6 MET-hours per week is equivalent to approximately 20 minutes of brisk walking per week, and 15 to 21 MET-hours per week is equivalent to approximately 60 minutes of brisk walking every day for 5 days per week.

And in the first study, investigators showed a decrease in psychological burden among cancer survivors, decreased depression and somatization, and improvements in quality of life and cognitive function among those with increased levels of physical activity. As little as 20 minutes of brisk walking per week was associated with this lower psychological burden. Importantly, in a longitudinal analysis, CCSS investigators showed a decrease in mortality with increasing intensity of physical activity. And looking over eight years, survivors who increased their level of exercise had a 40% reduction in the rate of death compared to those who maintained a low level of exercise. Taken together, these studies presented at the 2018 ASCO Annual Meeting highlight the safety and significant health and psychological benefits of exercise for survivors of childhood cancer.

ASCO: Thank you Dr. Mulrooney.

Next, Dr. Hyman Muss will discuss a study on a tool that can be used to improve communication between older adults with cancer and their doctors. Dr. Muss is a Professor of Medicine at the University Of North Carolina School Of Medicine, and the Director of the Geriatric Oncology Program at the University of North Carolina Lineberger Comprehensive Cancer Center Program. He is also the Cancer.Net Associate Editor for Geriatric Oncology.

Dr. Muss: My name is Hy Muss, and I'm a medical oncologist with a major interest in geriatric oncology. And today I'm going to talk about what I think is 1 of the most exciting studies I've seen in years pertaining to cancer care in older patients, an ASCO presentation by Dr. Supriya Mohile and our colleagues on a large, randomized trial they did, focused on improving communication of older patients with their physician.

So this was a very large PCORI-funded trial in the United States, a federally funded study for patients 70 and older with a whole variety of different cancers. And in this study, what happened were older patients were either randomized to an intervention, which included giving a questionnaire, a geriatric assessment, that asked about function and all types of other issues related to older people, social support etc. And together with that information, there were recommendations for the doctor to talk with the patient about, such as if they had poor social support, maybe get them to a senior facility. Or if they had problems getting meals, set up meals on wheels. Or if they had a physical handicap, get them to physical therapy to try to overcome it. So that was all provided to the doctor.

And the second group of patients just got kind of very little information sent to the doctor. And so what happened in this trial, which was extremely exciting, was that they had 500 patients accrued to this, so this is a huge number of patients. And about half were given the intervention arm and half were just routine care. And it showed that the patients who went through the intervention, and that information was provided to the doctor, had much better communications with the doctor about their illnesses, about their cancer care.

And more importantly, it led to interventions that were very helpful and that probably improved their quality of life and physical well-being, although, these data were not reported in the presentation. And this is really special, because the standard care arm, a lot of things were not discussed, and a lot of things that older patients had may not be related to their cancer but are extremely important for the oncologist to know. And these are things like, "How are you doing at home? Are you able to care for yourself? Do you pay your bills? Do you have good social support? Can you go to the grocery store, etc.? Also, what are your friends like? What are your family like? Do you have people interested in you that take you out, do things?" And frequently, those issues aren't discussed, and they're integral to the care of older people.

So they showed the value of a geriatric assessment, which discovers many more things than the usual questions doctors ask you in 1 or 2 sentences about your function. And more importantly, they improved care, they improved communication, and they led to interventions that make people's lives better, and perhaps, someday a lot longer.

So I thought this was a terrific study. Dr. Mohile and her colleagues broke the glass on showing how important geriatric assessment—where we ask questions about your function, about your health and other things, that are generally not part of a routine history and physical—how important this is to improving care. So I hope you take a look at this at the ASCO site. It's a wonderful trial, and I think it's the beginning of many more similar trials to come. Thank you.

ASCO: Thank you Dr. Muss.

Next, Dr. Michael Thompson will discuss several topics in multiple myeloma that were explored at the 2018 ASCO Annual Meeting, including a discussion on the cost and value of myeloma drugs, a study that compared different doses of a treatment for relapsed refractory multiple myeloma, and several studies that explored ways to personalize myeloma treatment, also known as precision medicine. Dr. Thompson is a hematologist/oncologist, and the Medical Director for the Early-Phase Cancer Research Program and the Oncology Precision Medicine Program at Aurora Health Care in Wisconsin. He is also the Cancer.Net Associate Editor for Multiple Myeloma.

Dr. Thompson: Hello. I'm Mike Thompson, a hematologist/oncologist at Aurora Health Care of Wisconsin. I'm also the Associate Editor for Cancer.Net on myeloma. Today, I'm going to discuss a few myeloma-related areas reported at the ASCO 2018 Annual Meeting. The first is a value debate, which was on Sunday, between Mayo colleagues and friends, Dr. Fonseca and Dr. Rajkumar, who had discussed the question of costs and value in multiple myeloma in this session, Global Myeloma, Health Disparities, and the Cost of Drugs. They disagreed on some issues. But my take-home from their debate was that both the absolute costs of care as well as value, which was utility divided by cost, are important to our entire healthcare system as well as to patients and their families. There was no immediate changes to costs of care after that debate, but I think it's something important that we will all be watching as new drugs are developed in the future.

Another important study was the A.R.R.O.W. study, which was reported on by Dr. Mateos, and was later published with the first author, Dr. Moreau. This was a phase III study of 2 different doses of carfilzomib with dexamethasone in relapsed and refractory myeloma patients. So there was the traditional twice-weekly dose, and there was the once-weekly dose. And the conclusions were that the once-weekly dose with a dose up to 70 milligrams per meter squared improved progression-free survival and overall response rate. And later in the publication, it showed that it improved survival versus the twice-weekly dose at 27 milligrams per meter squared, with a similar side effect profile.

So that is very good news for patients that might get that doublet therapy and have to come into the office less frequently. The caveats with that study are that this dosing was not compared to an intermediate dose of 56 milligrams per meter squared, which has been widely used after that study was published a few years ago. So it's looking at the lowest dose versus the highest dose. And it's also for patients with a performance status of 0 to 1, which means they're doing well. And for many of those patients, we wouldn't use a doublet therapy; we'd use a triplet therapy. So that may limit the applicability in practice, at least, in the United States. And we also don't know that combining this Kd regimen with another myeloma drug is safe or effective, so those studies are ongoing.

And the third topic that was of interest at ASCO 2018 was precision medicine in multiple myeloma. So there were at least 3 parts to this. One is risk stratification. And this has been going on for a while, looking at the cytogenetics and FISH. And the NCCN and Mayo mSMART guidelines give some guidance on how to treat based on risk. Also there was talk about the CAR-T therapies, which may be the most specific or precision type of medicine you can get. And those studies are ongoing but not yet widely available for myeloma, but everyone is very interested in those data. Other therapies were targeted therapies, and there are not as many examples in multiple myeloma as there are in some diseases like lung cancer. But there are some alterations such as BRAF, where BRAF inhibitors are used or can be used in a few patients, in myeloma that have that. And there's great excitement about the BCL-2 inhibitor or venetoclax for t(11;14), which is the most common translocation found in multiple myeloma.

So those are some of the main things I took away from this ASCO meeting. We really need to think about costs and value and the impact it has on our patients. We need to think about trying to dose drugs in ways that are more convenient to patients, and in this case, seemed to be more beneficial. And we have to keep looking ahead to do more things with targeted therapies to see if we can get away from some of the toxicities of some of our chemotherapy agents. Coming up will be more studies over the next year for ASCO 2019, and I look forward to seeing what changes between now and then.

ASCO: Thank you Dr. Thompson.

Finally, Dr. Jyoti Patel will discuss the ongoing research in targeted therapy and precision medicine for lung cancer. Dr. Patel is Professor of Medicine and Director of Thoracic Oncology at the University of Chicago and is the Cancer.Net Associate Editor for lung cancer.

Dr. Patel: Hello. I'm Jyoti Patel. I'm the Director of Thoracic Oncology at the University of Chicago and a long-time ASCO member, and I would like to talk to you today about some of the most important research takeaways from our recent ASCO Annual Meeting. So remember, this is a meeting where about 40,000 cancer care providers come together to discuss and to present the most groundbreaking research and its impact for patients. So this is certainly a meeting that is exciting for all of us and really represents, I think, the best of what's happening in the field.

I think when we look at what's happening with lung cancer—because there's so many people affected with lung cancer in the United States where nearly 200,000 people every year are diagnosed with lung cancer—we can say that we've made significant leaps forward in the past decade, and it's really changed the paradigm in how we treat patients with advanced disease. So it's a disease in which systemic therapy is really the mainstay of therapy because it's not confined to the lung where we may do surgery or radiation, this is really a disease that has spread and is treated as a more chronic condition.

Our efforts at understanding the biology of cancer have really now come back to the bedside, and many of the groundbreaking research trials that were presented really revolved around this idea of personalization of therapy based on biomarkers. Understanding the cancer genome now has a direct impact for our patients. When patients are diagnosed with advanced disease, I think all of these studies point to the fact that we need to have adequate characterization of the tumor. So it's no longer okay to say my patient has non-small cell lung cancer, which is the most common kind of lung cancer, it's really incumbent upon the oncologist, and pathologist, and pulmonologist, and surgeon to come together and further define whether or not there are particular mutations that would serve as good targets for drugs, or whether this is an inflamed tumor and may be best treated with immunotherapy.

When someone's diagnosed with lung cancer, I know it's often difficult for a patient, or family member, to first meet the oncologist and say yes, we have this diagnosis, but I'm waiting for additional tests. But that time that it takes to do this testing—and it's very complex, we look at anywhere from 3, at the very minimum, to almost 1,000 genes at my institution's program—in which we try to match particular drugs with therapies. And the reason we do this is because in about 30 or 40 percent of patients with non-small cell lung cancer that's non-squamous, the most common kind, we're able to find an easily druggable target. So we find EGFR and ALK and ROS1, and so we've got updates on all of those targets at ASCO.

But this year there was really a lot of excitement about a new target called the RET fusion protein and when 2 chromosomes sort of flip-flop and form a protein that causes this cancer to grow. Now this is uncommon, and medically it affects about 1 to 2 percent of patients with lung cancer, but when you look at the enormous burden of lung cancer, that's thousands of patients a year.

What we found was that there's a really selective drug that targets this protein and can shut down the cancer cells and cause deep responses, so almost 80 percent of patients with significant reduction in their tumor and lung responses with an oral tablet that's very well-tolerated. The idea is that we need to absolutely try to do a biopsy, understand if there are multiple markers, and that list continues to grow for which there are druggable targets. And there was a lot of excitement about drugs that target genes such as the MET exon 14 oncogene, or something that's been very elusive for some time, the EGFR exon 20 mutations. These are single sort of base misreads in our DNA that causes cancer to grow, but if 1 patient has this target, and we're able to deliver a drug that causes patients to have nice responses and a return to wellness, I think that's great for all of us.

Often getting the right tissue is tough because sometimes we just don't have enough tissue. And, certainly, we've seen considerable progress with liquid biopsies in recent years, and there's been good concordance between blood-based biopsies as well as tissue, and so our field is rapidly evolving in ways that we can bring the best drugs to the best patients.

We're starting to do this with immunotherapy. There's a protein called PD-L1 which helps us assign appropriate therapy for patients. And so if someone has a high PD-L marker on their tumor, those patients may get immunotherapy alone with an expectation that they would have a nice response and durable disease control with good quality-of-life. So with effort to really characterize tumors, although it can be difficult when someone's first diagnosed to wait to get all these markers right, which is on the order of about 2 to 3 weeks, the downstream effects of characterizing the tissue and getting the right drugs to the right patients are really enormous because we are able to see patients that return to wellness.

Certainly this was an exciting meeting. And I think more and more we're seeing not only medical oncologists, but patients and patient advocates, understanding the importance of biopsies, and an incredible effort by industry, as well, to really make these assays and these tests more accessible to patients, and to make the turnaround times even faster, and to use less tissue to get the right answers. I'm optimistic that we'll continue to see this trend, and there will be more and more drugs that will be optimized for particular patients.

ASCO: Thank you Dr. Patel. If this podcast was useful, please take a minute to subscribe, rate, and review the show on Apple Podcasts or Google Play.

To learn more about all of the science presented at the 2018 ASCO Annual Meeting, visit www.cancer.net/ascoannualmeeting. If you have questions about whether new research may affect your care, be sure to talk with your doctor.

Cancer.Net is supported by ASCO's Conquer Cancer Foundation, which funds breakthrough research for every type of cancer, helping patients everywhere. To help fund Cancer.Net and programs like it, donate at conquer.org/support.

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ASCO: You're listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the world's leading professional organization for doctors who care for people with cancer.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so the data described here may change as research progresses.

In today's podcast, Dr. Timothy Gilligan and Liz Salmi will discuss their article "Patient-Clinician Communication Is a Joint Creation: Working Together Toward Well-Being," from the 2018 ASCO Educational Book. They cover several ways people with cancer and members of their health care team can work together in order to improve their communication, including a study on sharing clinical notes with patients, a recent guideline from ASCO on physician-patient communication, ways to address religion and spirituality, and tips for patients.

Dr. Gilligan is an Associate Professor and Medical Oncologist at the Cleveland Clinic Taussig Cancer Center. Ms. Salmi is a brain tumor survivor, and Senior Strategist in Outreach and Communications for OpenNotes.

Published annually, the Educational Book is a collection of articles written by ASCO Annual Meeting speakers and oncology experts. Each volume highlights the most compelling research and developments across the multidisciplinary fields of oncology.

ASCO would like to thank Dr. Gilligan and Ms. Salmi for discussing this topic.

Dr. Gilligan: Hello, my name is Dr. Timothy Gilligan from the Cleveland Clinic. I'm joined today by Liz Salmi of OpenNotes and the Beth Israel Deaconess Medical Center. In this podcast, we will be sharing some key points from our 2018 ASCO Educational Book article titled "Patient-Clinician Communication Is a Joint Creation: Working Together Toward Well-Being." I would also note that Dr. Andrea Enzinger from Dana-Farber was an author on that.

So, Liz, we were going to start with talking about your piece on this, your work with OpenNotes. And for those who haven't heard of this, the idea is making progress notes openly available to patients so they can read the progress notes about their medical care. Can you talk a little bit more about what OpenNotes is and what's at stake here?

Liz Salmi: Sure. Absolutely. Thanks for that intro. And I just want to say my role at OpenNotes—I do outreach and communication work, but, also, I think it's important for the audience to know that I am also a patient. I'm a person living with a malignant brain tumor or brain cancer. And I'm now a 10-year survivor, but I'm still living with active disease. So what I'm talking about today is not just part of my job, but it's also very personal to me. And so what you just kind of gave me a lead-in on, is explaining what OpenNotes is, but I do want to repeat a little bit about that. So OpenNotes is now a national movement that stems from real medical research, and it's a movement dedicated to making healthcare more open and transparent by giving people—or patients—access to their doctors' notes via existing secure online patient portals.

And when I say that, I want to make it clear that OpenNotes is not a product, or it's not a piece of software. It's more of just a concept of let's give patients full access to their medical records. And when we talk about OpenNotes, a lot of patients will say, "Well, what is a doctor's note?" Right now, I, as a person, can login to my digital online portal to email with my doctor, or, say, set up appointments, or order prescription refills. And sometimes, after a visit I can see a visit summary of a little bit of what transpired at my visit with my doctor. But what I don't see is my clinical notes.

Now, clinical notes, a lot of people and patients don't realize that after every clinical visit with a doctor, they go back to their office and write up these really detailed notes of everything that transpired during the visit. But most patients, about 93% of the US population, don't have access to this information. And it's a bummer because that information is so detailed. And as a person living with cancer, I'm kind of dealing with something that's emotional and overwhelming, and most people can't remember everything that their doctor says. And most doctors keep track of all of this in their clinical notes.

And OpenNotes, as a research project, was looking into what would happen if we gave people or patients easy access to those clinical notes that the doctors write. Would they understand those notes? Would they get some sort of benefit or value out of it? What would doctors think about that? And so I want to talk about what that original study is, and I'll hopefully try to do it quickly. But OpenNotes started as this research project. It was conducted in 2010, the first project, and it has now been replicated at multiple sites around the country. The original research was done with over 100 primary care doctors and 20,000 patients. And we tested this concept of sharing notes at 3 sites, at the Beth Israel Deaconess Medical Center in Boston, at Geisinger Health in Pennsylvania, and at Harborview Medical Center in Seattle.

And at the beginning of the project, they asked all the clinicians who'd be sharing their notes, "What do you think's going to happen?" And the doctors thought, "Gosh, we write these notes at such a high level because it's a communications tool with our other colleagues. And we don't think our patients are going to really understand what we're writing. And we're also concerned that patients might be afraid of what they read because there's all kinds of stuff we capture in there." And they also surveyed those patients. Before they received their notes, they surveyed them and said, "What do you think's going to happen? You're going to now read your notes for the next year. What do you think?" And patients, even people like me, were like, "I don't know what to expect. I've never seen this type of information before."

So fast-forward to a year later, and what they found was that during that year about 80% of patients read a note, and 75% of patients reported benefits. They felt like, "Wow, if I can read my doctor's notes, I feel more engaged in my care. I better understand why certain medications were prescribed to me. I felt like I had more control over my care." Sharing the notes improved the doctor-patient relationship. 99% of patients felt better or the same after reading just one of their doctor's notes. They felt they could trust their doctors more. And, just like regular people, sometimes doctors make mistakes. And sometimes those mistakes would transfer to their clinical notes, and patients, when they're reading those notes, were able to point out errors. For example, the doctor might write, "There's a problem with your left knee." And the patient will say, "Actually, I was talking about my right knee." So there was this opportunity for a little bit of quality control.

Dr. Gilligan: Well, thank you. So you've outlined, obviously, some of the benefits to patients in terms of direct access to information, the opportunity to correct mistakes, the chance to feel more empowered. I'm curious. Often, we hear from clinicians fears that this is going to generate a lot more phone calls or problems, or patients will get upset. Can you talk just a little bit more about what the research has shown in terms of what has actually happened when this has been turned on, so to speak?

Liz Salmi: Absolutely. So we've learned a lot. They're concerned that by sharing their notes, it's going to increase that doctor or other clinician's workflow, meaning if a patient reads a note and anything about it is unclear, or maybe there's a word and phrase they don't know, it's going to trigger an email or a phone call back to the doctor. So mainly, the concern is workflow. And we've seen—and it continues to show—that workflow does not increase. W

hy is that? Well, often, a patient will go to a visit, leave that doctor's visit, and then later go, "Oh, my gosh. I can't remember what my doctor said." If they don't have access to their notes, that triggers an email or maybe a phone call saying, "Oh, hey, Doc. I can't remember. Did you tell me to do this or that?" or, "How many times am I supposed to take this medication?" or, "How many exercises do I need to do each week?" or, "What was that thing you said?" With OpenNotes, patients can actually go back to the doctor's notes, the exact record of that interaction, and refer to the note itself. So that decreases the need for another email or another phone call.

Occasionally, a patient might read a note and have a question that the note triggers. So then they might follow up with a question through email or a phone call. So the 2 kind of cancel each other out, and, overall, you don't see an increase in workflow.

Also, they're worries that most doctors have in advance of sharing notes. "Oh, my gosh. I think my patient is going to read what I write, and they're going to get stressed out by it." But that never happens. And what is written in a medical record and in a note is what the doctor actually says to the patient. So there shouldn't be any new information, necessarily, in the note. An interesting thing to think about is that after that original study, all the doctors who shared their notes after that entire year were allowed to stop sharing their notes, but not a single 1 did. They were like, "Oh. This is working out for me. My patients seem to like it. So I'll keep going."

Dr. Gilligan: So I want to use that as a segue because we have two other subjects we need to cover in this podcast. Both in the article and in the session we did, we talked about the new ASCO patient-clinician communication guidelines, the first guideline that's been published. And that was published late 2017.

The guideline was broken down into 9 key areas that we thought were important. One was just core communication skills. How do you have the conversation in a better way?

One thing that's often unappreciated is that a lot of Americans have low health literacy. They have low numeracy. If we say to a patient, "There's a 30% chance of this or that," that may sound very obvious to us what it means, but it often is misinterpreted. And even lay persons, what we might consider average or normal numeracy or literacy, don't take in the numbers they get from healthcare professionals as fluently as they think they do, and there are better and worse ways that have been studied of doing that, and we talk about that.

Cost of care is a new issue. Bankruptcy from healthcare is a large problem in this country. There's a lot of unaffordable drugs out there, so how to talk about that is an issue that comes up in it.

Underserved population is a concern that we address, whether it's racial or ethnic minorities or other underserved populations. The LGBT community and their healthcare needs is increasingly recognized, and ways in which they encounter challenges in the healthcare setting a problem, so we talk about that.

And then lastly, the issue of how do we train people to get better? There's been a lot of research in how people improve in communication, and I think the big take home from that is that communication is a motor skill. It's like learning how to play a sport or a musical instrument, and the way people get better at it is by practicing it and then getting feedback so that they can improve.

And then the last piece that I really wanted to get your thoughts about was how do we talk about spirituality for patients with patients? We know that from studies of patients and surveys that the majority of patients think spirituality, whether or not that's formal religion, but spirituality in general, is important to them in coping with serious illness, and yet it's something that many providers feel unprepared or unskilled at in terms of bringing up. So in a sense, this links in with the former topic of key communication skills. I'm curious your thoughts, as a patient, what you think about the issue of spirituality and how it can be helpful to patients going through a difficult time.

Liz Salmi: Yeah, no, absolutely. And thanks for clarifying. There's formal religion and then there's just kind of general spirituality, kind of a vague aspect or a way of looking at things. And, I think, as a person who-- I don't attend church, but I do think about how I view my place in the world and as that relates to my cancer experience is they kind of go hand-in-hand.

And when I was first diagnosed, realized I had a brain tumor, and then I had a brain surgery, and I'm laying in the hospital 24 hours later, and a chaplain walked into the room and introduced himself and said, "Hey, I'm the hospital chaplain. And I just want to let you know that I'm here to talk to you." They are basically offering their support. But as a new patient and someone who's never been in the hospital before, I had no idea what the role of the chaplain was. And I told the person. I was like, "Yeah, I don't want to talk to you right now. What are you doing here?"

And they also scared me. The presence of a chaplain, I had only seen from TV that if a religious person came into a hospital room it meant somebody was dying. And I was like, "I just had brain surgery 24 hours ago. They're sending in a religious person to see me. Does that mean I'm dying?" So it freaked me out, and I told the person, "No, I don't want to see you. Please leave." And then when the nurse came in to check on me, I said, "What was that all about?" and the nurse says, "Oh, if you don't want a chaplain to come see you, I can make a note to not have them come see you again." I said, "Yeah, please do that."

So, actually, in my medical record, someone made a note in my inpatient notes, "Patient refuses chaplaincy services." And it wasn't until 2 years ago, so like 8 years after diagnosis and that first brain surgery that I learned a chaplain is non-denominational. They're there just talking about psychosocial, spiritual issues, that it has nothing to do with a particular religion at all. They're just there to help. And I think it's a bummer and a disservice that I didn't find out until eight years later when, really, I probably could have benefited from having someone to talk to from that perspective.

Dr. Gilligan: I think the promise here is that if we feel confident that we have the tools to do this, and we know how to have the conversations, and then we start having them, we'll be taking better care of our patients because they're telling us in surveys over and over again that this is important to them, and it would help them if they could talk about it. But it has to be done in a skilled way. And as your story, Liz, tells, if it's not done that way, then it can be unhelpful. It reminds me of Rana Awdish in her book In Shock talks about story where she wakes up in the ICU, and she's getting last rites. And that's not really the way you want to be introduced to a priest [laughter].

Liz Salmi: No way. That's wild.

Dr. Gilligan: It was kind of shocking to her at the time. Obviously, she survived to write about it, thank God.

Liz Salmi: Well, you talk about these communication guidelines, which are for doctors to help them better understand how to communicate well with patients, but I was just curious if you have a couple tips for the listeners who, mainly, are patients for this podcast. What can patients do to help ensure smooth communication with our healthcare team? Do you have any tips for us if we want to kind of take control of situation a little bit?

Dr. Gilligan: Yeah, no, that's a great question. So 1 of the things I find interesting about that is that in the early research on the impact of communication on patient medical outcomes, it was documented very early that outcomes in managing high blood pressure, managing diabetes, other hard medical outcomes, not the more patient-satisfaction, softer stuff-- that hard outcomes improved if you either taught clinicians to communicate better or taught patients to communicate better. Either one has a positive impact on healthcare, so it's very appropriate to ask. The reason we focus on training clinicians is there are many fewer clinicians than there are patients out there. Training all the patients in the world would be a lot of people to train.

I think the most important thing is to come organized, to have it very clear what your priorities are, and what you're hoping to accomplish, and to try to lay that out early in the appointment. And it's helpful for us clinicians to know, but it's also helpful to advocate for yourself if you come in with a clear sense of what your goals are and what you're hoping to get out of the encounter.

I think the other thing I would say is it's really helpful to bring someone with you. I think if I'm ever in the hospital, I would want a family member there. And if I ever have a family member in the hospital, I'm going to be there, too, because in the modern healthcare system you need to advocate for yourself. And so I think being prepared and organized is one way you can advocate for yourself. Bringing someone with you can help, as well.

The last thing I would say is the model of communication skills that we teach is really built around building stronger relationships between clinicians and patients. And I think that, on both sides, it's a 2-way street, that relationship. If we both pay attention to the fact that we will work together much more effectively if we have a strong relationship, then we can try to communicate with each other in a way that helps build that up.

Illness is stressful. People get upset. They get angry, and all that is natural. But the more we can remember that, in the end, we're on the same team, we're kind of rolling the same direction. I usually find myself saying this to clinicians to try to avoid getting into unnecessary conflict with patients. But I think also, too, on the patient side. So those would be the 3 things I would really think about: being organized, bringing a family member with you when possible—I realize it's not always possible—and then paying attention to the nature of the relationship and attending to the relationship, not just the work that you're trying to get done. There's certainly more I could say, but it's a big subject.

Liz Salmi: Yeah, no, absolutely. And thank you for that. It was really helpful. I know, from an OpenNotes perspective, we often realize that access to information also helps ensure smooth communication. And when doctors and patients are on the same page and able to look at some of the same information, a patient's level of understanding increases. And it helps us make better decisions overall.

Dr. Gilligan: I agree, 1 of the things I like about giving patients more access to information is 1 of the things I, in a sense, challenge patients to do is to take more ownership over their own care. They should know what medications they're on, and they should know why they're on them, and they should know why they take them. I don't say that in a critical sense, but just if it's me, and someone has me on medication, I want to know why, and I want to know which drugs I'm taking. And keeping track of that, I think, taking more ownership over that, and really knowing your medical history to the best extent that you can helps you get better care in our system.

Liz Salmi: Yeah. Absolutely. High five on that one.

Dr. Gilligan: Well, it's been great talking to you again, and--

Liz Salmi: Same. Yeah, and thank you. It was a pleasure to get to write this article with you in the ASCO Educational Book, which, I believe, anyone can read at ASCO.org/edbook.

Dr. Gilligan: That's right. That's right. So look it up, take a look. We hope that you enjoy it. Thank you for listening to our podcast.

ASCO: Thank you Dr. Gilligan and Ms. Salmi. Please visit ASCO.org/edbook to read the full article. And if this podcast was useful, please take a minute to subscribe, rate, and review the show on Apple Podcasts or Google Play.

Cancer.Net is supported by ASCO's Conquer Cancer Foundation, which funds breakthrough research for every type of cancer, helping patients everywhere. To help fund Cancer.Net and programs like it, donate at conquer.org/support.

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The ASCO Annual Meeting brings together physicians, researchers, patient advocates, and other health care professionals to discuss the latest in cancer care. The research presented at this meeting frequently leads to treatment advances and new ways to improve the quality of life for people with cancer. In today's podcast, Cancer.Net Associate Editors share their thoughts on the most exciting and practice-changing news to come out of the 2018 ASCO Annual Meeting.

This podcast features an interview with Martha "Meg" Gaines, Distinguished Clinical Professor of Law at the University of Wisconsin-Madison and Director of the Center for Patient Partnerships. She shares her personal experience with cancer and explains how it led her to advocate for others with cancer and found the Center for Patient Partnerships. She also discusses patient-centered care, and shares tips for patient advocates.

The ASCO Annual Meeting brings together physicians, researchers, patient advocates, and other health care professionals to discuss the latest in cancer care. The research presented at this meeting frequently leads to treatment advances and new ways to improve the quality of life for people with cancer. In today's podcast, Cancer.Net Associate Editors share their thoughts on the most exiting and practice-changing news to come out of the 2018 ASCO Annual Meeting.

Approximately 70% of people diagnosed with cancer are 65 or older, and often older adults with cancer have different needs and concerns than young adults or children. In this podcast, we will discuss new recommendations from ASCO about how doctors can assess older adults in order to ensure they get the care they need.

This podcast will be led by Dr. Arti Hurria and Dr. William Dale, two co-chairs of the expert panel that produced these recommendations.

In this podcast, Dr. Paul Celano discusses what patients should know when taking medication for cancer treatment, including tips for safely storing the medication, special considerations for oral chemotherapy and opioids, as well as resources to help dispose of unneeded or expired medications.

In this podcast, Professor Nicholas Turner discusses liquid biopsy, which is a procedure that uses blood to test for cancer in the body.

Treatment for head and neck cancer can often cause side effects that make it difficult to eat. In this podcast, dietitians Maureen Gardner and Annette Goldberg discuss several side effects that may be caused by head and neck cancer treatment and offer tips for managing these side effects and taking in enough nutrients, including information about feeding tubes.

In this podcast, Dr. Timothy Gilligan will discuss new research presented at the 2018 Cancer Survivorship Symposium: Advancing Care and Research, held February 16-17 in Orlando, Florida. This multidisciplinary meeting brings together primary care physicians, oncologists, patient advocates, and others to discuss ways to address cancer survivors' unique concerns.

The research discussed in this podcast includes mention of suicide. If you need help, contact the National Suicide Prevention Lifeline.