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Kathryn J. Ruddy, MD: Hello, I'm Dr Kathryn Ruddy. Welcome to season three of the Medscape InDiscussion Cancer Survivorship podcast series. Today, we'll discuss the importance of support groups and other ways to support cancer survivors to enhance symptom management and connectedness.
First, let me introduce my guest, Dr Shanda Blackmon. Dr Blackmon is renowned in the field of thoracic surgery and is now the executive director of Baylor College of Medicine Lung Institute. Previously, during her decade as a leader in the surgical treatment of esophageal cancer at Mayo Clinic, she published a book with Mayo Clinic Press entitled The Support Group: Connection, Hope, and Healing for Patients + Providers. Dr Blackmon, welcome to the Medscape InDiscussion Cancer Survivorship Podcast.
Shanda Blackmon, MD, MPH: Thank you, Dr Ruddy. It's an honor and a privilege to be here. I've been looking forward to this podcast for some time.
Ruddy: Let's start with you telling our audience about some of the physical and psychological issues that patients face as a result of surgery for esophageal or lung cancer and how participating in a support group might help improve their quality of life.
Blackmon: I'm so glad that you brought that up. Patients who have undergone treatment for esophageal cancer or lung cancer surgery are increasingly becoming candidates for surgery. In some cases, patients who we used to not think about being candidates are now candidates because of the new immunotherapy regimens and targeted therapy regimens. And so, when we think about these cancers — two of the deadliest cancers we see — we think about patients going through some type of chemotherapy, radiation therapy, a combination of therapies, and then also surgery, and ending up in a place after this treatment where they have severe symptoms.
Some of those symptoms might be related to the lung cancer surgery they had, where they have dyspnea, which is also shortness of breath, where they have fatigue, or they become frail and weakened. Or they have significant pain. We know that minimally invasive surgery sometimes protects patients from having a tremendous amount of pain; but nonetheless, after these interventions, they can develop some significant pain and inflammation and then some side effects from those chemotherapy drugs that are given to them.
I think esophageal cancer patients present with some of the worst combinations of symptoms, which is what led me to focus most of my research in this area. They can have the same symptoms as lung cancer patients, like emotional or psychological health problems. They can have anxiety and depression, physical health decline, or they can also present with specific problems related to their esophagus, or even people who've had any kind of upper digestive disease cancer, like trouble swallowing, trouble maintaining their weight, problems with rapid transit through the bowel, problems with heartburn or regurgitation of food. Specifically, some of those problems related to pain can cause problems with isolation and not feeling connected to their community. Those problems extend not just to the patient, but to the caregivers as well. Unfortunately, the surgeons who perform a lot of these surgeries don't fully understand how to follow those patients longitudinally and help their symptoms get better. Unfortunately, some of the other caregivers who care for these patients may not be experts in managing these symptoms either. So we've really focused on the benefit of support groups to try to help these people maintain best quality of life after their cancer intervention.
Ruddy: When you're talking about support groups, do you have any thoughts about the relative benefits of an in-person support group versus a virtual support group to obtain these benefits? And how are you running your support groups now?
Blackmon: I think that's one of the best questions, and if you'd asked me before COVID, I would say we have to do these groups in person because of the interpersonal dynamic that we were seeing when we were running these support groups, whether it was for providers or for patients. For 8 years, I ran an in-person support group in Houston, Texas, and we stayed very close — all of us, the providers and the patients and the caregivers — throughout that 8 years. One of my favorite things that we did was we would have a survivorship party once someone survived to 5 years from one of these deadly cancers.
But when COVID came along, we noticed that having these virtually gave more people a chance to be a part of something and opened up the aperture on having impact on a bigger population. So to answer your last question, I do think it can be in-person or virtual. Now I think the virtual one might be the best way because it's the most convenient and it gives the [largest] number of people the ability to participate. Today I'm running a thoracic surgeon, female support group to help women who choose to enter the field of cardiothoracic surgery to be supported through their career. I participate in support groups for esophageal cancer patients. Most of those are virtual. One is run by a survivor from New York who had surgery originally at Memorial Sloan Kettering and is more than 30 years out from his cancer. Another one is run by a survivor out of Florida. I do think that the survivor running the support group is great, but I also think it's so important to have physicians monitoring so that the advice that's given and the recommendations and the knowledge that's shared is scientifically based and a lot of people aren't making up home-based therapies that might cause harm.
Ruddy: That makes perfect sense. When you're talking to your patients about the value of support groups, do you find that some express concerns about participating due to stigma around mental health or stoicism? Is that something that you hear often?
Blackmon: I used to hear that quite a bit. One of the things that has been the best part about running support groups is once they get the courage to go to the first group, patients realize that there is confidentiality around the discussions that take place. They slowly open up over time. Some people are ready to talk that first meeting. Others might take four or five support groups before they're ready to open up and share. I've had a few patients who took almost a year to really start sharing, and it was their caregiver that kept encouraging them to attend and open up. Everyone's on a different trajectory, but I think the attendance, sometimes even just sitting there and listening to others, helps these survivors to not feel so alone and helps them to identify problems and helps them to feel less stigmatized because they see other people having similar problems and they get to see how they deal with them.
Ruddy: In addition to symptom management and encouraging patients and survivors to share tips with each other, are there other topics like family relationships or other issues that you encourage support group participants to discuss?
Blackmon: Yes, and in fact, I think caregivers should attend support groups either with the people that they're caring for or on their own, because it is a very isolating thing to care for someone who has cancer. It can cause a lot of fatigue, psychological and emotional distress. A lot of people who care for patients with relatively uncommon deadly diseases are frequently frustrated because there are not enough resources to help them know what to do. They end up trying to solve problems on the fly without a lot of resources, and they find that knowing what to do in particular situations can sometimes be so overwhelming that it fractures the relationship.
Engaging in a support group is a bit of a pop off valve. It helps the caregivers to support one another and the patients to support one another. From a provider standpoint, being part of a support group, I think it makes me a better surgeon watching that longitudinal patient go through their journey and seeing the long-term impact of the surgeries that I perform on these patients, whether it's good or bad. A lot of the work that we do on a patient on the operating table can have consequences 10 years out. If we aren't modifying what we do to put the patient at the center of all of our decision making in the operating room, and if we aren't aware of the consequences of those actions, we might not really be doing our best service for our patients. So I encourage all of the residents that I train and all of the young surgeons that I mentor to be a part of a support group. And there's nothing better from a surgical standpoint to have these longitudinal patient relationships to affirm your choice of being in this field by hearing from a patient 1, 2, 5, 10 years from surgery that they're still alive and doing well because of the constant interventions that you did throughout their lifetime to continue to tweak things to make them better.
Ruddy: What about for patients who might not have access to a support group that would be specifically focused on the type of cancer treatment they had or a caregiver? For example, a patient maybe with a very rare cancer type or a caregiver of a patient with a very rare cancer type who received a very new type of treatment where it might be difficult to find others with similar experiences. Are there other ways that we can encourage social health and enhance cancer survivorship care for them?
Blackmon: That's a great question. One of the best ways that patients who have extremely rare diseases can connect with one another is through their advocacy groups. A rare disease is defined as less than 200,000 people in the United States, and there are plenty of them. But you could join a generic cancer support group or a generic chronic disease support group. There are other ways to find support, either through churches, synagogues, or religious communities, or through different organizations. There is a way for people to get support, not just in a support group, through programs like CaringBridge, which is an internet company that allows you to register and broadcast your progress as you go through treatment and give people access to controlled information that you're willing to share with a tight-knit community that you give username and password access to.
In Texas, we have a program called CanCare, where a survivor who has been through the difficult journey of their acute disease, and is doing relatively well, can sign up to be a mentor for a patient who's newly diagnosed with their disease. I think that's particularly helpful for patients who suffer from rare diseases when they want to reach back out to their community and do service. Training to be a mentor is a very important part of how you can reach back out to survivors. It can also be informal. As a surgeon, sometimes I meet a patient who reminds me of a patient that I've cared for many years ago, and if they seem to be struggling, it’s a little bit like matchmaking, where you may give the patient a story of somebody else who's been through that journey. Because of HIPAA, you have to ask both parties for permission to share information. But if both parties give that information, you can just connect them to one another. And sometimes that's enough to give them the support that they need to get successfully through that journey. But I think there are a variety of ways that people can get support. My favorite way is through a formal support group driven by a survivor and attended by other care providers who are experts and professionals with the ability to pull in new consultants who may or may not have expertise if they don't have the answer in the support group.
An example of that is, we ran the support group, but I wasn't the expert on all the common problems that we would see after esophageal cancer surgery. So every now and then, someone would bring up a topic that I didn't know the answer to, and we would invite a guest to come and help moderate the discussion around that particular topic. In those circumstances, I think I learned as much as the patients did. So I think traditional, nontraditional, any type of support is helpful.
Ruddy: You mentioned earlier the support group that you run for surgeons. Can you talk a little bit more about that? Are support groups a good way to combat burnout for clinicians?
Blackmon: I think so. Whenever you're in a minority group, having a sense of belonging to your profession is very important. Support groups give you that sense of belonging, even though you might be a smaller cohort within the specialty. Also, they face unique challenges. Some of the topics that we discuss in the Women in Thoracic Surgery support group might be related to staying focused, developing a niche, professionalism, how to get through developing your family and fertility issues, how to manage your home life and your work life, and maybe little life hacks to solving some of those unique problems that sometimes, unfortunately, women tend to deal with perhaps more than their male partners or colleagues.
Other topics that we discuss not infrequently are some of the more difficult topics like burnout, harassment, bullying, being treated differently, and trying to help women elegantly navigate through those more difficult waters as they sail through a career in cardiothoracic surgery and keep them alert to potential hazards and helping them sort of navigate those waters in a way that helps them to smartly make decisions that don't have terrible consequences. It's not always intuitive, and I think some of the legal ramifications are not what you get taught in medical school, so it's very helpful to have some experts who are a little bit more seasoned to help guide you.
Ruddy: I'm so glad you're doing that work. Could you also tell our audience about the digital tool that you developed to help support symptom management for cancer survivors? You alluded to it a bit earlier, but I think it's really important for people to understand how digital solutions might be helpful to our patients.
Blackmon: One of the most exciting things that we see happening in medicine is AI, machine learning, and novel ways to interpret more and more complex data. As a care provider, I noticed that we were not very good at describing how our patients were recovering after surgery. We didn't have very good tools to measure things like the degree of dysphagia, the degree of anxiety, the degree of pain, the location, and the duration. We now have things like Common Terminology Criteria for Adverse Events (CTCAE) that help us describe the frequency, the severity, and the interference with life around a particular symptom, but there might be many symptoms that these patients have, and those symptoms might be combined in a certain pattern that predicts a particular problem.
The deeper I went down the rabbit hole of trying to measure these symptoms and describe the interventions that might make those symptoms better, the more I realized that this isn't something you can do with a paper questionnaire. This isn't something that you can just score on the back of a napkin. This requires algorithmic evaluation and a more complex environment. That was one of the things that brought me to Mayo Clinic. Having the opportunity to work with a psychometrician and a survey methodologist, and then a digital team that built an app that was uniquely tailored to measure those symptoms and present them back to a patient in the form of a dashboard that the patient could understand and deliver back to their provider even, or their care team and share with those people their phenotype of symptoms to help them get the best treatment.
We even published in the Annals of Thoracic Surgery that 30 minutes with a provider still wasn't as good as using this tool with a dashboard to describe where a patient is. I think of this as a care accelerator. Instead of having to spend 20 minutes with a provider or a physician asking you questions about your symptoms and then trying to help them determine what symptoms are the most problematic, you get through that with this digital tool, and then your provider can spend that 30 minutes with you solving the problem, not trying to figure out what the problem is. Then you can actually use it to track and measure your progress with various types of interventions over time.
I think patients really want to see that they're making progress, not just feel that way. Having a good tool that measures that one time along a timeline and they can compare it to another time in the timeline and see the kind of progress that they're making over time can help them to feel a palpable sense of getting better and recovering.
Ruddy: It sounds like that also might be encouraging some of the communication that might help with care transitions. Is that one of the uses of your digital tool as well?
Blackmon: Yes. We look at cancer survivorship, which is made up of two different things. One is surveillance, looking for the cancer to come back, and the other is symptom management. A particular surgeon who operates on, say, 300 patients a year probably doesn't have the bandwidth to see those patients every 6 months for the rest of their lives. Eventually, a lot of patients will get transitioned from their surgeon back to their medical oncologist or even back to their family care provider. When they go back to an internist or a family practice doctor who isn't an expert in cancer care, they can use this tool or dashboard to help them understand when a patient's really in trouble and might need to come back to their cancer care team or back to their surgical team or when they're doing well, and they can just manage them themselves.
I think tools that help patients self-manage are really important. Tools that help the basic provider, either a family practice doctor or an internist who's not a cancer specialist, to know when they're able to guide a patient through their journey is really helpful because it keeps them in the group that's caring for all their other medical problems. But knowing when those trigger points are, especially when they need to come back or maybe a symptom that's problematic, that reports there might be a high likelihood of recurrence of disease, or there might be a high likelihood of a problem that needs another surgery to intervene, or a particular workup is needed. It might trigger what we call a care pathway algorithm to have a standardized workup for that problem so that the patient can get better.
One of the worst things that I saw in the support group and in my practice for the past 25 years is patients who continued to suffer over and over for years and years and sometimes became suicidal. We know that esophageal cancer has one of the highest suicide rates of all the cancers. It's, I think, partially because some of these patients have symptoms that are so severe, and it's so poorly understood, that they get a sense of hopelessness. Giving them tools to recognize their problems and guide them through how to solve those problems is so important to combating depression, anxiety, and all the psychological problems that happen around surviving these really terrible cancers. I think being able to deliver a patient through that and get them successfully recovered on the other side is really important. I think giving our patients tools that help them connect back to their providers and communicate is probably the key to a very successful transition of care to different care teams.
Ruddy: In the time we have remaining, it would be terrific if you could tell our listeners more about your book. I love it when audiobooks are read by their authors, as yours is, and your book includes so many inspirational stories from your career. Can you talk broadly about the book, but also about your choice to tell the story of Doyle Jennings first?
Blackmon: Thank you. I'm glad you asked that question. It started out as a description of the support group. Following a group of cancer patients for 8 years in a row lets you really get to know those people. They became almost like family members, and I learned so much from them and their caregivers. I learned how to be a better doctor, but I also learned how to be a better caregiver. As we went through that journey, I kept a journal, and I kept notes, and we started to publish papers on scientifically what we were learning from the group and the evolution of the questionnaire. Then we described how it turned into an app. But I focused each chapter on a particular patient because I thought that at different stages of the book, I encountered different patients who really articulated a point in time where I learned something important.
Doyle Jennings was one of my first patients. He was a very complicated patient, and I think if I had to care for him today, I still would struggle. His disease was extremely severe. The surgery that was required to correct his problem is probably one of the most complex surgeries that has ever been done.
As I went through that journey to try to figure out how to care for him as a young surgeon, it was extremely stressful. I needed a support group to help me get through caring for him, but I noticed that he was very stoic. He had played in the NFL. He was a farmer. We sometimes nicknamed him the Marlboro Man because he had a heavy smoking history, and he sort of looked like your average prototypical Marlboro man. But he was also very isolated; he was very disconnected at times from his family, and he was very reluctant to receive medical care or follow our care recommendations, and he had a lot of bad consequences that happened as a result of that.
I stayed relatively connected to his family. His son gave me permission to publish his story. What I learned from that was the importance of building a support system around you, that village of support, and having a support group. And it was the experience that I had with Doyle that made me form the support group because I thought, “Wow, I can do these complex surgeries, but I alone cannot get these patients through these surgeries. We're going to need a lot of help.” So I garnered that help from the other cancer survivors, the other caregivers, and my staff. We all just threw ourselves into a room on the first Tuesday of every month and started to talk through the issues. One of the most beautiful things that happened is that we solved the issues together. We all learned from one another, and the bond that was built through that support group ended up being one of the most special bonds that I've ever shared throughout my journey as a surgeon.
Ruddy: Thank you so much for this incredible conversation, Dr Blackmon. Today we've talked to Dr Shanda Blackmon about the importance of supporting patients and cancer care providers in a variety of ways and enhancing social connectedness, including through support groups. Her book, The Support Group: Connection, Hope, and Healing for Patients + Providers, is available from Mayo Clinic Press, Amazon, Target, Audible, and other bookstores. Thank you for tuning in. Please take a moment to download the Medscape app to listen and subscribe to this podcast series on cancer survivorship. This is Dr Kathryn Ruddy for the Medscape InDiscussion Cancer Survivorship podcast.
Listen to additional seasons of this podcast.
Resources
The Support Group: Connection, Hope and Healing for Patients and Providers
Psychological Support of Esophageal Cancer Patient?
Loneliness Among Cancer Caregivers: A Narrative Review
Upper Digestive Disease App for Electronic Patient-Reported Outcomes: A Mixed Methods Pilot Study
Suicide Rates Among Patients With Cancers of the Digestive System
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Cite this: Connecting Cancer Survivors With Support Groups - Medscape - Oct 21, 2025.
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