David Raubach: I want to thank you guys for joining us on today's episode of the Cancer Project podcast. We are really privileged to be joined by Dr. David Sandberg, who is a fellowship-trained pediatric neurosurgeon and the former director of the pediatric neurosurgery program at McGovern Medical School at the University of Texas, and an adjunct professor at the University of Texas Health Science Center. Dr. Sandberg is the recipient of numerous research grants and has pioneered novel treatment approaches for pediatric brain tumors, and was a principal investigator of several clinical trials conducted at McGovern Medical School and MD Anderson Cancer Center.

David Raubach: Dr. Sandberg has also just written a book — and I have to say, this is one of the best books I have ever read about what it is like to be a doctor. The book, Brain and Heart: The Triumphs and Struggles of a Pediatric Neurosurgeon, was just released in May. You can find it in hardcover on Amazon and multiple other sites, and it is also available on Audible, read by the author. Thank you so much for joining us today.

David Sandberg: Thank you so much for having me on, and thank you for your kind words about my book.

David Raubach: Dr. Sandberg, tell us a little about your background and what led you into medicine first, and then ultimately into pediatric neurosurgery.

David Sandberg: It has been a long journey. I grew up in South Florida. My father was a physician — an ophthalmologist — and he was kind of my idol. When I was in high school and college, he took me on three medical mission trips: one to the Dominican Republic, one to Jamaica, and one to the island of Antigua. He was doing eye surgery, and patients had diseases as treatable as cataracts that had left them blind — things that would never go untreated in the United States. He would do a simple operation and make a blind person see. I thought, I want to do something meaningful with my life. I was actually a history major in college. I approached medicine from a public health standpoint and thought I would do something in primary care, maybe in an inner city. But once I started rotations and rotated through neurosurgery, a flame was lit and a passion was ignited, and I have never looked back.

David Raubach: You attended Harvard for undergrad, then Johns Hopkins for medical school, and then residency at Cornell — is that right? And then fellowship at Children's Hospital in Los Angeles.

David Sandberg: Correct. Harvard for undergrad, Johns Hopkins for medical school, and then residency at Cornell in New York.

David Raubach: I am a history major myself, also working in the field of medicine, so I can appreciate that path. Tell us about your fellowship — what were some of the highlights and what did you take away from that experience?

David Sandberg: Fellowship is a transition between residency training and independent practice. My fellowship was in the days before work-hour restrictions. I took three days off the entire year. I was on call every other night, but I also had attending privileges, so I could do certain cases by myself. I did about 600 surgeries during that year. I got very little sleep, but I absolutely loved it. I had an incredible experience and came out battle-trained and ready to go.

David Raubach: Who was somebody from that time who had a big influence on your career going forward?

David Sandberg: The biggest influence in me becoming a pediatric neurosurgeon was Mark Souweidane, who is the director of pediatric neurosurgery at Weill Cornell, where I was a resident. He was a spectacular surgeon with beautiful hands, a wonderful teacher, and amazing with patients and kids. I looked at him and thought, I want to be like that guy. I am still trying to be like that guy. In fellowship, I had two wonderful mentors — Gordon McComb was the senior neurosurgeon and Mark Krieger the junior. Both spectacular surgeons and teachers, and dear friends. I learned so much from them.

David Raubach: Tell us what it broadly means to be a pediatric neurosurgeon. I know you did far more than just oncology.

David Sandberg: Neurosurgery has become very highly subspecialized — there are spine surgeons, vascular surgeons, epilepsy surgeons, and so on. But pediatric neurosurgeons, because of the rarity of the diseases, cannot focus on just one diagnosis. We are the last kind of general neurosurgeons. We do everything in the brain and spine in children: congenital malformations like spina bifida, brain and spine tumors, epilepsy surgery, hydrocephalus, craniosynostosis. I did everything, but I had a specific focus — both from a research and clinical standpoint — on brain tumors in children.

David Raubach: What has changed over the decades in the treatment of cancerous brain tumors in children, and what has stayed the same?

David Sandberg: I am told the incidence of pediatric brain tumors is rising. It is the second most common tumor and the most common cause of cancer death in children. As for treatments — some surgeries are exactly the same. If you have a big tumor in the back of the brain, the surgery I would do now is very similar to what I would have done 20 years ago. For some operations, technology has made things less invasive. We used to do a big incision, remove a large piece of skull, a huge operation lasting 4, 6, 8, 10 hours. Now, for some of those same cases, we can make a tiny incision without shaving any hair, drill a small burr hole, and accomplish the same thing with an endoscope, a laser, or other tools.

David Raubach: What did you find to be the most challenging type of surgery as a surgeon?

David Sandberg: I learned never to underestimate any surgery — any surgery can become challenging with unexpected findings. But I was most passionate about very challenging deep tumors: tumors in the pineal region, the third ventricle, the suprasellar space behind the nose and eyes. Places that are difficult to reach, where important structures surround the tumor, and where injuring those structures can cause a stroke or a severe permanent problem. I loved the technical challenge of those operations.

David Raubach: One of the things I love about the book is that you talk about the heart component of brain surgery — the relational aspect with patients and their parents. Why did you title the book Brain and Heart?

David Sandberg: There are many meanings to the word heart in this context. I am mostly talking about the heart in the metaphysical sense — the center of our emotion and love. We think of brain surgery as very precise, and it is, for the most part. But the public should be slightly terrified by how much of what we do is not as precisely defined as you would want. There is no published literature that clearly gives us the right pathway in every single case. If you show a single case to five pediatric neurosurgeons, you might get five different answers. So I found throughout my career that I needed to use not just my brain but my gut and my heart. And the other meaning of heart is heartbreak. We deal with children who die, children who have brain tumors. Imagine being told your child has a brain tumor — and not just a tumor, but a cancer — and that they will need surgery, radiation, chemotherapy, and might not survive after all of that. That is too much to bear for any family.

David Raubach: Talk about how you approached difficult conversations with parents, especially when the prognosis was not going to be great.

David Sandberg: I think it is one of the most important things I do. Interestingly, in my entire medical training — medical school, residency, and beyond — I had zero minutes of instruction on how to give bad news to a family. And it may be different at some schools today, but I think it is undertaught everywhere. Families remember these conversations for the rest of their lives. You need to be honest. I have seen mistakes made by other physicians where the truth is so painful to convey that they avoid it — they do not tell a family that the chemotherapy has failed and there is no proven treatment. That does a disservice to the family. They cannot make the best plans for their loved one. You also have to listen, answer questions patiently, and have compassion. That patient is that family's whole world. You have to give that moment its full weight.

David Raubach: How did you maintain that compassion over the years and not become jaded or develop a hard surface from repeatedly delivering bad news?

David Sandberg: It was easy because I always thought it was so important. Even if I am telling a family their child has died or is going to die, how I have that conversation will make a lasting impact. You can have it in a way that leaves poor feelings that do damage, or in a way that brings some degree of comfort or healing. Those conversations carry the highest value, and I never needed to motivate myself to take them seriously.

David Raubach: You also made it a point to bring residents and medical students into those difficult conversations so they could learn from watching you.

David Sandberg: It became a reflex. Every time I was going to have one of those horrible conversations, I would look around and see who was nearby. If it was a resident or a medical student, I would say, “Come with me.” As we were walking quickly to meet the family, I would tell them what I was going to say. Afterward, I would check in to see if they were okay, because this is hard for everyone in the room. I would encourage them to think about what I said — take what resonated and use it, and if something could be done better, please tell me. Watch other people do it and take the best from everyone.

David Raubach: You write in the book that it is not normal to lose a child and so there is no normal response. Talk about the broad spectrum of emotions you encountered from parents receiving difficult news.

David Sandberg: I have seen absolutely every reaction. Many parents cry. Some do not cry at all — they stare straight ahead and do not say a word. I have seen parents so overwhelmed that they literally threw themselves on the floor, rolling around and screaming at the top of their lungs. What I teach residents and medical students is that every single reaction is completely normal, and you should treat it as normal. Do not judge anyone for their response. The news they are receiving is that painful.

David Raubach: There is a story in the book about a husband and wife who began to attack each other after receiving bad news. Talk about that and about the advice you would give couples navigating this kind of crisis.

David Sandberg: Having a child with a major illness or facing a child's death is a profound stressor on any relationship. In the book I describe a scenario where a husband and wife were literally at each other's throats in front of me. We were all uncomfortable, and I tried to point them toward being kind to one another during a difficult time. I am not a marital therapist and I have no special wisdom there. But these are extraordinarily tough moments for couples.

David Raubach: You mention your mother multiple times in the book. Talk about the impact she had on your career.

David Sandberg: My mom was always the one to point out the person who was suffering, who was in need. Our family viewed it as our responsibility to help others. We knew how lucky we were — my father was a doctor, I had every advantage. My mom was into community service and helping others, and I carry that with me every day.

David Raubach: Talk about your experience with medical missions overseas and what you learned about what it means to be a doctor.

David Sandberg: I learned so much it is hard to put into words — I have a whole chapter on it in the book. Going with my dad, it was extraordinary to see people blind from a curable problem that could be fixed in half an hour, and to understand they were blind only because they lacked access to that half-hour operation. In neurosurgery, I have been to places with no neurosurgeon at all — patients simply die of the natural history of their disease. That is why I focused on training neurosurgeons in developing countries rather than just doing surgeries myself. Teach a man to fish. I have been to Haiti ten times — the poorest country in our hemisphere, with poverty comparable to sub-Saharan Africa. You basically play God and decide who lives and who dies, because there are far more patients than you can help. These children are no less deserving of healthcare than my own kids. They were simply unfortunate enough to be born into that environment.

David Raubach: Describe the operating environment in Haiti compared to a modern hospital in Houston or Oklahoma City.

David Sandberg: One of the reasons I love going is that when I come back, I stop complaining about anything in the operating room. In the United States, I worked in big, beautiful, well-lit rooms with every piece of technology you could want: high-powered operating microscopes, frameless stereotaxy — million-dollar equipment — endoscopes, perfect anesthesia monitoring. In Haiti, you are happy if the electricity stays on for the whole case, because very frequently the lights would go out and we would be operating only by headlights, which was totally inadequate. We had a fraction of the instruments. No microscope — just surgical loupes, magnifying glasses. We did have endoscopes, but the monitor would sometimes go pitch black in the middle of a case with an instrument inside a child's brain. You gasp, hold steady, and hope somebody can fix the problem. It is not ideal. But it is beautiful — pure medicine. No insurance companies, no money changing hands. Just a doctor and a patient, trying to save a life.

David Raubach: Shifting gears — you talked earlier about surgery being as much an art as a science. Talk about humility in that context, including your willingness to call in colleagues when you were uncertain.

David Sandberg: You have to have the humility to do that. In oncology, the most difficult decisions arise in kids where there is no cure. The example that comes to mind is DIPG — diffuse intrinsic pontine glioma, now called diffuse midline glioma. People ask what the worst cancer is. They might say pancreatic cancer in adults. This is worse than pancreatic cancer, because it has a worse prognosis and it is in children. The brain stem is completely expanded by tumor. It is not amenable to surgery, not amenable to chemotherapy. Radiation typically alleviates symptoms, but only for a few months. No chemotherapeutic agent, alone or in combination, has ever made a dent in this disease. Kids get radiation, then go on clinical trials. In my over two-decade career, I never saw a single patient with a successful outcome from those clinical trials. So what do you advise those families? How do you take away their hope, or maintain it, or figure out what is right?

David Raubach: How do you balance providing hope with being honest and realistic?

David Sandberg: That circumstance is the hardest one, because the honest truth is that there is no hope. That child is going to die within a year or a few months, and it is going to be a terrible death and a horrible year for the family. So I shift toward honesty and compassion. I do not provide false hope. I tell families what their options are and I tell them honestly the outcomes of the clinical trials that have been performed, because they deserve that information. Some doctors will see that same child and say, “We are going to treat her with radiation and then try some chemotherapy and hopefully it will work.” Hopefully it will work? Nothing has ever worked on this disease. Framing it that way and giving false hope to a family is unkind.

David Raubach: Why did you decide to write this book?

David Sandberg: A lot of reasons. Over my career, I accumulated amazing stories and would occasionally write a few lines in a document to capture them. The other reason is that while there are many books about the patient experience — what it is like to go through cancer treatment — there are very few that honestly open the mind of the doctor. When I have a difficult conversation with a family, I choose my words very carefully. What I say and what I am actually thinking are not always identical, because I am trying to say what is best for them to hear in that moment. The book also speaks to the next generation — to kids in high school or college asking whether medicine is for them, whether neurosurgery is for them, whether they are built to give terrible news, particularly about children. And as I accumulated gray hair, I hope I accumulated some wisdom about the doctor-patient relationship that I wanted to share.

David Raubach: Was there a story in the book that moved you a second time as you wrote it?

David Sandberg: One story I relive over and over is the story of Joselyn — and I use her name with permission from the family. She came to Houston for one of our research trials. She had a recurrent malignant ependymoma. She was a beautiful little girl who had already failed surgery multiple times, radiation therapy, chemotherapy, and experimental chemotherapy. Our clinical trial — infusing drugs directly into the brain — was her last hope. We treated her over a course of a few months, and she seemed to be doing great. Then came the moment of truth: the follow-up MRI to see whether the treatment had worked. That morning, I was so inefficient — completely atypical for me — because I could not focus on anything else. I kept hitting refresh, refresh, refresh on the screen waiting for the images to load. When they came up, what I saw was devastating. The tumor had dramatically increased in size. It had laughed at my attempts to treat it.

David Sandberg: I had to go tell the parents that their last hope had failed and their daughter was going to die. Normally I walk fast from place to place, but that day I walked slowly. When I sat with the parents and pulled up the images, I started to cry — not a couple of tears rolling down my cheeks, but hard, choking on my words, struggling to get them out. I thought: how unprofessional. I have never seen a doctor do this. Years later, I spoke with the parents — who are close friends to this day — and I apologized for what I thought was my loss of control. They said, “No. What you did that day made us feel like you were really there with us, that you were in it with us.” I learned something from that. Patients want to know their doctor cares. And one of the ways they feel that is by seeing the doctor's emotion.

David Raubach: Talk about managing surgical complications — how do you process a case that does not go the way you hoped?

David Sandberg: The brain is so unpredictable. I can take out a brain tumor in a child with everything going perfectly, and the next day do the same operation with the same technique in a similar child, and the patient wakes up not moving the left side as well as the right — a permanent problem. Sometimes I know why. Sometimes I do not. There are two unhealthy extremes. Some surgeons say, “I trained at the best institutions, I have done this hundreds of times, it is not my fault” — and I think they should not have the privilege of practicing surgery if they are that dismissive. At the other extreme, some surgeons are so devastated by complications that they become ineffective — they stop removing tumors completely, leave tissue behind to protect the patient, and then the tumor grows back requiring a second surgery. Neither extreme helps anyone. The healthy middle ground is rigorous self-review: losing sleep, replaying every phase of the operation, asking whether anything could have been done differently in the surgery or the post-operative care. And then presenting at a morbidity and mortality conference — 50 to 100 people in the room, your boss, students, people you do not know — to discuss your worst day so that everyone learns and patients get better care as a result.

David Raubach: Talk about work-life balance as a neurosurgeon. What is it actually like, and how did you manage to be present for your family?

David Sandberg: As a resident, you are managing 50 to 70 patients, your phone is going off every two minutes, and when you are on call you do not sleep at all. Back before work-hour restrictions, you would then work the next day as if you had not been up all night. As an attending, the nights are not as hard, but you still get called in for emergency surgeries in the middle of the night and work the next day. Family has always been important to me — my dad coached my basketball team and was there throughout my childhood, and I wanted to be that kind of father. What I found is that you have more control over your schedule once training is done. I can decide when to schedule surgeries, when to be on call. If it is my kid's graduation ceremony, I am not going to be on call that day. But I have missed soccer games, I have had days where I did not see my kids at all. I have had to leave family dinners for emergencies. And yet I have two fabulous, well-adjusted kids and feel very close with them. It has all worked out.

David Raubach: What would you want a reader from the general public to take away from your book about how to think of doctors?

David Sandberg: When a reader sits down with their doctor face to face, I hope the book gives them background on what that doctor went through to get to that moment. I hope it helps them understand the uncertainty in the advice they receive — that there is not always one right answer. And hopefully they will sense the compassion behind that doctor's carefully chosen words, and have some sense of what the doctor might be thinking but not quite saying.

David Raubach: What advice would you give a patient who is wondering whether to seek a second opinion?

David Sandberg: You need to feel comfortable with the person taking care of your loved one. If you do not, get a second opinion — or a third, or as many as you need. Second opinions can be costly, and not everyone has that luxury. They can also create confusion — I have had patients come to me as a second opinion, I have agreed with the first surgeon, and they go back to their original doctor satisfied. Other times I have disagreed, did not think surgery was needed at all, and now they have two contradictory opinions and seek a third. It can be difficult. But your comfort and confidence in your care team matter, and that is an individual decision each family has to make.

David Raubach: You mentioned you retired early due to a medical condition. Would you be willing to share that with our audience?

David Sandberg: I am 54 years old. I stopped practicing in June at the age of 53 — much younger than I anticipated retiring. Over the prior months, I started developing a tremor in my right hand. It was a resting tremor — when my hand is still, it shakes a little, but when my hands are in motion, as in surgery under a microscope, no one was noticing any problem. But I know the natural history of the condition. I was diagnosed with Parkinson's disease. There are athletes who stick around too long on the playing field, and surgeons who operate into their 70s and 80s when they are no longer at their best. I never wanted to be one of those people. So in January I announced to my family, then to my work colleagues, then to my patients and families — all at once — that I had Parkinson's and was retiring from neurosurgery. I kind of blew up my life all at once.

David Raubach: How are you approaching this diagnosis as a patient now, having spent a career on the other side of those conversations?

David Sandberg: It is very different being on the patient side. It is better to be the doctor than the patient — I kind of knew that already. But I have a lot of gratitude. I am grateful for the opportunity I had to take care of thousands of children, to form meaningful relationships with those families, to have the feeling of saving lives, of being present with families in their worst moments. I am glad this happened to me in my 50s rather than my 30s or 40s. I have given much worse news than I have received. I am grateful I do not have cancer, that I have a normal life expectancy. I have learned so much from the bravery of my patients over the years, and I am trying to bring that same bravery now. I plan to have a second career focused on childhood poverty — likely working with homeless kids — because if I was not a neurosurgeon, I would still need to be doing something to help children.

David Raubach: How do you want people to think of you — not as a surgeon, but as a person?

David Sandberg: I will leave everyone to form their own opinions. That is not important to me. I hope there are lessons in the book that are valuable to patients, families, and trainees, and I hope they enjoy it.

David Raubach: That humility is probably the biggest thing I took away from the book. It must have been extraordinarily meaningful for your patients to encounter a doctor who brought that heart and that humbleness to what he was doing — even while saving lives.

David Sandberg: Neurosurgery is a humbling profession. People think of neurosurgeons as arrogant. The ones I know — and I know so many — most of them are confident in their abilities, yes, but they learn humility the hard way over the years, because the brain is unpredictable and unforgiving.

David Raubach: Thank you so much for your time, Dr. Sandberg. I encourage everyone to go check out Brain and Heart — it is an incredible book, very well written, and for those of you on Audible, Dr. Sandberg does a wonderful job narrating it as well.

David Sandberg: I really enjoyed talking to you. Thank you for inviting me on your show and for what you are doing to educate families about what patients go through with cancer. I wish everybody the very best.