By Brittany Edelmann
March is Kidney Cancer Awareness Month. According to the American Cancer Society, 79,000 new cases of kidney cancer could be diagnosed in 2022. Hear from Northwestern Medicine oncologist Jeffrey Sosman about the advancements in research and treatment over the past few years, the importance of clinical trials and where the field of oncology is heading. And hear from psychiatrist Adam Stern and patent lawyer Leah Christoforidis about their journeys with kidney cancer and what they are doing to help raise awareness.
Brittany Edelmann: Hello and welcome to Medill Newsmakers. I’m registered nurse Brittany Edelmann, and in the next 15 minutes we’ll be discussing kidney cancer, as March is Kidney Cancer Awareness Month. To start off the show, this year and other years in the past, the Willis Tower in Chicago lights up orange in honor of those impacted by kidney cancer and to raise awareness. Other buildings around the United States light up orange too. According to the American Cancer Society, 79,000 new cases could be diagnosed in 2022. One of the most common types of kidney cancer is clear cell renal cell carcinoma. Some risk factors include smoking, high blood pressure, obesity and genetics. I spoke to psychiatrist Adam Stern. Stern was diagnosed with kidney cancer in 2018. To help him cope and to bring awareness, he wrote articles, created comics and even wrote a book.
Edelmann: Can you talk a little bit about how writing has maybe helped you and also with raising awareness with kidney cancer?
Adam Stern: To start out, I’d like to say thank you for chatting with me about this important topic. Writing has always been an outlet for me and a way to process my emotions and sort of put it out into the world. When I was diagnosed with kidney cancer in 2018, I had this very profound feeling like I needed to write about it. I’d been a physician for about 10 years, but I hadn’t been a patient between that entire time. I was really a healthy 33-year-old at that time. So, for the first time in my life, I’d been experiencing this life-threatening condition, and I felt like I needed to put it into words. It’s something that not a lot of people know about. Kidney cancer isn’t something that a lot of people are aware of. And so, my ability to put my experience onto the page and have a degree of self-disclosure I felt was somewhat refreshing. And people actually found some of my writing encouraging and comforting to know that there are real people behind these diagnoses and that life goes on, even when we are dealing with these very life-threatening conditions.
I did start creating these cartoons about the doctor-patient experience, and there’s a lot of material there because there’s so much absurdity in the world and especially when you’re a patient. So, there’s some cartoons about being a psychiatrist and a patient, and there are some cartoons about being a medical patient and that world, and there are some cartoons about being a father and the fun things that go along with that.
Edelmann: You wrote this book, “Committed.” What was it like writing it, and what would you say is the take-home message of the book?
Stern: Writing the book “Committed” was a dream come true because I just never really imagined I’d have the opportunity to write this book that would be published by a major publishing house. It was like featured in People magazine and all these things that I’ve gotten to do, interviews about it and speak to all kinds of interesting people and meet all kinds of interesting people. So, writing that book was just such a pleasure. The message of that book is three-fold. One is that the most important thing about doctors and patients is that they’re all human and they experience a human connection. So that’s the basis of all medical and especially psychiatric care. Two is that there’s a love story, it’s about how I met my wife in training. And three, I would say the message is that you should take risks and try things because, again, this book isn’t something I would’ve predicted would happen, but I was able to do it because I wasn’t afraid of the rejection of it not happening. In other words, I wasn’t afraid of it not working out so I took the risk, and even if nothing came of it, I would be happy I wrote the book. I would encourage everyone watching to do the same, not write books but take risk and do what you want to do.
Edelmann: While writing and utilizing his creative side helped Stern tremendously, he describes other things that have helped as well. In the early stages of kidney cancer, many people don’t have any signs or symptoms. But Stern shares information about some of the signs and symptoms of kidney cancer that can appear in later stages and what research is showing for the future.
Stern: So of course my family and my care team. I’m fortunate that I’m engaged with an expert team of kidney cancer doctors in the Boston area, where I live and work. But my family has been the most supportive. And then connecting with a community of people going through the same kind of experience has been very important. There are all kinds of online communities. One that I’m engaged with is called Smart Patients, SmartPatients.com. It’s a very supportive moderated group. So, in other words there are people that are invested in making sure there’s not misinformation being spread, and it’s largely a group of people and caretakers — spouses and children and parents with the same disease that support each other, and that’s been extremely helpful. I also think when you’re dealt a hard hand like cancer, I think it’s important to consider if professional help might be useful. So, engaging in therapy is always a good idea especially if you are experiencing a feeling of being overwhelmed by what you’re going through.
For people like me where symptoms become apparent, which can be flank pain in your back, something called gross hematuria where there’s actually blood in the urine, those are the frank signs that something might be wrong in the kidney, and at that point you have to seek medical attention. It just so happens that kidney cancer is pretty quiet until it gets pretty far advanced. What I’m hopeful for is that in the years to come, there actually will be noninvasive screening. In the years to come, it’s not ready yet in prime time, but research shows they’re probably going to do a blood test and screen for all sorts of cancers using something called cell-free DNA testing in the blood. And that’s something I’m very excited about not for myself, but for future patients before it becomes too advanced.
Edelmann: As Stern mentioned earlier, relatives have helped him immensely. He shares more about his family and his new son.
Stern: So our baby is about 15 months old, a year and a little bit. His existence is sort of a testament to how far the field has come in terms of keeping folks like me alive with advanced stage four cancer. It was the kind of thing we always wanted, to be a family of four. When I was diagnosed, initially it was a thought that my life would be very different than I thought. Immediately I thought we were done having children. But I’ve had long periods off treatment, and I’m doing very well. I hesitate to use the word blessing, but it’s been a wonderful, wonderful thing, and I attribute it to good luck and the wonderful care I’ve received and just being very persistent in our desire to live the life we want. And I hope in particular it’s been a gift to our older son and now our younger son to have each other for the rest of their lives, and so for that I’m most thankful for everyone that’s sort of allowed me to continue to have this life.
Edelmann: The field of oncology has advanced immensely over the past few years. Oncologist Jeffrey Sosman talks about the advancements in research and treatment, and where the field is now when it comes to personalized medicine and genomics. And where he sees the field heading.
Jeffrey Sosman: I can go over the last few years. There’s really been a number of advances, both in the actual application directly to therapy, as well as the science behind response to therapy and the general biology of the tumor. We now have four, relatively new over the past five years, first-line regimens, immune therapy-based regimens for clear cell kidney cancer. None of those were in the existence before five years ago. The other thing is there’s a new drug has just been approved for Von Hippel-Lindau disease. It directly inhibits a molecule called HIF-2 alpha. And that really is a key driver to clear cell kidney cancer.
I think the focus on immune therapy isn’t going to be decreased, it will continue. And there will be new agents and new ways to modify the immune system to enhance its effect against cancer. I think we’ll also learn to give these immune agents earlier and even prevent cancer from recurring at all. I think what you mentioned was really important. I think within immune therapy there is a desire to personalize this. As I said with clear cell cancer, we know that some of those cancers are driven by immune agents and other by vascular, and that can allow us to personalize. I think the cell-free DNA is probably here already. There’s some more recent assays that look very promising. The real question is how exactly to use them? But they certainly can help prognostically and even in terms of prediction.
Edelmann: Dr. Sosman says all of these new treatments wouldn’t be here today without research, funding and clinical trials. The American Society of Clinical Oncology conducted a survey in 2020, which showed nearly 60% of respondents’ programs halted screening and/or enrollment for certain clinical trials. Dr. Sosman says he can’t emphasize the importance of clinical trials enough.
Sosman: None of this, all of these agents came through, initially most animal research, but all had to come into clinical research. And patients who get involved in clinical research, certainly the effort is primarily to improve their outcome, but they also provide an immense support for really finding new drugs and moving the field forward.
Edelmann: Chicago resident Leah Christoforidis shares her story and what has helped her along the way.
Leah Christoforidis: I am a stage four patient undergoing treatment right now. I’ve worked with a number of oncologists and some surgeons as well, some interventional radiologists, talking to everyone to see what possibly could be in the cards for me in terms of achieving a cure. It’s a pretty complicated endeavor, as you can imagine, but in working with the teams at Rush, Northwestern, University of Texas, Southwest, Memorial Sloan Kettering, you know I’m doing well and I’ve made some progress. So, things are looking good right now.
There are a number of organizations, KidneyCAN is one of them and the KCA is another, that have a lot of toolkits and support for patients and their caregivers, which I think is really important. And that’s one of the things I’ve found to be the most helpful, is reading and interacting with other patients, you know, those that are going through the same thing and may have tips for certain side effects or can inspire you to carry on. But just more importantly, someone to talk to that understands all of it.
Edelmann: KidneyCAN and the Kidney Cancer Association are two organizations that also help raise money for research and advocate for more funding to help find a cure. You can head to kidneycan.org and kidneycancer.org to learn more. Christoforidis has been working out at Shred 415 in Chicago for the past eight years. This year, she partnered with the gym to host a fitness class and raise money for the Kidney Cancer Association. They surpassed the fundraising goal of $4,000, and the class filled up within 24 hours. They even had raffles and gifts for people who attended the class and raised money. The staff at Shred 415 hope to continue events like these not just in March, but year-round. Thank you to Dr. Stern, Dr. Sosman and Christoforidis for speaking with me. And thank you all for tuning into Medill Newsmakers. I’m registered nurse Brittany Edelmann. See you next time.
Brittany Edelmann is a health, science and environment reporter at Medill and a registered nurse. Follow her on twitter @brittedelmann