Patient Perspectives on Cytoreductive Nephrectomy after the CARMENA Trial - Dena Battle
February 26, 2019
President of KCCure, Dena Battle joins Monty Pal in a discussion on the management of de novo metastatic kidney cancer and the change in practice from cytoreductive nephrectomy to an option of systemic therapy driven by the results of CARMENA trial. Dena shares the patients perspective on this treatment paradigm which comes from a patient survey her organization put forth answering the question of if patients would still prefer upfront surgery before starting systemic treatment knowing first and foremost that surgery would not impact overall survival. An interestingly high number, Dena advocates for the importance to patients in understanding the complexity of studies like the CARMENA trial.
Biographies:
Dena Battle is the President for KCCure. She began her career in Washington, DC, as a congressional aide, and went on to work as a lobbyist for more than 10 years, working primarily on tax and healthcare policy. She serves on the Advisory Board for the Johns Hopkins Sidney Kimmel Cancer Center and as a member of the Patient and Family Advisory Council. She has testified before the FDA – Oncological Drug Advisory Board (ODAC) and helped co-author an NCI-ASCO-sponsored paper on improving end-of-life care for cancer patients. In 2009, at the age of 40, Dena’s late husband Chris was diagnosed with metastatic kidney cancer. Together, they began a quest for the best care possible to combat the disease. Chris was treated at four different comprehensive cancer centers and participated in multiple clinical trials.
Sumanta Kumar Pal, MD Associate Clinical Professor, Department of Medical Oncology & Therapeutics Research, Co-director, Kidney Cancer Program, Medical Oncologist, City of Hope
Biographies:
Dena Battle is the President for KCCure. She began her career in Washington, DC, as a congressional aide, and went on to work as a lobbyist for more than 10 years, working primarily on tax and healthcare policy. She serves on the Advisory Board for the Johns Hopkins Sidney Kimmel Cancer Center and as a member of the Patient and Family Advisory Council. She has testified before the FDA – Oncological Drug Advisory Board (ODAC) and helped co-author an NCI-ASCO-sponsored paper on improving end-of-life care for cancer patients. In 2009, at the age of 40, Dena’s late husband Chris was diagnosed with metastatic kidney cancer. Together, they began a quest for the best care possible to combat the disease. Chris was treated at four different comprehensive cancer centers and participated in multiple clinical trials.
Sumanta Kumar Pal, MD Associate Clinical Professor, Department of Medical Oncology & Therapeutics Research, Co-director, Kidney Cancer Program, Medical Oncologist, City of Hope
Read the Full Video Transcript
Monty Pal: Welcome to UroToday. My name's Monty Pal, and I'm a Medical Oncologist at The City of Hope Comprehensive Cancer Center.
It's my distinct pleasure today to have Dena Battle here, who's the President of KCCure. Dena's a close friend and has done just a ton of fantastic work for the kidney cancer community. Dena, thanks so much for joining us.
Dena Battle: Thanks Monty, for having me. I really appreciate it.
Monty Pal: Oh. It's my pleasure. Well you know, start by saying that the paradigm of managing de novo metastatic kidney cancer, kidney cancer that's spread from the get-go, it's really kind of been flipped on its head to some extent, over this past year.
We always used to consider surgery first. Now with the recent results of the CARMENA Trial, we're thinking about it a little bit differently. But, that's the physician's perspective. Tell us what patients are saying about this.
Dena Battle: Yeah, absolutely. As you mentioned, CARMENA was brought out of ASCO. They brought out the data last year at ASCO. And it's practice changing in terms of cytoreductive nephrectomy, and whether a patient would get upfront surgery before starting systemic therapy. And, there was so much research done in CARMENA. And, we're grateful for that. But normally, ask patients how they felt about it.
So right after that data came out, we decided to do a survey in our patient communities, to ask them how they would feel about cytoreductive nephrectomy, what mattered to them. And, we were very upfront in the questioning. We said, "Knowing that having surgery would not impact your overall survival, would you still want surgery?"
And interestingly enough, we had 185 patients respond. Seventy percent still said they wanted cytoreductive nephrectomy, which is a pretty high number.
And we think that that information is really helpful for physicians and providers, to think about where patients are coming at. As we look to change guidelines and change practice, we really have to know, "How are patients gonna feel about that? How much time do we need, to change that perception of how we're managing it? How can we communicate better to a patient, who might not be a candidate for cytoreductive nephrectomy, to ensure that they don't feel like their doctor's just giving up on them altogether?"
Monty Pal: Makes perfect sense. And I've gotta ask, and this is something you must have thought about after looking at this data, why do patients want that primary tumor out so badly in this context? Seventy percent? I mean, that's a pretty staggering number.
Dena Battle: It is. It's a high number. You know? It's really hard to say what's going through a patient's head at any moment. I can tell you having ... I lost my husband to kidney cancer. When he was diagnosed, when you hear those words, "You have cancer in your body," it's just, "Get it out. I want that out of my body."
And even if you can't get all of it out, as physicians we know that if you can't render someone free of disease, surgery isn't always the best way to go. But for a patient, just having less of the disease in their body is meaningful to them.
And that primary tumor, it's a big tumor usually when you have metastatic disease. Getting the bulk of that out to them, is just one way of saying, "Okay. I have less of it and my disease, in my body now. So the systemic therapy's gonna work better. There's less cancer to fight."
So, you know? I think there's ... Some of it's a little bit of misperception on how treatment and surgery works. But also, some of it is just really wanting that cancer gone.
Monty Pal: I can definitely understand that sort of psychological impetus. That makes perfect sense. Now, I will say that amongst the different trials we have in kidney cancer. You know? We have Drug A, versus Drug B, and so forth.
CARMENA’s a little complicated. Right? 'Cause it takes the surgical modality. It mixes it with the systemic therapy modality. They're all the caveats to CARMENA patients, that were enrolled on the study. It didn't get the assigned therapy.
What's a good way for us on the investigative community side, to convey to patients some of the complexity of these studies. Do you have any tools that we can use, perhaps?
Dena Battle: The first thing I would say is, we have to be cautious about what guidelines and what practice changes we make. I think we should think about the fact that overall survival might not be the most important component for patients. There might be some patients were debulking is important to them. And in situations where we might be looking at end of life scenarios for patients, we should take into consideration that maybe that is something that would be meaningful to them.
And, I actually have known patients who had a cytoreductive nephrectomy, who really didn't change the course of their disease. They ended up dying of their disease.
But family members came back and said they were so glad that that person was able to get surgery. I think we have to add that into practice guidelines. We have to keep that component in there.
In terms of talking to patients, I think it's ... We have to make sure that they understand that the goal of systemic therapy even without surgery, is still focused on extending their life, and providing them the quality of life while they're there.
So making sure that they really understand that there's still someone fighting for them, that there's still a real effort/concerted effort, to battle that cancer. It's just using different means.
And also, I think we have to make sure that deferred nephrectomy is still something that we're considering. If systemic therapy is able to shrink disease down, patients should be told, "Hey. We still are ... There's still a possibility of debulking, of having a nephrectomy down the road. Our goal is still to have you free of disease, if at all possible."
Monty Pal: Awesome. Excellent points here. And, gosh. I've gotta say Dena, the kidney cancer community is so lucky to have such a passionate advocate like yourself. Thank you for everything that you do.
Dena Battle: Oh. Well, thank you Monty. And I have to say, the kidney cancer patient community is grateful for you, and all the work that the physicians are doing to fight for them.
Monty Pal: I so appreciate that.
Monty Pal: Welcome to UroToday. My name's Monty Pal, and I'm a Medical Oncologist at The City of Hope Comprehensive Cancer Center.
It's my distinct pleasure today to have Dena Battle here, who's the President of KCCure. Dena's a close friend and has done just a ton of fantastic work for the kidney cancer community. Dena, thanks so much for joining us.
Dena Battle: Thanks Monty, for having me. I really appreciate it.
Monty Pal: Oh. It's my pleasure. Well you know, start by saying that the paradigm of managing de novo metastatic kidney cancer, kidney cancer that's spread from the get-go, it's really kind of been flipped on its head to some extent, over this past year.
We always used to consider surgery first. Now with the recent results of the CARMENA Trial, we're thinking about it a little bit differently. But, that's the physician's perspective. Tell us what patients are saying about this.
Dena Battle: Yeah, absolutely. As you mentioned, CARMENA was brought out of ASCO. They brought out the data last year at ASCO. And it's practice changing in terms of cytoreductive nephrectomy, and whether a patient would get upfront surgery before starting systemic therapy. And, there was so much research done in CARMENA. And, we're grateful for that. But normally, ask patients how they felt about it.
So right after that data came out, we decided to do a survey in our patient communities, to ask them how they would feel about cytoreductive nephrectomy, what mattered to them. And, we were very upfront in the questioning. We said, "Knowing that having surgery would not impact your overall survival, would you still want surgery?"
And interestingly enough, we had 185 patients respond. Seventy percent still said they wanted cytoreductive nephrectomy, which is a pretty high number.
And we think that that information is really helpful for physicians and providers, to think about where patients are coming at. As we look to change guidelines and change practice, we really have to know, "How are patients gonna feel about that? How much time do we need, to change that perception of how we're managing it? How can we communicate better to a patient, who might not be a candidate for cytoreductive nephrectomy, to ensure that they don't feel like their doctor's just giving up on them altogether?"
Monty Pal: Makes perfect sense. And I've gotta ask, and this is something you must have thought about after looking at this data, why do patients want that primary tumor out so badly in this context? Seventy percent? I mean, that's a pretty staggering number.
Dena Battle: It is. It's a high number. You know? It's really hard to say what's going through a patient's head at any moment. I can tell you having ... I lost my husband to kidney cancer. When he was diagnosed, when you hear those words, "You have cancer in your body," it's just, "Get it out. I want that out of my body."
And even if you can't get all of it out, as physicians we know that if you can't render someone free of disease, surgery isn't always the best way to go. But for a patient, just having less of the disease in their body is meaningful to them.
And that primary tumor, it's a big tumor usually when you have metastatic disease. Getting the bulk of that out to them, is just one way of saying, "Okay. I have less of it and my disease, in my body now. So the systemic therapy's gonna work better. There's less cancer to fight."
So, you know? I think there's ... Some of it's a little bit of misperception on how treatment and surgery works. But also, some of it is just really wanting that cancer gone.
Monty Pal: I can definitely understand that sort of psychological impetus. That makes perfect sense. Now, I will say that amongst the different trials we have in kidney cancer. You know? We have Drug A, versus Drug B, and so forth.
CARMENA’s a little complicated. Right? 'Cause it takes the surgical modality. It mixes it with the systemic therapy modality. They're all the caveats to CARMENA patients, that were enrolled on the study. It didn't get the assigned therapy.
What's a good way for us on the investigative community side, to convey to patients some of the complexity of these studies. Do you have any tools that we can use, perhaps?
Dena Battle: The first thing I would say is, we have to be cautious about what guidelines and what practice changes we make. I think we should think about the fact that overall survival might not be the most important component for patients. There might be some patients were debulking is important to them. And in situations where we might be looking at end of life scenarios for patients, we should take into consideration that maybe that is something that would be meaningful to them.
And, I actually have known patients who had a cytoreductive nephrectomy, who really didn't change the course of their disease. They ended up dying of their disease.
But family members came back and said they were so glad that that person was able to get surgery. I think we have to add that into practice guidelines. We have to keep that component in there.
In terms of talking to patients, I think it's ... We have to make sure that they understand that the goal of systemic therapy even without surgery, is still focused on extending their life, and providing them the quality of life while they're there.
So making sure that they really understand that there's still someone fighting for them, that there's still a real effort/concerted effort, to battle that cancer. It's just using different means.
And also, I think we have to make sure that deferred nephrectomy is still something that we're considering. If systemic therapy is able to shrink disease down, patients should be told, "Hey. We still are ... There's still a possibility of debulking, of having a nephrectomy down the road. Our goal is still to have you free of disease, if at all possible."
Monty Pal: Awesome. Excellent points here. And, gosh. I've gotta say Dena, the kidney cancer community is so lucky to have such a passionate advocate like yourself. Thank you for everything that you do.
Dena Battle: Oh. Well, thank you Monty. And I have to say, the kidney cancer patient community is grateful for you, and all the work that the physicians are doing to fight for them.
Monty Pal: I so appreciate that.