Prostate Cancer Nomenclature Change: Impact on Advocacy and Patient Care "Discussion"
July 24, 2024
At the CAncer or Not Cancer: Evaluating and Reconsidering GG1 prostate cancer (CANCER-GG1?) Symposium, experts discuss the potential impacts of changing the nomenclature for low-grade prostate cancer. The group concludes that advocacy organizations are unlikely to be threatened by the change, as it may improve quality of life without affecting survival. They raise concerns about certain populations being underdiagnosed for upgrading and whether patients might be less likely to follow up if the term "cancer" is removed.
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Read the Full Video Transcript
Speaker 1: So let's go to group C.
Speaker 2: Yeah. So we agreed, well, we tried to understand the question, and the first question was, would advocacy organizations be threatened at all by the nomenclature change? And the general feeling, and I think Chuck addressed this, is no. I think their role in advocating for patients has two parts: the quality of life and survival, right? So I think everyone agrees that this is not a threat to survival and, in fact, it may improve quality of life. So I don't think anyone was concerned about that. The second question really revolves around some of the other things mentioned and to be mentioned. Obviously, if you have a pure GG1, nobody worries about the outcome. The real question is, like with the data showed, are there certain populations, like Black men, that are underdiagnosed for upgrading? And also, the issue was brought up, similar to the prior group.
Would patients be less likely to follow up if the word cancer is now gone? So from a patient advocacy point of view, would downgrading it make certain patients who might be at risk for progression less likely to follow up? And then the last point, I think I covered most of it, the last point was brought up by one of the patient advocates, Stan, about the concept of stage zero. And I hadn't thought of it. I don't think it's come up here. I think patients do understand the concept of stage more than grade, really, in a way.
And just throwing it out there, whether stage zero cancer keeps the word in there to not make it not cancer, or understanding everything that's been discussed today, but that the concept of stage zero lessens the blow and makes it clear that it's not something worrisome. So I'm just throwing it out there. I know that because I already got an email saying another person disagreed, so you're never going to get to some consensus. But I'll just throw that out there as something whether it's worth exploring or if people have ideas. So I don't know if anyone in the group has anything else to add.
Speaker 1: You talked, there were comments in the chat about funding, that it's hard enough to try to fund active surveillance research now and that if we didn't call it cancer, that what little trickle there is would dry up completely.
Speaker 2: Yeah, yeah. I don't think we did. I don't know, Howard, obviously the issues around funding in general, I do think people are concerned about it, but you're right. You have a small amount of funding already. Will it really impact it or not? Or should it actually shift to things like GG2?
Speaker 3: If you don't call it cancer, it opens up the NIDDK piggy bank too, though. I'm serious. NIDDK won't touch anything that has the word cancer. Howard will back me up on that. But if you're talking about something that's a prostate condition, suddenly NIDDK is very interested. And NCI might be interested, so it might have the opposite effect.
Speaker 2: Yeah, I doubt that.
Speaker 4: I do too.
Speaker 1: So let's go to group C.
Speaker 2: Yeah. So we agreed, well, we tried to understand the question, and the first question was, would advocacy organizations be threatened at all by the nomenclature change? And the general feeling, and I think Chuck addressed this, is no. I think their role in advocating for patients has two parts: the quality of life and survival, right? So I think everyone agrees that this is not a threat to survival and, in fact, it may improve quality of life. So I don't think anyone was concerned about that. The second question really revolves around some of the other things mentioned and to be mentioned. Obviously, if you have a pure GG1, nobody worries about the outcome. The real question is, like with the data showed, are there certain populations, like Black men, that are underdiagnosed for upgrading? And also, the issue was brought up, similar to the prior group.
Would patients be less likely to follow up if the word cancer is now gone? So from a patient advocacy point of view, would downgrading it make certain patients who might be at risk for progression less likely to follow up? And then the last point, I think I covered most of it, the last point was brought up by one of the patient advocates, Stan, about the concept of stage zero. And I hadn't thought of it. I don't think it's come up here. I think patients do understand the concept of stage more than grade, really, in a way.
And just throwing it out there, whether stage zero cancer keeps the word in there to not make it not cancer, or understanding everything that's been discussed today, but that the concept of stage zero lessens the blow and makes it clear that it's not something worrisome. So I'm just throwing it out there. I know that because I already got an email saying another person disagreed, so you're never going to get to some consensus. But I'll just throw that out there as something whether it's worth exploring or if people have ideas. So I don't know if anyone in the group has anything else to add.
Speaker 1: You talked, there were comments in the chat about funding, that it's hard enough to try to fund active surveillance research now and that if we didn't call it cancer, that what little trickle there is would dry up completely.
Speaker 2: Yeah, yeah. I don't think we did. I don't know, Howard, obviously the issues around funding in general, I do think people are concerned about it, but you're right. You have a small amount of funding already. Will it really impact it or not? Or should it actually shift to things like GG2?
Speaker 3: If you don't call it cancer, it opens up the NIDDK piggy bank too, though. I'm serious. NIDDK won't touch anything that has the word cancer. Howard will back me up on that. But if you're talking about something that's a prostate condition, suddenly NIDDK is very interested. And NCI might be interested, so it might have the opposite effect.
Speaker 2: Yeah, I doubt that.
Speaker 4: I do too.