Prostate Cancer Nomenclature Change: Societal and Clinical Implications "Discussion"

July 24, 2024

At the CAncer or Not Cancer: Evaluating and Reconsidering GG1 prostate cancer (CANCER-GG1?) Symposium, experts discuss the potential non-clinical implications of changing prostate cancer nomenclature. The group identifies positive outcomes such as reduced patient anxiety and costs, and potentially improved insurance access. Negative consequences could include decreased philanthropy and grant funding, reduced insurance coverage for follow-up care, and loss of "teachable moments" for lifestyle interventions.




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Speaker 1: So then there was a lot of overlap with the last two groups. So these are the nonclinical indications. We talked about the good: decreased anxiety, which has been covered, and clinical decreased costs potentially if there's an impact on the intensity of surveillance. We talked about what Howard brought up earlier, the potential that in the current state there's an impact on insurance, insurance, insurance. That goes away in the good column.

Then we started, there's some stretches that are maybe less important. Maybe they would increase access to care for others by diminishing the need for intensive care for these patients. Those are, I think, the major ones in the good column.

And on the bad side, already mentioned, the risk of decreased philanthropy—hopefully that's not that big of an issue. The risk of decreased grant funding, we just talked about that.

Potentially, an adverse impact on insurance coverage for these patients in terms of their coverage for additional MRIs or biopsies, that kind of thing. The loss of this opportunity for a teachable moment, like tobacco cessation, for example, and the possibility that this could actually drive inequities if we really get fine with how we diagnose and determine the classification of non-cancer versus cancer, if it relies on genomics or MRIs that not everybody has access to.

Speaker 2: Any questions? Is there anything anyone else wants to add?

Speaker 1: The teachable moment would be what?

Oh, the teachable moment, like a patient comes in with very good lung cancer and we have that opportunity to say, you're not going to die of this. Let me tell you the one thing that we can't help you with today, and that's your one habit.

Speaker 3: Can I ask that question? I'm just curious about this. So I think the CDC data showed that now we have 3 million men in the U.S. alone who at some time in their life have had a prostate cancer diagnosis, and this is expected to grow to something like 5 million by 2030.

My question is, do we have numbers, data? How many of these men have really suffered from complications, for example, radical prostatectomy? How many of them have, do we have numbers?

Speaker 1: Among all survivors, no, we have to try to extrapolate from the fraction of men that are in SEER, the fraction of men that are in Medicare, which is 1% basically, the fraction of men that are in the VA system, the fraction of men that are in it, and NCD doesn't really have good complications data.

And to get long-term data, it becomes very difficult because, through Medicare, men are shifting in and out of Medicare [inaudible 00:02:48] service. So if you really want to capture how many people are getting slings within 10 years of surgery, it's actually very difficult to capture. It's hard.

Speaker 3: And it probably also... it matters also how they define complications, basically.

Speaker 1: For sure, because we know there's lots of men that have terrible urinary outcomes and don't manage it. So then you have to really rely on the quality of life registries, and we've done that, captured it. There's a few, there's a range of... there's Cesar now that Dave has run. There's a range of these registries, but again, they capture a relatively small subset of men.

They all tell the same story. Same thing that PACE A was just run out—

Speaker 2: Regardless, if we can get granular on it, we'd all agree it's a really big number.

Speaker 3: Yeah, because imagine 3 million men, 50% GG-1. So 1% of that 1.5 million is still a lot.

Speaker 1: I think we could say clearly that treatment of GG1, on balance, causes far more suffering than it prevents, regardless of where the specific number lies. Whether it's 99% or 95% excess harm to benefit, it's something in that range, unless anyone disagrees with me on that point.

Speaker 4: So let's not forget this. I mean, a good few years ago, I can't remember if it was five years or 10 years ago, the estimate was about a million men had been overdiagnosed since the start of PSA screening, and nearly all of those were treated.

So a million men suffered the side effects of our treatments, and back in 1987, had we had the great pathology we have now, right? Because we're only able to have this conversation because the pathologists did their work in 2005 and worked out really what was aggressive and what was not. Had that been done in 1987 and had we called Gleason Group 6 not cancer, I don't think we would've had a million men suffering.

Speaker 2: That paper is almost 10 years old. It was Gil Welch's paper, and it was a million back then. It's way higher now.

Speaker 4: It's way more, and I think, look, it's nearly 8:00 in New York, and I'm kind of exhausted because it's Friday night, but if we're going to leave you with anything, everyone's talking about, well, maybe guys might not do active surveillance. We're talking about more than a million men suffering these terrible side effects because of our decisions. And that's what we've got to address. That's the main thing we've got to deal with right now.