How Can You Get Better Bladder Cancer Care?

Lisa Hatfield:

Dr. Hasan, what are the next steps in addressing the disparities you’ve identified in bladder cancer diagnosis and management? And how can patients be involved in this process? And also, are there any specific resources or support systems available for patients who may be at a higher risk of delayed diagnosis or treatment disparities?

Dr. Shaakir Hasan:

Really good questions. So I think I’m going to start with the last question here. So, are there specific resources or support systems? So, there are, but I would actually tell you that before you kind of attach yourself, align yourself with any particular support group, I would actually advocate researching your own condition as much as possible, and then let that guide you to a certain group. So, let’s just take bladder cancer, for instance. I would first just hop on Google again, just say, you know, bladder cancer treatments, bladder cancer staging, kind of find out where you are, what’s available to you. And then at that point, you might say, okay, a bladder preservation support group, or if you’re African American, and there are issues with access, there’s like, the Black Health Coalition, is an organization that we’ve worked with that’s good, but that might not be most appropriate for you.

If you’re in a different part of the country. There might be other parts of the country that have certain support groups that work for you and some that don’t. So, what I would actually recommend first is to really, again, do as much education, educate yourself as much as possible on your condition on what’s available. And then from there, you should be able to find appropriate support groups that can be most appropriate for you. I would say one underutilized aspect of every clinic that I’ve been to, are patient support groups, as social work, there might be a stigma associated with this. People just might be afraid to ask about it. But you would be surprised. There’s actually a lot of resources within every clinic you go to that can direct you to the right place.

So don’t be afraid to ask, if you have this diagnosis, you’re going through it, do not be afraid to ask what is out there to help me get through the situation and you’d be surprised at how much it can help. The other question you asked was, kind of the next steps in addressing the disparities. And that’s again, probably a policy question that’s hard for me to address here, but I do think, probably not relying on the government, probably not relying on policy changes is probably the best thing you can do as an individual. So, as I say, educate yourself and advocate for yourself is the best thing you can do on an individual level that can hopefully kind of accumulate, and then more broadly give us better results. And I do think as a policy matter, we again, we have to emphasize primary care, and we have to emphasize getting everyone access to very basic checkups and try to initially discover what might be wrong.

I think beyond that, certainly we have to normalize and, you know, very much, I think we know this, but we have to implement, for every…we should, maybe we should do some internal analyses. And every Black patient that comes in with blood in the urine as a complaint, the amount of workup that follows up with that patient needs to be the exact same as any white patient that comes in with the same complaint, right? And if you do these metrics internally, and they’re not up to par and you see a disparity, you need to address that, you know? So that’s something that I would suggest at each institution.

So, I think, please trust me. Please trust me when I tell you, you are not offending anyone, when you advocate for yourself, when you ask for additional testing, when you ask for additional help, I think most clinicians will look at the situation and go, the appropriate response is, oh, well, you know what? I didn’t really think about that. But we can certainly explore this further if you like. That’s by far what you’re going to get. In the event that you do find someone dismissive that goes, eh, you don’t need that. They don’t, they just kind of dismiss you. Probably not the best provider for you. If you do have someone that, and I’ve certainly had a situation where someone would want something that was just totally out of, just inappropriate. It didn’t make any sense.

I would take the time to say, look, that’s a good thought, but here’s why I wouldn’t do that. And this is why specifically wouldn’t help you. But if someone’s not taking the time to do that and address your concerns, then that’s, I personally wouldn’t continue with that provider. So, A, just don’t be afraid of that. And then the second part of that, ask about all the resources available. It’s not just a physician. There are plenty of experts, a nurse navigator, a social worker. And a lot of clinics and they have a lot of resources for support groups and things beyond just the clinic, which is what the physician’s good at. But there’s a lot of, you know, social aspects of this too that we’re not experts in, and we can certainly use the help. So please don’t be afraid to ask about that either. You’d be surprised at how much help you might get.