Raising Prostate Cancer Awareness: A Q&A With ZERO

Can you tell us more about ZERO?

Tucker-Seeley: We merged with an organization called Us TOO back in October 2021, which added the support group component. Many folks in the prostate cancer world will be familiar with Us TOO because they [were] the primary prostate cancer support organization.

Being able to pull together ZERO's efforts in advocacy, and all of our education and awareness resources, with the support group infrastructure of Us TOO created a strong patient-centric organization. We are focused on increasing education, awareness and support for prostate cancer patients, providing support resources to families navigating prostate cancer, and also advocating for legislation to ensure that families have the resources they need as they're navigating their prostate cancer journey.

Editor's note: Us TOO is now part of ZERO and doesn't exist as a standalone entity.

What are a couple of things you wish people would stop believing when it comes to prostate cancer?

With any diagnosis, people are oftentimes looking for an easy answer or a quick fix. You know, "If I take this supplement or if I do this one thing, then I'm not going to get the disease." Unfortunately, our health is much more complex. On the one hand, I wish we weren't necessarily looking for that one quick fix to prevent disease, because there are very few of those things.

There was recently a study published showing that prostate cancer isn't really a disease with symptoms like there are for other conditions. For example, frequent urination could be something around an enlarged prostate and not necessarily prostate cancer. I think recognizing that there aren't clear-cut symptoms for prostate cancer, that [realization] sort of lends itself to making sure one gets screened—but not just that one gets screened.

I'm not a fan of telling people to get screened and then that's the end of the conversation, because that ignores the challenges people have with navigating our healthcare delivery system. I'm a healthcare delivery researcher and I have my own chronic conditions I'm wrestling with, and I struggle with navigating the healthcare delivery system. So if someone who, you know, has spent hours and hours researching this thing, for people who aren't steeped in it, they're going to be challenged by navigating it.

I think when we say "get screened," what we should also say is make sure you have a very close relationship with a healthcare provider who you can talk to and sort out what comes after screening. That is the coordination of care from a primary care doctor to specialty care and everything that comes with having to navigate a very disjointed healthcare delivery system.

What are a couple of facts you wish more men, in general, and Black men, in particular, were aware of when it comes to prostate cancer?

One thing I wish men were aware of is the fact that prostate cancer is so prevalent. After skin cancer, it is the most prevalent cancer diagnosed in men. I wish more men were aware of it.

For Black men, in particular, I wish we were aware of the size and scope of the disparity. I think from screening to getting treated to mortality, we have the worst outcomes of any group. Actually, it's not just for prostate cancer, it's for almost all cancers that Black men have the worst outcomes. So if I could have a magic wand and impart knowledge on more and more people, it would be to be aware of the size of this disparity and make sure we are doing something about it.

Let's go back to a few numbers you mentioned regarding Black men's likelihood of developing and dying from prostate cancer: 1.5 times more likely to be diagnosed and twice as likely to die from it.

And it's different depending on where you live. So those are generally the national numbers that get reported. In some places, it's as high as 1.8 times more likely to be diagnosed. And then in other places, it's 2.5 times more likely to die.

Research has shown that people with African ancestry have a higher probability of getting prostate cancer, and that if you have a family member who has prostate cancer, you're more likely to be diagnosed with it as well. So heritability is an important aspect of the disease.

It's not only about race. It's also about where you live and where you're able to get the care to address the needs of your cancer diagnosis as you're navigating the healthcare delivery system.

You talked a little bit about this already, but one thing that strikes me about the disease is Black men face double the risk of dying from prostate cancer even if it's low-grade when found. Why is that? And why does it seem to be so much more aggressive in that population?

I've had a couple of conversations with some physicians about this. I think the issues are multidimensional. But I think one issue is when Black men present with disease, are we presenting with disease that's at a later stage? Is it diagnosed accurately? And so there may be some issues around misclassification. That is, are Black men who are classified as low-risk disease, do they really have low-risk disease? There's some burgeoning research in that area around the classification, and also, are we getting the care we need when we need it, that is, when it is at an early stage where survival is close to 100 percent.

I think one of the challenges, sort of getting back to the statement of "just get screened," I have heard anecdotally—I have not conducted research on this—but if a man gets screened and has early-stage prostate cancer but doesn't get follow-up care after screening, and let's say he then goes back to the doctor's office many years later, that disease may have progressed.

So he didn't necessarily get the treatment that he would have gotten if he had not been lost to follow-up and gotten into the healthcare delivery system earlier. I think it's an issue of timing and access, and whether Black men are getting the care they need when they need it. That is contributing to those worse health outcomes.

OK, so access is one of the glaring disparities. I guess it's easy to think we know what that means, but what does it actually mean?

I think if we step back and think about our own interactions with the healthcare delivery system, we know where we live impacts the kind of care we get. Our neighborhoods are sorted by race, and so [it's about] the kind of care you have access to, depending on where you live and where you work, and the quality of the health insurance you have to cover the care you need. If we consider the hierarchy of where we are in the labor market, Black and brown people are generally in positions of lower pay with fewer benefits.

We saw this during the COVID pandemic. Who were our essential workers primarily, and especially, who were our service essential workers? Primarily Black and brown people. I think one of the issues related to access is whether or not people have the financial resources they need when navigating care, which is related to insurance, and then also related to access to high-quality care. In addition, we have to recognize we don't have a really good family leave policy in this country to help families manage when a family member gets diagnosed with a chronic disease and has to temporarily step away from the labor force.

So even when someone gets diagnosed, who among us has the financial resources to have that person no longer be contributing to the financial resources of the household? Or to be a caregiver or a patient? If you don't have those financial resources to fall back on following a diagnosis, you have to make hard financial choices in terms of how you are going to navigate care. This could mean delaying care, delaying treatment and putting things off in order to cover the financial needs of your household.

Does ZERO have outreach specific to the Black community? What does that entail?

Yes. I was brought on to the organization to focus specifically on the disparity black men experience, because it's so large. When we merged with Us TOO, they received a grant from Pfizer to create the Black Men's Prostate Cancer Initiative, and in my role, I have grown that to include our support group, education/awareness activities and partnership building. Our support group under this initiative is just for Black men who have been diagnosed with prostate cancer.

It's a virtual group that meets twice a month and is open to anyone in the country; it meets on Zoom. We are planning for in-person groups, with the first one slated to be in Atlanta in September to coincide with Prostate Cancer Awareness Month.

The support group is led by a licensed mental health practitioner, and we have one session per month where men can talk about anything they like. Then, for the other session, we have a guest speaker come in to discuss a topic chosen by the participating men.

Under the Black Men's Prostate Cancer Initiative, we're starting a film series focused on prostate cancer in the Black community. We're going to have an event on September 24 in Atlanta partnering with an organization called Black Health Matters. We have three films that are going to be part of the series. At the event, we'll be playing one of those films, "The Silent Killer."

We plan to work with partners to show the other two films in November in the Atlanta area. In our three-film series, we have two documentaries that depict a man's journey through the prostate cancer screening and treatment process. The other is a fictionalized depiction of two brothers who navigate [the healthcare system]; one gets screened, one doesn't get screened, and how those outcomes look different.

Let's say a generic man of the appropriate age were to say to you or to a physician, 'It's too much of a hassle to go through the screening process for prostate cancer.' What do you say to him?

Interestingly, I recently did a podcast with a survivor who said that very thing. He felt fine and for him, it's like, "Why would I get this test if I feel OK?" I think the challenge with prostate cancer is there are basically no symptoms, so we might feel fine but we could potentially have prostate cancer. So what I would say to that man is, "Is there prostate cancer in your family?" If there is, then get screened, and get screened because there are all of these heritable risk factors to getting prostate cancer, which, if detected early, is almost 100 percent survivable.

If it has spread outside of the prostate, then the survival rates are much lower. So, yeah, you want to catch it early.

Any final thoughts regarding awareness?

I think the point that I want to hit home here is it's not just about screening. It's about getting a usual source of care, making sure we're talking about the prostate now, but for Black men especially, we aren't only focusing on prostate health.

Black men have poorer outcomes for a range of chronic issues that will benefit from access to preventive care. And so having that usual source of care makes it much easier to bring up issues like, "I don't want to get a prostate screening because I feel fine." If you're saying that to a doctor you've never talked to, they might dismiss it and not follow up. But if it's someone you have a really close relationship with, they will know your family history. They know all that information. So over and above getting screened, it's very important to have a usual source of care so you have someone to talk about preventive care with, generally, and prostate cancer screening, specifically.

Unfortunately, we often lose Black men too soon to preventable health conditions, and ensuring we have a trusted source for care ensures that our lives are not prematurely cut short.