Ali Manson
Hello, Zero family. I’m Ali Manson, our Veterans Prostate Cancer Lead here at Xero and I’m joined by Paul Taylor. Paul is a zero champion, a former board member, a retired army colonel, and Paul, thank you so much for joining me today. Thank you for being a dedicated Prostate Cancer Advocate and thank you for your service.

Paul Taylor
It’s Veterans Day Week. Yeah, it’s a pleasure to be here not just with you, Ali, but with the whole zero family. Um zero has been an important part of my life since I was diagnosed with stage four Prostate Cancer back in July of twenty twelve. And so I was exposed to zero at the time I was in the military and I was restationed into the Washington DC area. I met the folks at Zero and I have been I’ve been loving my experience with the group ever since then and it’s been an important part of my journey as well. Um so, it’s important I think to give back but also the network that I’ve been exposed to of other patients and caregivers and people that care about Prostate Cancer as well as helping me increase my understanding of what’s going on medically with Zero has been not just, I think good for me but also has allowed me to be smarter about treatment decisions that I’ve made throughout course of my Prostate Cancer journey and I and I owe a lot of that to zero and so I’m I’m happy to be here with with my Zero family.

Ali Manson
Thanks, Paul. You know, your story. First of all, I’m so glad we’ve gotten our hooks in you in so many ways Um but your story reminds me why we’re so committed to working on behalf of Veterans with Prostate Cancer and that’s why we’re here today, right? We did a survey this summer of Veterans so that we could better understand their Prostate Cancer Awareness, their experiences with diagnosis, treatment, survivorship. We had over 15 500 responses from veterans in all 50 states and one of the things I think was really interesting is that we had the opportunity to ask Veterans without prostate cancer what they knew about Prostate Cancer. If their doctor had talked to them about their risk, if they’d had a PSA test or a DRE. And I really think it was one of the most promising learnings from the study. Um about 70% of veterans without prostate cancer had had a PSA or DRE and a slightly smaller number you know recognized that that was in part in fact part of a conversation of prostate cancer risk. And Paul before you were diagnosed had your doctor ever talk to you about Prostate Cancer Risk? We do know Veterans are diagnosed at a higher rate. Veterans and active duty military than the general population.

Paul Taylor
Yeah, absolutely. I mean, Veterans are actually diagnosed to double the rate of the general population in the United States. Uh which is really significant when you think about it. I don’t think we understand all the reasons for that but you know, I think the survey and the other work that we’re doing with Zero and other advocacy groups are going to help inform our way forward and hopefully figure out why that is. Um I was diagnosed I was serving on active duty and I continue to receive treatment now that I’m retired from from the army but yeah, noone and and I even had a family history. Uh my father has prostate cancer but it was just one of those things that we never talked about, right? And I think he had very, he was under active surveillance, right? Uh he has very slow moving prostate cancer. He’ll probably never have to worry about it in his lifetime. So, it’s not something that was ever discussed. It probably should have been and so when I went to the doctor Um you know, the only reason that I found out about my prostate cancer was because I was in the military and at the time, when you turned forty, they made everyone do a PSA check. Um now, I wish that was that way for the normal population as well because if I had not had that blood work done, I would not have found out that my PSA was 22 at the time which is extremely elevated and I wouldn’t have been able to take action and and the reality even finding out about it at that point my my cancer was still medic was already metastatic. So, you know, early testing is better. I wish that we, you know, most people were in the situation where when they turned 40, they could get a PSA check or even thought about it but I had no idea. It was just something that my doctor did at the time and then, even then,
it was hard to have a discussion Um at the place where I was first treated and diagnosed, I wasn’t given good information. In fact, and as I got smarter about this disease that I had just been diagnosed with, I realized that that was not a place I wanted to be. I wanted to be somewhere where the doctor was more interactive. Uh the care to hold care team was more interactive with not just me but my wife as well and where we can evaluate all of the options that were available to me. So, I left and I got a second opinion and I found a place that is more comfortable with that took a more active role in educating where I could ask all the questions that I needed to ask and they were a little bit more patient with me. Um but that that was my journey but you’re right. I think that a lot of people have similar similar circumstances where they don’t talk about it. growing up. They don’t talk about the risk with their doctor. Uh even before they’re diagnosed.

Ali Manson
And even at diagnosis sometimes men still have difficulty communicating with their care team about what the true risk is involved. Uh with a Prostate Cancer Diagnosis. and you know, what we found in the survey was that veterans who didn’t have prostate cancer were more likely to report talking to their doctors about risk than those who’d already been diagnosed. Which I think is interesting and if we’re lucky, we’ll, that reflects changing mores, right? That people who are diagnosed earlier and have already been through prostate cancer, their doctors weren’t talking as much but now, doctors are. If we’re not lucky, it’s just a fluke can help people are reporting but We do have further analysis going on to better understand some of that. Um and I said though that about 70% of veterans without prostate cancer had a prostate cancer screening. That means 30% didn’t. Right? So 70% is a very low D, right? Um about 80% of those who were diagnosed with prostate cancer were diagnosed like you were, Paul, during a routine screening, right? They didn’t have symptoms. They didn’t know. And so we’re thinking about the 30% of veterans who aren’t having any sort of prostate cancer screening. They almost surely have some cases in there, right? That would be discovered through more routine screening.

Paul Taylor
Noone should ever end up like me. That’s the goal, right? The goal is to discover prostate cancer before it becomes metastatic because guess what? Prostate cancer is very curable. Uh when you find it in a tendency. Um but you know, if there’s no routine testing, if there’s no discussion with men about the risk so that you can inform that discussion and understand that, listen, a PSA test it’s just a little bit invasive because they have to stick a needle in your arm and get some blood. Um but I would much rather have regular PSHX and understand what my status was and establish a baseline early on. Then wind up in a situation like me or many, many, many men who are diagnosed with metastatic prostate cancer. Because at that point, the world is changing. Uh I was diagnosed 10 years ago and you know, I’ve been very fortunate, very lucky, very blessed to have responded well to treatment but the reality is that getting diagnosed with stage four prostate cancer is still a very dangerous situation for men and if we can avoid that through early testing, it seems like a no-brainer to me.

Ali Manson
Here, here. You know, I think there, that’s definitely true. I also think we got some heartening things out of the survey, right? Most veterans with prostate cancer reported reasonable levels of satisfaction with their care journey and that held true whether they were inside or outside of the VA which I also think is pretty good, right? It means we’re going to seem pretty comfortable care on both sides. Um it was only a 75% average satisfaction rate. So, again, we can talk about whether that’s room for improvement but maybe we should talk about room for improvement a little bit. You’ve had access to a number of, I think, innovative treatment options, but in general, among veterans, some of the more newer, higher tech, more precision medicine oriented options have very low uptake.

Paul Taylor
Yeah, it’s unfortunate. Um I was diagnosed in like I said in in 2012 and around that time there had been several new treatments that were just approved And so the treatment world is really changing. Well, in the last nine or so years, since I was diagnosed, it’s continued to change very quickly and and the reality is that there are a lot of very good trials out there. Uh trials are not scary. People think that, you know, if you go to a trial, then, you’re, you’re not, you know, if you’re part of a controlled population, you’re not going to receive treatment and that might be dangerous. There’s there’s this thought there that you’re you’re running a risk but the reality is that most most trials either receive standard of care which you would be receiving anyhow more
than likely. Or whatever the the whatever the new form of treatment is that they’re testing against the standard of care. So I would encourage just like I encourage discussions of early testing for all men. Once you’re diagnosed I would encourage you to be very aggressive with your care team discussing clinical trial options. Um I always advocate too. There’s lots of good treatment facilities across the country that you can go to. Um and certainly, availing yourself of treatment within the VA system or a military medical facility or any good facility but generally, you know, there are some facilities that are actually participating in research and trials. Those are good facilities for people to be at. Not just Veterans but anyone with Prostate Cancer because you’re going to be able to access those trials a little bit easier. But your doctor should be able to give you that advice as well. And even if you end up having to travel a little bit, why not take advantage of it? Um if there’s no risk to you, I’ve known people that have remarkable results because of trials that they participated in. It’s not always going to be that way. Um but if you’re not running another risk, why not take advantage of the trial system but most a lot of people do not and it’s unfortunate. Well, I think a lot of people, their doctors don’t even bring it up, right? I think and even if your doctor brings it up, you may not be eligible, right? Clinical trials typically have very specific parameters for who’s a candidate but there’s no harm in finding out, right? And having that conversation with your doctor and asking if it’s a a possibility. I, I, I’ve always been a big advocate and I’ve been fortunate ever since after that first incident that I have. I’ve been successfully found doctors and care teams that have indulged me a little bit, right? Because I like to be informed. I like to do my own research. Zero helps me do that, right? Any of the other organizations that we partner with and Zero, the Prostate Cancer Foundation, right? BPCA, there’s a, there’s a lot of groups out there. You can do a lot of good in educating yourself and then, you can go to your doctor armed with information to ask them about. Instead of saying, hey, what’s up with trials, right? You can say, you know, listen for for my type of cancer, for my stage of cancer, these are some of the trials that I researched that might be available to me, can you comment on them, and can you tell me whether you think that they would be good in my situation or not?

Ali Manson
And you know, I think we did see in the survey that among veterans with prostate cancer, those patient groups you mentioned were some of the best sources of information for them. There are others but, you know, and there are some plain language summaries of medical journals. There are some other online patient resources but those patient education groups that also tend to have support services incorporated or support groups and kind of build communities and networks. Those really do seem to be some of the best tools for patients to use Yeah, we have that available at zero, right? If you are really, if you’re aprostate cancer patient or a caregiver and frustrated about which direction you should go or even where to go to find good information, then, you can contact Zero and Zero has a network of peers who can reach out to them. I’m one of them
for zero. Um and you know, where you can talk to other men or caregivers and get good advice or get pointed in the right direction. Um for some that’s been there, right? Uhhas walked the same journey as you. That Veterans are great at that, right?

Paul Taylor
Veterans you know, Veterans are are like one big family, right? So, it’s sort of a family within a family even. I love my zero family but the brotherhood of Arms and Veterans across the
country take great pride in helping other veterans and you know, I think that there are people that you should be talking to to get some advice and figure out where how to walk this journey. You don’t have to do it by yourself.

Ali Manson
And you know, that’s, I think Paul, you’re a mentor in our mentor program which also has a
caregiver and mentor program alongside it. We also have support groups and some of the
support groups are located at military bases and specifically work with active duty military
or veterans. Um we also have, you know, some supports that can help you deal with the very
real life logistical implementations of dealing with prostate cancer, right? People in the survey reported financial barriers. They reported problems getting a second opinion, figuring out how to use their insurance, all of that stuff is the kind of thing that our 0360 program can really help provide people with 360 degree patient support for the the nuts and bolts of life, right? That might be put on hold. Navigating TriCare, right? Um or the VA system is something that, you know, if you don’t, if you don’t have another source of advice, call zero. connect with someone like me who can point you in the right direction.

Paul Taylor
Um I think the thing is, you know, don’t try to do it yourself. You know, don’t just get on Google and start trying to research because there’s a lot of information out there and frankly, you know, like anything, there’s good information and there’s bad information and I think that organizations like Zero can really help a lot and in I’m a personal example of that, right? Because I who was involved with zero early on in my after diagnosis and my treatment regimen the whole time and and I have availed myself of those opportunities through Xero and surrounded myself with people that have have been in this fight for even longer than I
have and it’s it’s great for me emotionally but it’s also great for me just in terms of understanding
the resources that are available to me and the treatment options for sure.

Ali Manson
You know, Paul, you have been a really great advocate, I think, for your own care, right? You made choices, you’ve changed doctors when you needed to, you pivoted, and 64 percent of our survey respondents said theywouldn’t change anything about their treatment journey. And the things that people tended to, say they would change, kind of related to getting more information, right? Did they know enough to understand their treatment options and I think more importantly, the implications of those treatment options, right? What the side effects might be, what they might expect for success, Um that kind of thing. And then the other category was bedside planner. I think that was the other single biggest piece that people would have changed about their journeys. Um and in the end it we’re talking about people who didn’t feel like their care team gave them the information or empathy they needed. Um they couldn’t find a second opinion. And that’s really important I think for most people. And It was interesting. I was speaking to a veteran recently who suggested there might be an element or two of military culture at play here, right? The idea that you don’t question a superior officer and your doctor in many ways, here is your superior officer and secondly, the idea of bootstrapping, right? You don’t complain, you just get through it, move on, and I admire the concept, but it probably doesn’t serve you all that well in getting the treatments and support you need.
And I think that that there’s something in your experience that really speaks to that, Paul. I mean, you really did go in and. solve problems and when they weren’t being solvedappropriately, you came up with a plan B and you moved on it. You know, I think that’s right. Um you know, sixty-four, first of all, I’m encouraged that 64% have had a positive experience with their guarantee. Um you know, that that’s, you know, there’s a lot of work to do but that’s a good number. Um you know, because we’re doing some things with Zero and other epic secrets designed to, you know, prove that experience with the VA, with other providers and veterans and that’s part of the reason why we did the survey was we want to find out where the gaps are so that we can continue to improve care. We’re regardless of where veterans are treated. But 64% is a is a pretty good number. But I do agree that there’s there is an element to military culture.
Uh, that where people don’t ask for help. Uh, where, you know, people think that they can go it alone, right?

Paul Taylor
And you know, I think You know, one, you know, vets are strong people. They can rise above that. Um I could see some of that in myself. Um one of one of the things that I’m personally very
appreciative of is that, you know, I had my wife, right? Who could smack me on the back of the head from time to time and say, you know, if she saw that impulse in me, right? No, we’re going, we’re going to go do this. We’re going to go, we’re going to ask that question again to the doctor because I’m not really sure we like that answer or we are going to go for a second opinion, some
place else, right? Because oh by the way, your insurance covers that. Not a lot of people realize that, right? Um you know, if if you you don’t have necessarily on a spouse or someone close there, you know, a support group can provide a lot of that you know, that wrap around, right? That support that can encourage you to sort of get outside of that rigidity that sometimes with the the, you know, military service, the mentality that goes along with that. Other vets, right? Talk to other vets. That’s why it’s super helpful as we reach out to the broader zero family and all the people that they know is we want, you know, we want new people in our fold, right? We want new champions. We want people who we want veterans. We want their caregivers. We want their family members. Um we want People that know them to come into the fold of this great big advocacy family that we have. Um because we’re going to pull down some of those walls, right? When we do that. Um just through, you know all of the support and love and concern that comes from being part of a larger entity here. you know and we want people to get involved. I want, I’m dying to have more people involved in our Veterans efforts. So, you know, visit Zero Cancer.org slash Veterans Um send an Email to Veterans at Zero Cancer.org and we can help figure out how we can serve you. We can help empower you to serve the rest of the Veterans community. With that things, we get that, we got things we can do for you, we’ve got things you can do for other vets of the Prostate Cancer So, please don’t hesitate to reach out. We’re happy to have a conversation about all of these things. Um thank you so much Paul for your time today.

Ali Manson
Thank you. Uh thank thank you to everybody watching. Um we’ve got we’re going to have a wet and deep dive webinar on this topic in later later in December. And I hope you all join us again.
We’ll go into all of the statistics and details. Do reach out to us if you’re interested in getting involved. And we’re going to drop a link in the chat right now. Um you can sign a petition today. It takes less than 30 seconds to support legislation improve Prostate Cancer Care for Veterans. It’s really easy. Paul’s been working on this all along and it’s a small thing you can do at this exact moment as part of the team. We’re making progress. Come help us.

Paul Taylor
That’s, you know, the message I would leave with y’all. Uh Veterans are Veterans and their families and their caregivers or doers, right? That’s the one thing that I know about this
community and you know, we want you to come help, help us change this equation, right? Get the word out, advocate, so that we can, you know, we can see a world where you know, we cure Prostate Cancer and you know, even if we don’t cure it, we find it early enough so that it’s not a a you know, it’s not a problem for men, right? They can live their whole life with prostate cancer as opposed to worrying worrying about all the things that come with a poor diagnosis. So, you know, come help us. Uh It’s great. Zero is an awesome organization and we’d be happy to have you.

Ali Manson
We’re here to end prostate cancer, right? We are here to end prostate cancer and we need your help in the fight. So, thank you Paul for your service. Thank you to all of our veterans who are watching for their service on tomorrow is Veterans Day. We hope you’ll take advantage of the opportunity to say thank you and also to tell a veteran. Tell em about their possible risk for Prostate Cancer. Tell em what they ought to know. Tell them how to take care of themselves. Share the information and then come back and hang out with us. Do some more. Thank you and have a great afternoon.

Watch the video interview at: https://bit.ly/3FY25oA