182: Finding Purpose After a Male Breast Cancer Diagnosis

Scot: Today, it's one of my favorite episodes, when we get some men talking to other men about health. And that's what we're going to be doing today. Our guest is Chris Gregg. He's a PhD in neurobiology and also a breast cancer survivor.

Mitch: Oh, wow.

Scot: So we talked about this topic back in Episode 114 with Dr. Matt Covington. He's a cancer specialist. And we talked a little bit about the disease, why men are less likely to seek treatment until it's too late, and some of the guy reasons why screening rates are so low among men even when guys know that there might be something going on.

This is "Who Cares About Men's Health," where we bring you information, inspiration, and a different interpretation of men's health. My name is Scot. I bring the BS. With me is our men's health convert, Producer Mitch.

Mitch: Hey, there.

Scot: And our guest today, very stoked to have Chris on the show, who I mentioned earlier is a PhD in neurobiology, which is going to be the center of a couple of questions, but more importantly a breast cancer survivor. Chris, welcome to the show.

Dr. Gregg: Thank you. Thanks for the chance to talk about all of this.

Scot: I'm going to jump into the hard question first. What was the most difficult part of your male breast cancer experience? I mean, we talked about this before and we can speculate about what guys think and feel about it and we have some ideas, but I want to hear what it was for you.

Dr. Gregg: Yeah. So I think any time a patient gets a cancer diagnosis, whether it's Stage I, II, III, or IV, it kind of stops your heart. It's something that you hear about happening to everybody else, but it's hard to believe that it happened to you on that day. So it's traumatic. There's no question about it.

And part of the trauma of being a male breast cancer patient is that there are only 2,000 to 3,000 of us diagnosed every year. It's 1% of all cases, so it's very rare. And that means that we don't fit into any of the care models. There are no clinical trials going on to discover the best treatments for men with that disease. And that means there are no clinical trials that you can get involved in to take advantage of the sort of state-of-the-art, and to some degree, you're kind of left figuring that out yourself.

Mitch: Something to kind of talk about is if there isn't an infrastructure set up for you and your condition, you've got to kind of advocate for yourself. You have to kind of be the person who does the legwork, and that's a whole extra level on top of being a cancer survivor.

Dr. Gregg: It is tough. There's no question. And I think to some degree that's the experience of every patient, is that they should be their own advocate. They need to be out there figuring out second opinions. There's so much going on in the cancer space it's very difficult to understand what's important to pay attention to, what is nonsense, what's useful for you.

And the only way to get through all of that noise is literally to talk to a lot of people. So that was the process for me and I think it's the process, or should be the process, for most patients.

Scot: I wouldn't imagine that most men think, "What if I get cancer or what kind of cancer might I have?" unless maybe, I guess, you have a family history you might think that.

But on your scorecard, as far as getting cancer, was breast cancer ever in your top five of what you might have speculated you would have gotten?

Dr. Gregg: No, it was definitely not on the list. Of all the cancers I was hoping for, it was very low.

Scot: Sure.

Dr. Gregg: Now, funny enough, it's turned out to be a blessing. And the reason is that because of all of the financial support that's gone into researching breast cancer in women, there are a lot of treatments.

And so compared to many other cancers that one might get, it turns out that having breast cancer is a pretty good one to have because there are so many treatments. There's a lot known about the disease in women, and I can kind of piggyback on that. So it turned out to be fortuitous even though it's weird.

Scot: Unexpected, weird.

Dr. Gregg: Very.

Scot: How did you get that diagnosis? I mean, did you notice a lump? Was it during a checkup and a routine? What happened?

Dr. Gregg: It first came up when I was a postdoctoral fellow at Harvard and I was just working super hard, not paying any attention to my health, and one morning I woke up and my nipple was bleeding.

Scot: Oh, man. What?

Dr. Gregg: And I was like, "What the hell? What the hell is this?"

Scot: "Boy, that stress is real."

Mitch: That's what I was going to say.

Dr. Gregg: It is. It'll make your nipples bleed, man. I was ready to just put a band-aid over it and carry on.

Scot: "I've got things to do."

Mitch: That's what I was going to say. One of the things that we came across when we were talking, and research has kind of shown it, is that men are more likely to underplay their own medical experience. And so you hear these stories of men finding a grapefruit-sized lump and being like, "Eh, I'll get it checked out later." Did you seriously consider putting a band-aid over a thing that should not be bleeding?

Dr. Gregg: Oh, yeah. One hundred percent, and just carry on. Probably had meetings I needed to get to, whatever.

Scot: Okay. So that actually happened. You put a band-aid on a bleeding nipple.

Dr. Gregg: And then my wife was like, "That is insufficient care right there." So she ended up making an appointment for me at the doctor. I went in thinking this will be in and out really quick.

Scot: Really? So what was the spiel going to be when you show up and the doctor comes in? Were you just like, "Hey, my nipple was bleeding. Can you fix it?"

Dr. Gregg: Exactly. That was exactly it. "What is going on here? Nipple is bleeding. Anything to be concerned about?" And they . . .

Mitch: I'm sorry. I don't mean to laugh at your cancer diagnosis, but there is something about . . . Oh, man, I could kind of see myself doing the same thing, unfortunately.

Scot: "Doc, my head exploded. Is that a problem?"

Dr. Gregg: "Is that going to be fixable today?"

Scot: All right. So you go in, you tell the doctor you've got a bleeding nipple. Where did you go from there?

Dr. Gregg: So the next step was they found a lump underneath it, and that led to more questions, and that led to biopsies. So that was the next step, was to get a biopsy.

Scot: All right. Somewhere in between, though, they said, "We suspect you might have breast cancer." I mean, what was your reaction to that?

Dr. Gregg: Well, to be honest, I don't think anybody suspected that because it's so rare in men. It was just like, "Hey, there's a funny lump here. Let's go see what that is."

Maybe they had that in their mind that this could be some kind of malignancy, but they didn't express it to me at all at the time. They were just like, "Let's go have a look at this."

Then it really did start to go off the rails a little bit because I was in there getting all these needles into my lump, and the fellow who was doing the scans there just kept going on and on. He's like, "I've never seen anything like this before, and I don't know what this is."

Scot: Oh, that's not helpful to your mental state.

Dr. Gregg: So he took a whole bunch of extra samples because he was just flummoxed. And then it came back that there were weird cells and I had what's called a papilloma, which is a benign tumor, and then underneath of it I had a carcinoma, which is a scary malignancy. And so I had this combination.

It was the papilloma that was bleeding. If I had not had a papilloma, I would not have noticed it. So it would have completely carried on really without me . . . it would have been a grapefruit before I noticed it.

Scot: So what I'm hearing here is, ironically, the bloody nipple was not the problem. The thing that caused that actually wasn't an issue necessarily.

Dr. Gregg: You're exactly right. So kind of lucky. And then I was referred to a surgeon. The surgeon cut out the lump. And at the time, it had been diagnosed as Stage I, which means that the disease is meant to be entirely within the breast and has not spread to the neighboring lymph nodes or beyond. And that surgery was done really quick. I was kicked out into the real world.

Now, the way this would be done for a woman normally is they would have been put on a drug called tamoxifen for five years. And in case the disease had spread, the tamoxifen would help to substantially reduce the risk of it recurring. Because I was a male, presumably, people didn't know what they were dealing with, I did not get that. I just got surgery and, "You're good now."

Scot: Was that because they didn't know to do that, or is it because as a man we would have a different reaction to it than a woman that would be not good?

Dr. Gregg: I think it's the man versus woman thing, because it's absolute standard of care to give tamoxifen for five years after diagnosis.

Scot: Okay. To women, but you didn't get it.

Dr. Gregg: To women.

Scot: Did you ask at the time, "Should I be getting this?" or did you not know at the time?

Dr. Gregg: I didn't know. At that stage, I was a neurobiologist. Cancer, I didn't know anything about it at all really. And the surgeon sort of said, "It hasn't spread. We cut the lump out. You're good." So there was no reason to think more about it.

Scot: I feel like this is some foreshadowing.

Dr. Gregg: Yeah, a little bit of foreshadowing here. It's all in the storytelling process. So, in 2018, I started having back pains and hip pains and all kinds of problems and went to some doctors. I was getting physio and just couldn't get better, couldn't figure out what was going on. Ultimately, I ended up getting an MRI for my back and got a call on Saturday morning that said, "Chris, there's a big tumor in your hip."

Scot: Oh, man.

Dr. Gregg: And then to add injury to insult, they said, "We've looked back at some of the scans you've got, X-rays and things over the past several years, and the tumor and disease was visible in those. We didn't catch it." So it had been kind of growing and spreading for many years.

And then, ultimately, pathologists that are experts at the Huntsman Cancer Institute went back and analyzed the pathology slides that had been taken from that fellow who was injecting me with needles like crazy, and they determined that the original diagnosis was erroneous. It was not Stage I. It had actually already spread in 2010.

Mitch: Oh, no.

Dr. Gregg: And then, of course, I didn't get tamoxifen. So there were all kinds of missteps that ultimately led to this becoming a Stage IV diagnosis, which is what it was, and is, in 2018, which is a terminal illness with no chance to cure. So it's a difficult story, but the story is not over either. So there are lots of interesting twists and turns beyond that.

Scot: So am I understanding correctly that you have a terminal diagnosis? You received a terminal diagnosis in 2018.

Dr. Gregg: That's correct. So the median overall survival for my disease is three-ish years, three to four years.

Scot: And that was 2018. It's 2024. So you're six years in now.

Dr. Gregg: Yeah.

Scot: I mean, your general demeanor and attitude and everything is amazing. This story took a turn I didn't expect. How do you maintain that?

Dr. Gregg: Yeah. So let's talk about that because it's a pretty bizarre story. I was stuck in this position as a male breast cancer patient where there were no clinical trials and my options were pretty limited. And I had published a paper earlier in 2018 on why elephants don't get cancer.

Scot: Oh, I remember this.

Dr. Gregg: Well, I'm not the only one. So Josh Schiffman is the real, I would say, leader in that particular area, but I had published a paper and Josh is a co-author on that paper. So there was some irony that I had just published the secret to not getting cancer and then I got cancer.

Mitch: Is the secret being an elephant?

Dr. Gregg: Yeah, that turns out to be a difficult solution. So, at any rate, the point is just that having published that with Josh, I suddenly had a network of experts in the oncology field, even though I'm a neurobiologist, that I could reach. And I reached out to folks who I had found their papers.

And some of the story here is that my oncologist said, "Chris, the disease is terminal and I don't really expect any big miracle cures on the horizon. I think the real solution for cancer care will be using the drugs that we have in a smarter way."

So rather than sifting through to try to find some miracle cure, I just started to work on the problem of "How do we use the drugs we have in a smarter way?" And it led me to a group of mathematical oncologists at the Moffitt Cancer Center who had been using lessons from ecology and evolution, which is an area I was studying with the elephants and other species. They have been using those models to understand how cancer evolves treatment resistance.

For many patients, their first therapies work very effectively. What happens is that the disease evolves and changes and becomes resistant to the drug. And when it becomes resistant, you are able to now switch to a new medication, and the insurance company will cover that. You'll say, "I've shown progression on this drug, so will you please cover the next drug?" If there is one, depending on your disease.

They'll cover the next drug, you go on it, it works pretty well, and then you eventually, again, evolve resistance to that drug. It happens a few more times until the oncologist runs out of drugs to treat you with, and essentially, they lose control of the disease, and the patient dies.

You can see that in the standard of care, the real problem to solve isn't necessarily finding a treatment. It's preventing the disease from becoming resistant to that treatment. And these fellows had built mathematical models of how you might use drugs to prevent treatment resistance from developing.

And God bless the Huntsman Cancer Center. They gave me some money to put on a symposium in 2019, just a few months after I'd been diagnosed. I invited these folks to give a symposium on how we would treat metastatic cancer more effectively with the drugs we have using these lessons from ecology and evolution.

And Bob Gatenby, Joel Brown, Sandy Anderson, and others had attended. These are extraordinary people, very close friends now. And they have proposed a couple of different solutions. One was instead of waiting for your disease to evolve resistance to your treatment, what if you switch treatments much earlier before the resistance happens? And then you can just keep striking at the disease by rotating through different medicines.

Scot: And then cycle back through those original ones again. Is that what I'm hearing?

Dr. Gregg: That's exactly right. So there's a really fun background to that solution, which sounds pretty logical. It's that that's how the farming community prevents pest resistance from evolving to pesticides.

Scot: They rotate.

Dr. Gregg: So they have the same problem. And they have what are called pesticide resistance management plans where they have rules in the agricultural community that you have to be constantly rotating so you don't use the same chemical class of pesticide continuously until resistance. You rotate.

It's required in the agricultural community to have these plans, and it made logical sense to try to lift that into the oncology space.

So we put a plan together for me that would do that. And over the past several years, I've rotated over 15 different treatments. I've only shown progression on one of those treatments, which means that the treatment resistance management plan for controlling my disease appears to have worked.

Now, I'm just an N of one patient. And there's an effort to run a broader clinical trial using a revised and better approach than what I did. We've learned a lot, and we'll hope that that works out well. But so far, this is showing promise for me.

So there are other components to this solution. One is that in addition to rotating pesticides from different chemical classes, farmers will use their chemicals only when their monitoring of the pest population in their fields shows that they need to apply it. So they never apply the pesticide chronically to try to eliminate the pest population, because if you do that, you always get a resistant population of pests that ultimately comes back and destroys everything.

We don't do that in oncology. And so I'm trying that strategy out as kind of the lab mouse. Every Friday, I go in and I get labs taken that measure the burden of my disease and we adapt the care accordingly. So that means the dose of the drug and whether I'm on-drug or off-drug.

And we are not at this stage trying to eliminate the cancer from my body. We are trying to prevent it from ever becoming resistant to my treatments so that it's just a chronically manageable disease for decades.

Scot: So you control it. You can never necessarily get rid of all the insects in the field, but you try to control it so they don't . . .

Mitch: They don't take over.

Scot: . . . have an impact on the crop.

Dr. Gregg: You got it exactly. So you just try to knock the disease down to a level that the symptoms are tolerable, or ideally no symptoms, and then you just control it at that level.

And the third prong of the attack is that you're really trying to minimize the amount of drug that you use. The more drug you use, the higher the risk for the disease evolving resistance.

And so I experiment a lot with metabolic approaches to prevent the cancer from . . . or at least slow the cancer's growth so I can use less drug. And again, the farmers were ahead of us. They do the same types of things where they have strategies for growing the crops and rotating the crops and changing the environment that are not based on the chemicals.

That's essential to use non-chemical-based strategies to control pests to help reduce resistance. So we can just steal from what the farmers have used potentially to build treatment resistance management plans for patients.

Scot: So I asked you earlier, how do you maintain this great attitude and this great general demeanor? And you told us that story. Pull it all together. I mean, I would imagine that story is a sense of purpose for you. I don't know. I feel like you were the right person in the right place at the right time that got a horrible disease. But because of your background in neurobiology, because of your . . .

Dr. Gregg: Scot, I greatly appreciate that.

Scot: I'm just sitting here thinking I could get a diagnosis of breast cancer and find out it's terminal and what would happen as a result of it. I'd be grouchy about it. You get it, and what happens as a result of it? Well, that's what we've been talking about for the past 20, 25 minutes.

So I think it's just absolutely amazing how you've taken your experience, your expertise, some connections, some fortuitous connections, and have really made a difference in the health of so many people. Do you ever think about that?

Dr. Gregg: Fellas, I am very grateful that you gave me a chance to tell this story today. Thank you for that. There's a large number of people involved. And I'll just say that the support that I've gotten from the community in Utah and at the University of Utah and the Huntsman Cancer Center has been amazing.

So a lot of the motivation and the positivity that I'm able to garner comes from people cheering me on. It means a lot. Making things possible and just being super supportive to get stuff done.

Scot: And we talk about that. Men tend not to take support well when we end up getting sick. A lot of guys can just kind of turn into themselves. They don't look for support. They don't ask for support. Sounds like that's been pretty crucial to your journey.

Dr. Gregg: I think that one of the most devastating things for men that get diagnosed with these diseases is they lose control. Suddenly the doctor has all of the control over what drugs they're allowed to take, what their outcome is going to be. They take care of everything, what scans you're going to get, whether you're going to get radiation, when you're going to get radiation. And you kind of lose purpose.

And if you feel sick, boy, you really lose purpose. So being so lucky as to have a purpose through this whole thing has been a real blessing.

Scot: Have you talked to other men as to what their purposes are? Because I think of your purpose and I'm like, "Well, I'm never going to have that purpose." But I guess family, being there for your family is a purpose for a lot of guys?

Dr. Gregg: I think that's a big one. Whatever that means, getting financial infrastructure in place for your kids when you're gone, making sure everybody is on a good track, and has learned the lessons you want to share with them before you're gone.

Scot: Well, who's that professor? I think Randy Pausch was his name. His book, "The Last Lecture," did that. So I guess what I'm hearing here is if you're a guy, maybe you need to identify what that purpose is and just make that the sole focus of what's going on. That could be super important, it sounds like.

Dr. Gregg: I think it's very important, yeah. It keeps you feeling useful and empowered.

Scot: Yeah, I bet. So when we come back to this idea of male breast cancer, the diagnosis, I don't know if there's anything you could have done differently. Not that I guess we should ever look at it that way, but I'm trying to think of lessons that we could take away from this diagnosis for other guys.

I mean, you had the symptom. Your wife made the phone call. Maybe you could have done that. Maybe that would have been . . . I don't know how long you waited until afterwards. Did you wait a long time?

Dr. Gregg: I think there is a lesson, to be honest. I had a lump there for a long time, probably years. So for a woman, if she found a lump in her breast, she'd go into the doctor right away. It would get addressed immediately. Men aren't checking. And if you do find a lump, you'd be like, "Huh, I got a lump."

Mitch: Right.

Scot: I think we all raised our hands. That's how we would respond.

Dr. Gregg: So if you've got a lump, get it checked.

Scot: Right. Got something going on, get it checked. I know it can sometimes be time-consuming. Sometimes we don't want to. We don't want to admit weakness, but get that checked.

Any other thoughts or takeaways for our listeners as we wrap this up with your experience with disease or male breast cancer in particular?

Dr. Gregg: Yeah. I know people when they hear this story, they want to know more about it. And I put together a masterclass. It's entirely free. It's called Uncharted Health. So if folks Google "Uncharted Health cancer patient masterclass," you can learn more about this perspective on evolution, ecology, and cancer and how it changes treatment.

Scot: That's incredible.

Mitch: Yeah, and we'll make sure to put one in the . . . for listeners, we'll put it in the show notes.

Dr. Gregg: Thanks, guys.

Scot: Mitch, any takeaways or thoughts as we wrap this up? What did you get out of this conversation? Because men talking to men about health, hopefully, we're all getting something out of it.

Mitch: Well, I guess it's really hard for me to see . . . A lot of times when you hear people's cancer stories, they talk about this long . . . They kind of get sucked into a system and they suddenly feel like they're a completely different person, etc. And it's really quite cool to hear someone who just . . . not to belittle, but it felt like there was a pivot, right? It was, "All right. Let's see what other types of scholarly, academic . . . What kind of investigation can I do?"

And that's just it. It's the importance of a purpose. I think even if you aren't dealing with a terminal condition or something, finding purpose in your life really does help. I mean, it really resonated with me that you've got to find that regardless of your situation.

Scot: And it sounds to me, Chris, that that's how you dealt with it, right? You got this diagnosis. It was like, "All right. What can I do to fix it?" You said a little bit earlier we feel like we lose control, and it was maybe your way of taking control. Is that accurate, or am I off?

Dr. Gregg: That is exactly what my therapist says. So you're right on.

Scot: Sure.

Mitch: They're so wise, really.

Dr. Gregg: They are. Yeah, they know. So there we go.

Scot: Very cool. Well, thank you so much for sharing your story with us and giving us some great things to think about and some great resources. I can't tell you how much I'm rooting for you that you continue to discover these great things, not only for your benefit, but for the benefit of health of men and everybody in the world. So thank you. Thank you for just not giving up and pushing on and being you. It's just incredible, Chris. It's been an honor to talk to you.

Dr. Gregg: Thank you, guys. You're really fun. This has been a blast to get to do this. Thank you very much.

Scot: Well, thanks for listening. And if you have any thoughts, stories you'd like to share, reflections on the episode, if it made you think something a little differently than what it made us think, we would love to hear from you. You can email hello@thescoperadio.com.

I'd like to thank our guest, Chris, for being on with his incredible story. And thank you for caring about men's health.