[00:00:00] Adam Walker: From Susan G Komen, this is Real Pink, exploring real stories, struggles and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room.
Understanding your family health history can help you take better care of your health by helping to figure out your risk and take action as needed. Joining us on the show today is Jerry Carnes, a former television journalist who spent 35 years at 11 alive in Atlanta. He has an extensive family history of cancer in his family, has lost multiple family members to both breast and prostate cancers and as a prostate cancer survivor himself.
Jerry is here today to share his story and to spread education on the importance of knowing your family history and taking charge of your health by getting regular screenings and promoting early detection. His hope is that by sharing his family’s experience, he can help to prevent other families from going through a similar situation.
Jerry, we’re so grateful to have you on the show with us and sharing your story. Welcome to the show.
[00:01:08] Jerry Carnes: Thank you, Adam. I appreciate you having me. This is such an important issue. It’s been a part of my life, my entire life. Talk about family history, my early memories are of losing family members to cancer.
And so I think it is so important to inform people and let them know there’s a lot of things that they can do to protect themselves. And even more than that, spreading awareness throughout other family members and friends and so forth. Thank, you so much for having me.
[00:01:38] Adam Walker: No, thank you. And, let’s dive into that. You mentioned an extensive family history. What is your cancer family history and how has it impacted your family?
[00:01:49] Jerry Carnes: My earliest memories, as I mentioned, are of losing an aunt to breast cancer. Unfortunately, it was a very aggressive form of breast cancer that moved into her brain.
I was a toddler when that happened. This is my father’s sister. Not long after that, I was eight years old, I lost my grandfather to colon cancer. And I was too young to really understand that cancer was taking my family members at the time. And, then I was in college when I lost another aunt, my, another one of my past sisters.
He had five sisters, all five of them had one form of cancer or another, four of them passed away from, cancer. Again, I lost my grandfather to colon cancer, but the biggest blow came, when my sister was diagnosed. She was 39 years old when she was diagnosed with breast cancer. She battled it for 15 years.
It came and went. She, had a lumpectomy. It came back at her breastbone twice and then came back a fourth time, in her liver and she passed away in 2017. In the middle of all that, I had my own prostate cancer, situation. I don’t know what else to call it. It was, it was so easy. Compared to what the others went through.
2008, I was diagnosed in August and then in November I had surgery. And that was that I’ve had tests since then. And I’ve been completely cancer free. So I got off easy. I got to say, and, as good as that is for me, it has caused some stress because I didn’t go through what they went through, but yeah, the cancer in my family has been something that has made me uniquely aware maybe of just the impact of cancer on a family.
[00:03:42] Adam Walker: Yeah, so talk a little bit more about that. Like you mentioned the stress, maybe even like the survivor’s guilt that you’ve experienced. And then also like the, larger, there’s a larger emotional component to this. the cancers have this huge emotional impact on your family.
Can you talk a little bit about both of those things?
[00:03:58] Jerry Carnes: I was, surprised at what grief did to me. I was prepared for some grief, but I was not prepared for how it could sneak up on you at times when you least expect it. The guilt, I was totally unprepared for. And, it came on me, pretty, strong.
For one thing, as I mentioned, I. I got off easy. I think I got off easy anyway. when you’ve only had cancer, diagnosis in August, surgery in November, all done with it. I never felt like I had cancer. I never felt sick. On the other hand, I watched both my father and my sister deteriorate. And it was a, it was an extremely hard thing to watch.
I was with my dad a week before he passed away. He couldn’t communicate any longer. He was just in bed and there was both, I could tell, physical and emotional, mental distress going on. He knew the end was near. Yeah. Same, similar situation with my sister. I was at home one day and I knew Nancy’s situation.
She was down in Titusville, Florida, me here in Atlanta. And one day I was just pacing around the house and my wife was, what is wrong with you? And I said, I don’t know. I just can’t get Nancy off my mind. And she said, let’s just fly you down to Florida. You need to go see her. And I did. And I was there 24 hours before she passed away.
And I was there by her bedside, holding her hand when- Yeah, it’s amazing how God just reached down and told me and my wife, this is, it’s time, to go be with her. So watching them suffer and my sister, oh my goodness, she, the cancer got into her stomach and her poor husband was having to go through, draining this fluid off of her that was just so hard to watch.
And Nancy was just so again, in that physical and mental distress, knowing her time was up. And then to watch that and realize how easy I got off. There was just a lot of guilt there. I just went, I’m like, why me? Why did I not suffer like they suffer? just so possibly that’s why I talk about this so much because I talking about it is good therapy.
[00:06:18] Adam Walker: Yeah, no, for sure. Sure. Yeah.
[00:06:20] Jerry Carnes: And it, I feel like prepares other people for just in case you’re ever in this situation, you’re not alone. I, feel like I am a living example of the fact that you can survive cancer. I’m also at the same time, a living example of dealing with losing loved ones.
And, just what you need to prepare for. You need to prepare for some guilt, even if you haven’t been through cancer and they have, you there’s still some guilt there. There’s some guilt. Oh, on my part over conversations I never had with my dad and things like that. And, I tried to have those conversations at the end, when he couldn’t communicate back to me and I just was, Oh, I waited too late.
And, so I think it’s important for everyone to know that, it’s okay to feel that way. It’s natural to feel that way. Yeah, it’s normal. Yeah. and, talking about it is good therapy.
[00:07:18] Adam Walker: That’s right. That’s right. Yeah. And it’s good for us to hear your story as well. And it helps make more people aware.
So related to being aware, given your family history of cancer, both breast and prostate, did any medical providers ever mentioned the connection between breast and prostate cancer? And did they, say anything to you about any of that?
[00:07:42] Jerry Carnes: Surprisingly they didn’t. And my diagnosis was 15 years ago.
A lot has changed since then. I think the conversations are different than they were back then. But, my urologist wanted to know my family history, but never really mentioned breast cancer, at least not in my mind. Now, keep in mind, I was distracted. My wife
listened way better than I did and she asked way better questions than I did back during that time period. So I got to give her credit. She was much more attuned to what I needed and what I needed to know. But there was really no mention of the connection between those cancers. Of course, I’m here, I’m going through it the same time my father is.
My sister has breast cancer, so it should have been a question I asked back then. And I think maybe the lesson to learn from that is to ask questions. And if you’re a guy, bring your wife with you. Because she’ll ask better questions.
[00:08:46] Adam Walker: Bring the detail part. You want the detailed person in the room, right?
That’s the thing.
[00:08:50] Jerry Carnes: Exactly. And I don’t know, in my experience, I think women talk more about it. I think men are hesitant, especially when it comes to prostate cancer, to discussing what’s going on with them, it’s that dirty little secret where I’ve found that women are way more open to discussing it, what they’re experiencing.
And, talking about it to friends and family and, keeping in mind, I want you to know what I’m going through because this is helpful to you, men just don’t want to do that. And so I look back and I wish that I had asked questions back then, that I think to ask now. So if there’s something to take from that, it’s that I would hope that.
People would ask those questions now when they’re going to get yearly physicals, which I hope everyone is doing, and getting those screenings that are so vital and asking questions, that need to be asked.
[00:09:48] Adam Walker: That’s right. Yeah, that’s right. So, again, given the family history, do you know if any family members have received genetic testing and if they’ve tested positive for the BRCA mutation?
[00:09:58] Jerry Carnes: Yeah, I, so my wife suggested I get tested for the BRCA gene and my sister did, the one who passed away from cancer. She got, she was tested. She wanted to know for the sake of her two daughters and she tested positive, which made sense. So much breast cancer in the family. And my wife said, I think you need to get tested.
And I was told her, I don’t think there’s a need. I’ve got so much cancer in my family. I’ve had cancer myself. I think the answer is yes. Why do I need to get tested? And Katie being the wise one in the family said, let’s find out for sure. Yeah, I got the testing. The geneticist calls me and says, you’re clear on everything we tested you for.
I can’t remember having 15, 16 forms of cancer, and you’re clear on all of them. And I went, wait, I think you’ve got the wrong person here. She said, No, you are. You’re clear. You do not have the BRCA gene. I don’t know what to make of that, but I have since learned that, one of my nieces has been tested and tested negative as well.
And then another niece, my sister’s daughter, who just got married this past weekend, she tested negative as well. It’s, a, I don’t know, that’s unexplainable to me. I think what it says is genetic testing is important, but it’s not the only thing.
[00:11:22] Adam Walker: It’s probably good to know either way, right? Like you were assuming one thing, you were assuming a negative result.
Really, you got a positive result. Exactly. Which is, yeah. So it’s good. And, did doctors recommend that you get tested or was this like totally, your wife was like, you’ve got to go.
[00:11:39] Jerry Carnes: It was more of a, Hey, you, should look into this kind of thing from my doctors. It was a, no, you’re going to get tested from my wife.
[00:11:48] Adam Walker: You should consider this from, yeah, that’s, doctor speak for, you should go do this right now.
[00:11:56] Jerry Carnes: And again, twice as the smart one. Because I could have just skipped doing it all together and made assumptions and that’s just never a smart approach to make assumptions. I think knowing is way better, which is why I, push for screenings because you don’t want to assume I, again, I never felt sick when I had prostate cancer.
So I could have just assumed I’m perfectly well, no problem. I don’t have any issues. And yet I had cancer lurking inside of my little walnut sized gland called the prostate. And, I never would have known it was there had it not been for those screenings.
[00:12:34] Adam Walker: Yeah. Yeah. it’s great that you’ve got those screenings.
So it’s absolutely so important. All right. So, you mentioned your niece that just got married, when we were first setting up this interview, you were heading out to your niece’s wedding, which I’m sure was, emotional without your sister there. I’d love to hear a little bit about that.
And also, I know you were going to take that opportunity to gather, more family member information, as well, for the benefit of your family. So I wonder if you could just share about that experience and what it was like gathering family information and how all that went.
[00:13:09] Jerry Carnes: The, it was a wonderful gathering. This is my sister who I lost in 2017, her youngest, and, it was just an exciting time for the whole entire, I don’t think our family has come together like that. Oh, in quite a while. We’re just all so scattered. So it was a really great experience to get together.
And we did talk some about the genetic testing element. And so my sister, Nancy has two daughters, Hallie, her youngest is the one who got married and then Macy is, a little bit older than Hallie. Macy has not gotten the genetic testing yet. And again, we’re back to that assumption thing. And I it, it wasn’t a setting for me to scold Macy and-
[00:13:55] Adam Walker: Certainly not.
[00:13:56] Jerry Carnes: But in my mind, I’m going, Macy, go get tested. Please, and so that was the nice thing is that even though we didn’t do in depth discussions about that. It did put it to the front of mind and Nancy was a presence there at that wedding, which was really important. I did a toast on her behalf, and told my niece just how proud her mom would be of her.
And they all know, they all know that Nancy was there. and it was, a good time to have some discussions about Nancy and about what we need to do. All of us to protect ourselves. I have, of course, Robert, who, my son is, even though I’m BRCA negative, that’s not to me, he is still going to go get tested early.
There’s still a family history, father and grandfather, who both had prostate cancer. He’s going, not too early. He’s only 35, but he will, he’ll, he’s going to start getting tested earlier than most men would because of our history.
[00:15:01] Adam Walker: Yeah.
[00:15:02] Jerry Carnes: And so that’s the kind of things that we could discuss at the wedding. And, really the first opportunity in a while to really do that and the timing of this with that kind of prompted us to have those discussions, which was great. I mean we need to have them and everybody needs to stay on guard in a family with so much cancer and it can’t you know, it’s been since 2017 since we lost Nancy, Fortunately haven’t lost anybody else since then but the discussion needs to still be there we can’t just put it aside and go, good.
We haven’t lost anybody else in a long time. We don’t need to talk about this anymore. We absolutely, so that’s that, that in the Carnes family, that’s going to stay, that’s going to stay a part of the discussion.
[00:15:43] Adam Walker: That’s great. That’s great. Now, you just mentioned this, but I wonder if you’d elaborate on it a bit more.
So obviously you’ve had cancer, your, data, lots of cancer has impacted your family directly. Have you taken any additional precautionary measures for your health and has the rest of your family? You mentioned Robert’s going to get proactively tested early. Are there any other precautionary measures that you’re taking as well?
[00:16:06] Jerry Carnes: I think just, it’s mainly been focused on, diet has been a big part of it. And I’ve got a daughter who is just really, she has, she’s been on the forefront of that. She’s really been the leader in terms of, pushing diet as a way to stay healthy, which, I’m, not nearly as conscious of that as she is.
And she, so she, has really focused.
[00:16:29] Adam Walker: Any specific tips related to diet? Because I’m, real interested. What, do you have?
[00:16:36] Jerry Carnes: She just has really pushed, more vegetable based diets and, less processed food, which she’s done. Caroline was a nurse, until she decided to stay home and raise her children, which I admire.
Great. So she’s done a lot of research and really knows, about how to cut out a lot of the processed foods. She’s cut out a lot of the sugars and that kind of
thing. But while since my diagnosis for prostate cancer, I’ve come to learn that there is a very low instance of prostate cancer in Asian countries where they eat a very, vegetable based diet.
And I think there’s a correlation. I think a lot of people have reached the conclusion. diet has been a big part of it, but mainly everyone in my family knows that they are to go get their yearly physicals. It’s not just about cancer. It’s about everything. And I, push screenings all the time because I just think it’d be like driving a car without ever getting an oil change and without ever getting a tune up if you’re not, you take your car. Or if you’re a tune up, why not take your body in for a tune up? And, it’s I love it. Yeah. That, that, that’s You wouldn’t do that. You wouldn’t just drive the car and go, I think my car is okay until you hear it clunking and then go, Oh, you want to get to the clunk before it happens.
So that’s how my family has approached it. And my wife has been vigilant about mammograms. My daughter’s had been, Robert gets his yearly physicals and we, talk about it again. This is a talking family. We, discuss these things and that’s great.
[00:18:20] Adam Walker: That’s great.
[00:18:21] Jerry Carnes: It is, conversations that we have quite frequently again, not just about cancer, but just about health in general.
[00:18:27] Adam Walker: That’s right. You might be, I think you’re definitely the first guest on this show that has ever correctly equated like you, do maintenance on your car. You should probably do it on yourself. That’s such a great analogy though. Like I just never, I never really would have thought of it that way, but you’re totally right.
Like, why, would you not do that?
[00:18:47] Jerry Carnes: Yeah, you want your car to run as long as possible. You want your body to run as long as possible.
[00:18:53] Adam Walker: And we all know like the way to make your car run as long as possible is to proactively. Do maintenance on it. And so like, why would we not like that?
[00:19:02] Jerry Carnes: Particularly with prostate cancer.
I’ve heard from men who are resistant. Because they say, if I find out I have it, I might overreact. Goodness. That, no, you’d rather go around not knowing.
[00:19:15] Adam Walker: Yeah. Better to overreact than underreact that thing.
[00:19:18] Jerry Carnes: That’s not the act at all. Exactly. So I’ve, I shake my head and then I have
rational, calm conversations with him about it. And, eventually I think, I even, unfortunately, it’s not an unfortunate story. Actually, he got treated, but I ran track at the university of Georgia and one of my former teammates reached out to me and said, Hey, I’ve got a high PSA.
What do I do? PSA is the prostate, specific antigen test that you take to determine, the possible presence of cancer. And I gave him some guidance and found out that this guy that I ran track with had not been going to get yearly physicals. And despite all the talking I’ve done about it, there are still people out there who need to hear the message.
And that is that there is nothing harmful about going to the doctor once a year and getting a checkup. It is a good thing to smart thing.
[00:20:10] Adam Walker: That’s right. That’s right. Yeah. A hundred percent. Totally agree. Man, Jerry, this has been great. do you have any final advice for our listeners on how to self advocate for themselves or for their families?
[00:20:25] Jerry Carnes: I just, think that it is very important not to take just one approach. Know your family history, but don’t assume anything. If there’s no cancer in your family, don’t assume that you can’t be a target. Genetic testing, if it’s necessary. I think that’s a conversation that would be good.
If you’ve got family history, then do you take that next step and get that genetic testing? It was good information for me, and I’m not saying it’s for everybody, but I think it would be very good for a lot of people to know those who have family history, just knowledge, arm yourself with knowledge.
If, you, if your father or grandfather had prostate cancer, your, mother or grandmother had prostate cancer, breast cancer, learn what that means for you. Go and talk to the people who know. And the last thing I’d say is that cancer is survivable. I’m, a living example of it. It doesn’t have to be a death sentence.
I’ll quickly just tell you that my situation was that I got a screening. My PSA was very low. And in fact, it was at a level where, you wouldn’t normally get
concerned, but it had jumped enough to where my physicians, I had physicians who were aware of these things. They said, you need to follow up on this, particularly if your father has prostate cancer.
I went and got a biopsy. Had I just written it off as. My PSA is low. I’ve got nothing to worry about. I would have again missed it. So it’s just, it’s, you need to take a multifaceted approach. Arm yourself with knowledge, testing. And, both of those, and, if you have any questions, then ask those questions.
Don’t assume anything. I could have assumed with a low PSA, I didn’t have cancer. I would have been wrong. I assumed that I had the BRCA gene. I was wrong. I’ve been wrong about a lot of these things. Men, take your wives with you. They’re smarter than us. They just are, and they’ll ask the right questions.
[00:22:26] Adam Walker: That’s right. They will ask the right questions. Mine would ask the right questions for sure. yeah. Yeah. No, that’s great. Jerry, that’s great advice. I really appreciate you, coming on the show, being, just being vulnerable about your family history and your own personal history. And just, really appreciate all that you’ve shared with us today.
[00:22:43] Jerry Carnes: Thank you. Thank you for allowing me to share. It’s, again, it’s good therapy for me to talk about it. And I just hope it does someone some good out there. I hope that it’s triggered something. And someone who will say, I’ve, been letting this go. Maybe it’s time for me to pay attention to this.
It’s for sure.
[00:23:01] Adam Walker: Time to pay attention. That’s right. Yes. If you’re listening, it’s for sure time to pay attention. Now’s the time. Thank you to Johnson and Johnson for supporting the Real Pink Podcast. For more information about Johnson and Johnson Oncology, please visit their website at innovativemedicine.jnj. com. To learn more about genetic testing in prostate cancer and to find the resources you need to talk to your doctor or support your loved one to stay on top of prostate help visit BRCAinmen.com.
Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit realpink.komen.org. And for more on breast cancer, visit komen.org. Make sure to check out @Susan GKoman on social media. I’m your host, Adam. You can find me on Twitter @AJ Walker, or on my blog, AdamJWalker.com.