Don’t Give Up on Testicular Cancer

From a Mom - When Will Sons and Husbands Talk about Their Balls? - Episode #16

February 22, 2021 The Max Mallory Foundation - Joyce Lofstrom host Season 1 Episode 16
Don’t Give Up on Testicular Cancer
From a Mom - When Will Sons and Husbands Talk about Their Balls? - Episode #16
Show Notes Transcript

Karen McWhirt lost her son Ian at age 20 to testicular cancer. At Ian’s request, she wrote a book so that other young men could avoid this cancer, check their balls, and talk about their health. Now, mothers, wives, partners, and so many people wonder when this conversation will begin. 

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From a Mom – When Will Sons and Husbands Talk about Their Balls?

Episode 16, Feb. 22, 2021

Joyce Lofstrom 

Hi, this is Joyce, and welcome to Don't Give Up on Testicular Cancer, a podcast from the Max Mallory Foundation. I'm Joyce Lofstrom, your host, a young adult cancer survivor, and Max Mallory's mom. In this upcoming episode, I wanted to tell you a little bit about what we're doing. I'm talking with a mother who lost her son to testicular cancer, and she talks about her son's journey, as outlined in a book that she wrote.


I wanted to just tell listeners to take a moment to really listen to what she says and what we 

talk about because there's a recurring theme that I think is part of anyone's journey in testicular cancer, and that's being comfortable talking about your health, especially young men and adolescents. 


And just to set the stage for this discussion early, here we are in 2021.


Here are some statistics for testicular cancer from the American Cancer Society. So, in this current year, 2021, there are about 1,470 new cases of testicular cancer that will be diagnosed. Out of that number, about 440 men will die from this disease. It's not a common cancer. One out of every 250 males will develop testicular cancer sometime in their lifetime.


The average age is 33. Although both Karen, my guest, and our sons were much younger, 19 and 22, respectively. About 6% of testicular cancers occur in children and teens, and 8% appear in men over the age of 55. The other statistic that I find interesting that again relates to what we will be talking about is that the risk of dying is very low according to the American Cancer Society, one in 5,000.


So, what does this all mean as we start our podcast? Just think about the theme I mentioned of men being comfortable talking about their health, talking about something unusual in their health, something unusual in their testicles. So, I will stop right now, and we'll get into our discussion. 


Hi, this is Joyce, and thank you for joining me today on Don't Give Up on Testicular Cancer.


On the podcast with me, today is Karen McWhirt.  Karen is an author and a testicular cancer awareness advocate. She's also a mom who lost her son to testicular cancer. So, Karen's with me today as two moms who have similar experiences losing their sons to this disease. We're just going to talk about our experiences and other topics as they come along.


Karen, I'm so glad you could join me today. 


Karen McWhirt

Joyce, thank you. And thank you for that lovely introduction. I'm so happy to be here with you today and talk about testicular cancer and Ian's story and Max's story, and Together We Will Win. The title of the book is Ian's cancer-fighting motto. So, together as we're doing this and with all the other guests that you have together, we will win eventually.


Joyce Lofstrom 

I hope. I agree. I was going to say, why don't you go ahead and start with where you'd like to begin with Ian's story?


Karen McWhirt

Okay, sure. First, I kind of would like to say that Together We Will Win is available on all major book online booksellers if anybody wants to read it. And all royalties, although they may not be much, are used for a cancer charity.


So, you know, there's a lot to be learned from Ian's book. So, I'd like just to put that little item out there. 


Joyce Lofstrom 

I agree. I read the book. It's outstanding. And so, I would second what you just said in terms of reading it and learning what Ian went through and what many young men go through in this battle.


Karen McWhirt

So, thank you. Ian's story begins in 2004, and like many cancer patients, they ignore symptoms for a while. They wait, they deny, they procrastinate, and then Ian was no different. He did the same thing. You know, for testicular cancer. A guy often finds a problem, a lump, or a swelling, and they don't want to tell anyone that there might be something wrong in that area.


Even if they might feel that there might be something wrong, sometimes they don't even want to admit it to themselves. And so, I mean, this was Ian's case, I believe and, and I think you had, one of your guests touched on that, you know. One point that he made, maybe not in the interview, but in one of his videos, Justin Birckbichler.


I don't know how to say his last name. He said that guys are; we teach our young men not to pay attention to their (health). So, I think that would be a good point for us to discuss a little bit later that, you know, we're kind of programming our young men to just, don't, don't worry about it: Don't, don't pay attention to your health because you have to be tough. 


Joyce Lofstrom

That's correct. 


Karen McWhirt

You know, so, yeah. So anyway, Ian is living the life of a 19-year-old, you know, he's a junior in college. He had a full-time job, was a musician, as you know, a songwriter, guitarist, vocalist, and he's playing in his own band, and also with another, and they're playing in local venues around Kansas City every weekend.


And you know, he's just living life. He's having the time of his life really getting his dreams off the ground. And even though he did live at home with us, you know, we rarely saw him because he was always on the go. And, you know, he appeared to be a completely healthy young man. You would never know by looking at him that that cancer was silently creeping around inside.


He did have symptoms that none of us recognized at the time, and because he was 19 and able to take care of himself, he was. Self-medicating for the symptoms that he had. Okay. And, you know, stomach aches, coughing, aches and pains, nothing alarming, really. He would just take over-the-counter medications on his own.


And he had allergies. I have allergies, so it's not unusual to think, you know, for a persistent cough, you don't think that much of it because we have allergies. So, I don't know. Even though these were symptoms of testicular cancer, no one knew it because we didn't know how much he was suffering, and he didn't tell us.


He just took care of it. But, he did eventually develop a severe cough, and he saw his doctor for that. And the doctor suspected some kind of gastrological problem because he coughed a lot every time he ate food. That, I bet, didn't lead us to any answers really for a while because Ian never told anybody about the lump that he had in his testicle.


And he also had a lump in his left breast, which he also told no one about, and not even me. He did go to the doctor for that on his own, but he refused to tell me why he went to the doctor. This was probably about six months before his diagnosis. He, you know, he said he was embarrassed about it. He didn't want anyone to know.


He didn't want me to know. He insisted, when I asked him about it, that the doctor told him it was nothing to worry about and that it was normal. And you know, Ian, he was adamant; he did not want to talk with me about it. So, he paid the doctor’s bill, and I never saw the bill. I never saw anything about it.


And you know, I kind of thought if he was embarrassed to tell me about it, it maybe was an STD or, you know, something about his private anatomy that he just maybe was embarrassed about or something. Something sexual. And I just thought, well, you know, he's trying to be a grownup and take care of it on his own.


So, I tried to respect his privacy, but later, later after his diagnosis, we learned that this was a swollen lymph node caused by the spreading cancer. 


Joyce Lofstrom

Really? Okay. 


Karen McWhirt

So, I hadn't been aware of that in terms of a symptom. Well, I don't know if it's very common or not, but that's what Ian's oncologist had told him, you know, once they, he was in KU, and his 

oncologist was really angry when Ian told him that the other doctor had just written off Ian's concern of that lump. It was pretty upsetting. But, you know, that was just another, another step. 


So, you know, but so here we have a 19-year-old boy. He has a severe cough and a breast lump, and he's been to two different doctors, and no one has asked him if he has a lump in his 

testicle. No one has asked him if he's had any nausea or pain in his lower back or, you know, other cancer-related problems, and he hasn't said anything about the testicle lump and nobody's thinking about cancer. The cough was concerning. 


So, while we're still looking for answers on the cough, Ian and I happen to be in a minor car 

accident, just a fender bender. He got rear-ended while we were sitting in traffic. You know, after this car accident, Ian started complaining about his back hurting a lot, and we went to get x-rays and that it didn't show any, you know, no damage. And I think he was given Motrin for the pain. 


And over the next week or two, the pain persisted, but he was still going to, he was still attending school and still trying to keep up his nightlife on the weekends. And so, in appearances, you know, you just didn't know he was suffering, and he didn't tell anybody. 


Then one day he was so sick that he couldn't even stay at work. And now, he had never missed a day of work, so that was alarming. And when he left work that night, his boss called me 

before Ian got home, and she told me that he had been looking sick for several days and she'd been trying to get him to go to the doctor. And she had sent him home that night. And her name was Gina. She was great. She and Ian had a great relationship, and you know, she cared about him, and she had been trying to get him to go to the doctor, you know.


I don't know. That's the sad thing about being a mom eventually, your kids grow up and go away, and you don't get to see them anymore, and the rest of the world gets to spend more time with them than you do. So, you know, she was seeing him every day for eight hours a day, and I was lucky if I got to see him come home and change clothes to go out again.


Joyce Lofstrom

Right, right. I know how it is too. Yeah. 


Karen McWhirt

Yeah. It's kind of a bummer, but, well, you know, you got to let your kids grow. So, but the next day, I mean, he had, we'd spent that (time) together at home. 

And he never, he didn't go out anywhere. And the next day, his stomach started hurting so bad that he couldn't stand up or lie still.


Joyce Lofstrom

Oh my, wow. 


Karen McWhirt

So bad that he asked to drive to the doctor because he didn't even think he could drive a car. You know, that was the same doctor that was looking for gastronomical issues, and he still couldn't find any reason for Ian's pain. So, he prescribed a C-A-T for that afternoon. And as you know from reading the book, that's where Ian's testicular cancer journey begins.


You know, even though it actually started with the lump in his testicle, probably about 2003, oh my, that lump. So, a year. So, all of this transpired for about a year and a half before being diagnosed.  because he didn't say anything, you know, and the thought of cancer hadn't even entered my head. I mean, I was thinking the doctor was going to tell me he had a bad ulcer or some kind of, you know, digestive blockage.


And so, I called Ian's doctor the next morning, first thing in the morning. Oh gosh. And I, you know, I guess we can all remember the day you learn about cancer, and I don't know, I think learning about your children's cancer is probably worse than hearing about your own. I, I don't know. I've never had it.


I can still hear Ian, his doctor's voice, today in my mind. I can still hear. I, I just stood frozen in shock, holding my phone to my ear, listening to him telling me this horrifying news, you know? And he didn't sugarcoat it. He did. He wasn't fluffy or kind, I mean, polite or anything. 


He just said, Karen, your son has cancer, and he has a large tumor in his stomach, and he has eight tumors in his liver, and he has 20 or more tumors in his lungs, and probably there's a tumor in his testicle, and I think he most likely has spread to his brain as well.


And I literally stopped breathing as he was talking. I, I just stood there frozen, and I couldn't take in any air, and I, I couldn't speak. And then I started gasping and sobbing, and I just crumpled to the floor. Suddenly, I just I tried to catch myself on a chair, but my legs buckled under me, and I just fell. I did manage to catch myself with one hand, but I kept the phone to my ear cuz I wasn't going to let go of this doctor. But I was, I mean, I tried to crawl across the floor on my knees with one hand and, and I'm pleading with him on the phone and, and I was trying to stand up.


Well, my legs wouldn't work as if I was like a marionette puppet. I tried to climb back up, but I, I couldn't stand. All I can remember saying is, no, no, no. Every time he would say something, I would say, no. No, not Ian. No, it can't be true. There has to be a mistake. No. 

And of course, I was crying uncontrollably at that point and barely able to function, but there on my knees.


But Ian didn't hear any. Fortunately, I think that would've been traumatic for him to hear that. So, actually, I was at a friend's house about five or 10 minutes away, maybe. I had gone over there early in the morning and called from her house, and her name was Angela, called her my angel.


She helped to stabilize me, you know, to get me breathing again. And she gave me some water and talked to me. I don't think that is part of the book. My editor said it wouldn't work, but yeah, she was there for me and helped me to figure out how I'm going to tell my son this news. You know, I, I wasn't able to tell him.


I went home and I looked in his blue eyes, you know, I woke him up and he, I, I tried so hard to say, the doctor thinks you have cancer. And I, it just wouldn't come out. I just, I wanted just, you know, trying not to cry, and I just, I couldn't tell him, so I just told him we have to go to the hospital.


And, anyway, to skip through that whole part of the story. Initially, eventually, Ian was admitted to the cancer unit at the University of Kansas Hospital. And officially diagnosed, and he had already had the orchiectomy to remove the right testicle, and the tissue was sent for biopsy. And the staging was done within a couple of days.


And eventually, we learned that he had a non-seminoma germ cell tumor. What is the N S G C T? 


Joyce Lofstrom 

Yeah. I always have to remember the name. 


Karen McWhirt

Yeah, I can remember the words. Not so, I can't remember the acronym. Yeah, they write acronyms, so we remember the words, but I'm kind of backward that way. I have to remember the words, or I can't remember the acronym.


Joyce Lofstrom 

Right? That's okay. Yeah, whatever works. Right.


Karen McWhirt

He had this N S G C T and stage 3B, which is not good news. It was 95% embryonal and carcinoma and then 5% choriocarcinoma. You know, those are heavy hitters. Those are fast-growing aggressive cancers, and I don't know; this might be my weird sense of humor.


I'm kind of off; I don't know. Well, we are talking balls anyway. So, it just interests me that, you know, guys are so proud of that part of their anatomy.  You know, you have big balls; you have to have. You know, that's your masculinity and cancer that is part of, that part of the body is the biggest badass cancer of all cancers.


That's it's a; it's a killer. That's, that's a correlation I find a little, I don't know. Humorous, I guess. I mean, yes, as we've seen by others, you know, references about testicular cancers and check your balls, guys, and those kinds of…


Joyce Lofstrom

Yeah, you're right. 


Karen McWhirt

So, yeah. So, yeah, your balls can kill you.


That's how bad they are. So anyway, after a few days later, the MR and MRI showed that there were indeed two small lesions in the end, the brain at the occipital lobe. That was when, you know, when he was diagnosed, when we learned that testicular cancer is the most common cancer in guys his age and that it's curable.


So, we were relieved to know that it wasn't necessarily a death sentence, but we were also.  just out of our minds that it's the most common cancer in young men, and nobody's talking about it. Correct? I mean, how many doctors did we see in the course of 19 years with Ian for flu and colds and, you know, tonsils and who knows what, and nobody, not one doctor, said, you should probably check your testicles once a month.


Here's some, here's some information. Here's a pamphlet. At the very least, but nobody. Nobody really kind of knows about it. So that's when we started talking about it to everybody we knew. And I can remember standing in Ian's hospital room looking out the window. I was on the fourth floor of KU, and I could see the city for miles and miles.


I wanted to climb onto the top of the highest building and just yell out and shout in all directions. Check your balls. Check your balls. It's 12 o'clock, and all is not well. Yeah, check your balls. But yeah, we just, I mean, that's pretty much all we did at first was just talking about it. 


Eventually, we, well, after Ian's fight was over, that's when I started really getting busy with 

trying to, you know, create awareness and talk about it. I started on social media, which back then was MySpace. This is 2004. There wasn't everything we have now. Facebook was just a baby. CDs. Music CDs were still a thing, which they're kind of gone, you know, defunct now. But he had this demo CD for the band so he could get gigs.


His band and he had already had that recorded. He had done some guest spots on a friend's radio program, 810, Studio 810, with Bob Duer, I think, and Matt O'Connor. And they had figured out a way to get him in the studio to record all his music on their equipment. So, he was able to have the CD, and I'm so grateful that we have that.


But I thought, well, what better way to get this information about testicular cancer into the hands of young people is to put it on the music CD. They buy the music, and then they get to see on the insert all the information about testicular cancer, how to check, and what to look for.


And so, we did that for a while and tried to promote that on social media. And that's where I actually where I met Mike Craycraft, who was one of your guests on your podcast. And I met Philly Morris and Darren Couchman online. Of course, they're in the UK trying to create awareness for the disease.


And a bunch of survivors, John and Noah, and all the guys that ended up endorsing the book, Together, We Will Win, were these guys. They were my first people that I connected with. You know, when I started kind of reaching out on social media to try to create awareness, so they were all there for me.


And then, yeah, we just kind of went from there, and I wasn't sure I was ready to write the book. I didn't know I could relive that story, but eventually, I got strong enough to do it. And then, I did some public speaking and, you know, fundraising and health fairs and all that. Oh, and there was a theater performance of Ian's book in Topeka, Kansas, at Topeka High School.


I remembered that you had the other guest of yours who wrote a musical about his experience. So, that was the Topeka High School actors and actresses. That was a phenomenal show. They did Ian's story, and they did some cancer poetry. In the midst of that, it was, that was really good.


So, all of this was done in an effort to get people talking about testicular cancer because it can kill a guy in two years, you know? 


Joyce Lofstrom

Yes, I do. 


Karen McWhirt

It just, it's so fast-growing, you know. So, checking once a year isn't really enough. A guy has to check every month, and I mean, I guess to bring it full circle, Ian had noticed a lump, he said, in 

his high school year, just after the football season. So that would be his senior year. So that would be 2003, roughly, maybe January 2003. So, maybe to January 2004. It was allowed to grow for a solid year because he never said anything. And then late spring 2004, he starts developing symptoms.


By the summer of 2004, his symptoms are getting worse, and by the fall of 2004, symptoms are so bad they can no longer be ignored. And then, he was finally diagnosed, so, you know. One of Ian's radiation oncologists had told me once, just, you know, in comparison, testicular cancer, because it grows so fast, people aren't usually, they're not prepared for that aggressive cancer because colon cancer, for instance, can take up to five years to metastasize from the colon.


Karen McWhirt

I mean, not necessarily always does, but it's slower growing. Lung cancer takes, can take five years before it metastasizes, but testicular cancer, as you know, it's just like wildfire. And so, you know, we just try to get people talking about it and, and I, I don't know why people don't want to talk about it, or they're embarrassed, or they're afraid of, they're vulnerable and weak and, you know, well.


I mentioned Justin earlier when he said that we are kind of programming our young men not to do that. Well, I guess we are because we tell them, you know, butch up, walk it off. Be tough. Oh, it's not that bad. You know, it's not an injury, it's just pain, you know, don't worry about it. Get out there and, you know, be strong. 


Joyce Lofstrom

Well, you know, so I think that you make so many good points, Karen, and the whole thing about talking about your health.


All of us, but especially young men, and if we don't know, like as parents, we didn't really know what to do, I guess is maybe a one way to say it, but you know, you took your son to the doctor. I mean, on a regular basis. Max went on a regular basis, and pediatricians never said anything to Max about having an undescended testicle or what happened, or is it, and when you reflect back on it, it's like, why, as you're saying. Now how, I mean, how simple it is just to tell them and teach them how to do a self-exam.


Karen McWhirt

It's like doing a breast self-exam or, you know, things with your own health. It's just so, so frustrating, and it's so unneeded, so, at the very least, hand the guy a pamphlet. 


Joyce Lofstrom

Yes, you're right. 


Karen McWhirt

Tell, tell his mother or father to talk it over with him. You know, at the very least, you don't have to say a great spiel, just have to say a few words and plant a seed. And every time you 

see that patient. 


Joyce Lofstrom

Well, I noticed in your book cuz I folded down the page, which I know, I have a friend who's a librarian, and you're never supposed to fold down a page, but I didn't have a bookmark by me. Well, he said, "why? Why didn't I know to do this? Why didn't you know, why the hell hadn't any of my doctors told me about checking myself with testicular cancer through the years?


Why didn't I know something was wrong? I could have avoided all what I was dealing with now."  To me, that's the crux of some of these issues is that young boys, adults, they all need to know to do this. And so, anyway. That's just a point I want to make. And you made it very strongly, too, just about that situation.


So, and I've talked to other young men who, it's the same thing. They didn't know about it. They didn't know what to do. They've never heard of a testicular self-exam, and everyone knows a young man; actually, everyone knows many young men, but at least one young man who can benefit from knowing this information.


Karen McWhirt

Everyone knows a young [person]--uncles, aunts, nephews, brothers, cousins, spouses, you know, everybody--can talk about testicular cancer to the young men in their life or even the older men. I mean, young daughters can talk to their fathers, who are in their thirties or forties, about testicular cancer. If they learn about it, they can bring that message home to dad and brother or uncle and cousin.


Joyce Lofstrom

Yes, they can. They definitely can. 


Karen McWhirt

Yeah, everybody can talk, but I kind of think, I don't know it, I think, I wonder if maybe the doctors in that part, I mean, remember Nate? Nate Gautier? 


Joyce Lofstrom

Gautier, yes. In southern Missouri. Yeah. 


Karen McWhirt

He, yeah. He said that his doctor told him it was the first case of testicular cancer that he'd ever  seen.


And you know what? Ian's doctor said the same thing. And he also said, just going by the fact that it's, I "air quotes" rare cancer. It may be the only case that he sees his entire professional life as a physician. I hope he is right, but I bet he's not. But, you know, I don't know. Maybe, I don't know.


We expect our medical professionals to know all things. But you know, the fact is that they're just people, and they go into specialized training in the field in which they expect to be working. So, they're not all necessarily going to study cancer. But I don't know. I'm not giving doctors a break.


Any doctors listening? I'm not giving you a break. Learn about testicular cancer and talk about it. But maybe that's why none of the doctors told Ian about testicular cancer: there's a lack of awareness because that's internal medicine. He studied maybe cancer for a semester or maybe even just one course but doesn't really know all about cancer because he's just internal medicine and he's going to, I don't mean to, I don't mean to minimize just internal medicine, but I mean, he's internal medicine, and he deals with everyday illness. I don’t know – I’m theorizing.


Joyce Lofstrom

Right. I know. That's all we're doing. We're talking about it. So, we're not trying to, I guess, disparage people, but we are pointing out challenges of issues that are there. And I talked to a friend who's a pediatrician, and I told her Max's story. She said that according to the American Academy of Pediatrics, pediatricians are supposed to find when they do an exam, both testicles, and I'm talking about Max here because he had an undescended testicle.


But they're looking at the testicles, and if they can't find it, which would've been the case in Max's situation, then they have to figure out why they can't find it or where it is exactly. And so forth. And similar to what happened with you and Ian, I mean, nobody, in all the years, no pediatrician ever, ever questioned, well, where is it? What happened?


And you know, you look back, and as parents, I think, well, you know, we knew he had that undescended testicle. We also had surgery when he was, like, you know, about a year old, and they told us he never had one. And so, which was wrong, and he did have it, but it was, you know, up wherever it was.


And so, I think, going back to what you're saying about building awareness, and you've done so much in the years that you were speaking and then your book and everything, is that, I think, that's kind of where we still are with this cancer is to build awareness with the doctors, as well as the potential patients, the young men.


Karen McWhirt

Right. 


Joyce Lofstrom

It's frustrating. 


Karen McWhirt

I think it seems to be taking longer, I may be wrong, but it seems to be taking longer to create awareness about testicular cancer and even men's breast cancer than it did to create awareness about women's breast cancer and ovarian cancer. Because I, when I was younger, I didn't know about women's breast cancer, but then Susan B Komen Foundation came up, and boom, everybody's talking about it.


It almost seemed like it happened overnight, which I know it didn't. But you know, within a few years, everybody knew. Remind your girlfriends to check, you know, remind your sisters. Everybody knew about it, but still, no one's talking about men's breast cancer, which is also pretty common. 


Joyce Lofstrom

Yes, it is. 


Karen McWhirt

And we talk about ovarian cancer, but we don't talk about testicular cancer.


Why can't we get people to talk about this, and maybe that goes back to, I don't know, we're just embarrassed. 


Joyce Lofstrom

Yes.


Karen McWhirt

Why do guys talk about their balls all the time? Guys joke about it. They tease about it. They insult each other about it. They, I mean, think about all the ball jokes, you know? Oh, grow a hair, grow some hair on your balls for, you know, boy; you’ve got some pretty big balls to be doing that.


I wonder why they can…I don't know. They will talk about them, but they won't bring cancer into that conversation. And that goes, I guess, back to the vulnerability. And it's too embarrassing. I don't; there’s a, I don't know, there's a cutoff point there.


We can joke about it, but we don't want to say to another friend that you might have cancer in there, so you better. See, I think with why, I don't know, with breast cancer, with the Susan B. Komen Foundation, I mean, they had a lot of money, and I think that… 


Joyce Lofstrom

Right 


Karen McWhirt

…has made a big difference in that they were able to, I mean, they grew, you're right.


Joyce Lofstrom 

It didn't happen overnight. And I mean, but I think they had money to do national ad campaigns and things that testicular cancer hasn't done or been able to do. And there are, as we both know, there are wonderful organizations out there for men with testicular cancer and to raise awareness and talk about it.


But we haven't had that big national push, so to speak, where it’s, you know, and not that that would solve everything, but I think that that might be one difference, at least from my perspective, as I see it.


Karen McWhirt

But do you think maybe even guys, back to Justin again, do guys, maybe are hardwired, so to speak, to be tough? You know, they're the providers, and they have to press on, even if they have back pain, now you have to go out and, you know, I don't know, plow the fields and feed the livestock. I think of a caveman and his cave wife and a wife saying, that's okay, honey, you sit here with ice on your back; I’ll go kill the beast for dinner.


That never happened. So, you know, guys are the strong ones. They're going to just; they’re not going to be sick. Maybe it's a mindset that's kind of almost hardwired in there. 


Joyce Lofstrom

Oh, I think that's probably true. I really do. And it's, it is the way that they think about, you know, not that being ill is a weakness, but you can't appear to be ill or have anything wrong with you or, you know, talk about it or whatever.


I know one of the young men I talked to was like Ian. He had a lump that went on for a year, and it got to the point where he couldn't walk, and it had spread as well. And I mean, I guess I've had enough illness in my life, in cancer, that I can't wait. If there's something that I think is wrong with me, I got to find out or it's going to drive me crazy.


But yeah, we're all different too, so it's not, it's just, it's society. I think you make the right point, Karen. And it's like the way men are hardwired or taught to be, in terms of talking about their health or their manliness or manhood or whatever.


Karen McWhirt

Mm-hmm. And this is the whole point of Ian's story, the whole point of Together, We Will Win. You know, just telling the story is to get people talking about it, to change that in society, and you know, make sure that doctors all know and make sure parents all know and coaches and, and youth leaders. I know Ian, would have if he had known about testicular cancer being the most common cancer in young men, would have said something to someone or at the very least, of taking himself to the doctor because he, you know, he'd already did that. He did that three times. But yeah, I know that, and I think talking about it has made a difference.  More people are talking about it just very slow. 


Joyce Lofstrom

Yes. 


Karen McWhirt

But, you know, I've received a lot of emails, like I told you the other day, of people who have.


Well, I did a lot of publicity just after writing the book. So, I was on the news frequently. I was on the radio a lot. I was in the newspapers and all over social media. 


So, I don't know, I had a lot of highlighting on the book back in 2012 or 2010 to 2012, and so back then, I was receiving emails from people I hadn't seen: we didn’t know that my son had cancer. Our son came to us the next day or the next week, or the following month, and if it hadn't been for Ian's story, we might still not know. You know, we had, I don't know how many people contact us about that. So, I know that the message is getting out there, and it is helping.


And yes, I mean, even, even nurses, I even had nurses contact me and say that which I did not expect this in the book. It was all about the cancer and the treatment, but nurses would tell me that they didn't know. You know, things that you don't even really think about it, but what happens to the patient after the doctors and nurses leave the room behind the closed door?


What happens after they go home? How are they really feeling? Because you know, they ask the standard questions every time you see them. They don't really know what you were going through when you were at home for that 10 days in between chemotherapy treatments. They don't really know how you felt after they delivered that awful news that the brain tumors are growing, and then they leave the room, and you know, they have to be focused on the next patient.


So, they can't keep dwelling on how you might have felt with that information. So, some of them told me that that was great information because they'd never really thought.  because they can't.


Joyce Lofstrom

Right, right. 


Karen McWhirt

Because they have so many patients to care for. But so, I mean, that was good too. And, well, I mean, like you said, unfortunately for Max knowing in advance, I don't know, would it have 

made a difference? I guess, it might have because then you would know to have a surgery. 


Joyce Lofstrom

Right. You see, we also had a genetic predisposition because Max's dad was born with one testicle. He found his when he was 21, and it was atrophied. it was still there, and it was not cancer. It was removed, and it was all okay.


So, I do think that's also a factor with this. I guess I'll go back to what you said about doctors and how we, they're human, but we don't expect them to be human. We expect them to know everything all the time. About everything, and you know, that's it. Just, you know. Hindsight's always more powerful, but you know, you think about things that you might have done differently.


Karen McWhirt

Yeah. So, our hindsight might help others.


Joyce Lofstrom

Correct. You know, other people who are listening and don't know, that persistent cough might mean something if there's a lump in a testicle at the same time, you know, or persistent back pain.


But there's also a lump in the testicle. Okay. You better get to a doctor, you know, or there's persistent pain in the, you know, lower regions that no doctor can explain. I don't know. Go to an oncologist, you know, maybe people listening will, will learn from… 


Joyce Lofstrom

Yes, I think so. 


Karen McWhirt

Ask people like us talking about it, but I don't know.


I don't know if everybody, I don't know if people understand that cancer, because, you know, we hear that we all have cancer in our bodies. We all have it, but I kind of think that's misleading because I don't know. I feel like people think of it as something else other than what belongs in your body, but it's not.


It's just an abnormal cell. You have normal cells, and you have abnormal cells, and that's all cancer is, is an abnormal cell with a DNA strand in it that's already damaged. So, it's really a part of your body, and that's why sometimes it shows up as cancer, and sometimes it doesn't. And that's how chemo, chemotherapy drugs work, and radiation works - is they break the strands of that DNA, DNA strand in the cells, which, you know, can cause all the cells to die, but your healthy cells usually can rebuild pretty quickly.


But I don't know. I always thought that was kind of interesting because I always thought, well, you know, what's cancer? How do we, can we just cut it out? Can we just scrape it out? Can we just, like, go in and dig out and just pull everything out? 


But it's not that easy because the abnormal cells are linked to the normal cells, and there, you know, they're hogging all the energy, they're hogging all the nutrients out of the blood, and they're killing off the normal cells.


That study says that it could be a hormone imbalance in the mother's body. But other than,  where does that come from?


Joyce Lofstrom

Right, right.


Karen McWhirt

Why did that happen? Was it contraceptives that she was taking before the pregnancy, or was it in the food that she was eating or her water supply? You know, we all know that contraceptives can cause birth defects, but most people who are taking contraceptives aren't planning on having a baby right away. So, I don't know, maybe mothers don't think about that, and I'm not blaming mothers. 


Joyce Lofstrom

Yes. I know. 


Karen McWhirt

When I first, yeah, when I first heard this news, I was like, oh, great. Sigmund Freud was right. It's always the mother's fault. But it's not; it's not; how do we know what our hormone levels are?


We don't, you know, how do you measure that? Do you get on the scale in the bathroom and say, oh, my hormones are heavy today, you know? 


Joyce Lofstrom

Yes. 


Karen McWhirt

Yeah. Blame it on the hormones. But you know, there's, there's an increase in younger boys, younger than 12, being diagnosed with testicular cancer now, and there's, I even heard of a baby that had been born with testicular cancer.


I don't think he was here in the States, but, you know, that kind of points to this maybe being a thing, that it starts in the germ cell in the mother's body before the baby's even born. 


Joyce Lofstrom 

Well, I think we're probably getting, you know, close to ending, but I want you to talk about your book again, just so the title and where to get it because it's really a very, very good book.


So, you want to tell us again, Karen, about your book? 


Karen McWhirt

Oh, well, thank you. The name of the book is, the title is Together, We Will Win. What happens when we don't talk about testicular cancer? That was Ian's cancer motto. Together, we will win because, you know, you need your team of doctors and your family and your friends and your clergy, or you know, whoever supports you.


You need everybody to help you fight cancer. So that's where that title came.  The book is available on Amazon and Barnes and Noble. But it is available from all other major booksellers online. And royalties are only a dollar a book that I receive, but it's all used for cancer charity, mostly testicular cancer charity.


So, let's see; there’s the paperback and the Kindle version, which is, I think, $3.60. So, yeah, we have a website, iansstory.org. That's i a n s s t o r y.org. And also, testicular cancer. I'm sorry, I keep saying that. togetherwewillwin.net, it bridges to the same. So, with the title of the book,  and in closing, keep your eye on the ball, and together we will win. 


Joyce Lofstrom

That's right. We will win. This was really a good talk; I really enjoyed it. Karen, I hope we can do this again and, you know, continue the conversation.


Karen McWhirt

So, we'll talk about the mother's aspect.


Joyce Lofstrom

That's a great idea. Let's do that. Okay.


Karen McWhirt

Well, well, I thank you, Joyce, very much. It's been fun talking with you.


Joyce Lofstrom 

And the same here. Thanks, Karen. 


Karen McWhirt

Thank you. 


Joyce Lofstrom

Thanks so much for joining me today on Don't Give Up on Testicular Cancer from the Max Mallory Foundation. We have a website, and it's at maxmalloryfoundation.com, where you can learn more about testicular cancer, donate, and send your ideas for guests on the podcast.


And for spelling, Mallory is m a l l o r y. Please join me next time for Don't Give Up on Testicular Cancer.


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