The Timing of Testicular Cancer - A Brother Shares His Brother's Journey

On November 12, 2016, Roshan Karunaratne's brother died in his arms due to stage 4 testicular cancer. Shehan was only 28 years of age. Roshan watched his older brother suffer from the simple fact that he didn't go to the doctor early enough. For Roshan, this journey also meant his life was about to change. After 18 months of hardcore chemotherapy, his brother died.

As Roshan explains on his Movember page, "I swore never to let another man die too young if I had anything to do with it."

Roshan tells more about his brother's experience with testicular cancer and his role as a caregiver in this podcast episode of Don't Give Up on Testicular Cancer from the Max Mallory Foundation. 

Transcript

Don't Give Up on Testicular Cancer

The Timing of Testicular Cancer: A Brother Shares His Brother's Story

Season 4, Episode 5

[00:00:00] Intro: Welcome to Don't Give Up on Testicular Cancer, a podcast where testicular cancer survivors, caregivers, and others who have navigated the cancer journey share their stories. The podcast comes to you from the Max Mallory Foundation, a nonprofit, family foundation focused on educating about testicular cancer in honor and in memory of Max Mallory, who died in 2016 at the young age of 22 from testicular cancer, had he survived.

[00:00:40] Intro: Max wanted to help young adults with cancer. This podcast helps meet that goal. Here now is your host, Joyce Lofstrom, Max's mom and a young adult cancer [00:01:00] survivor.

[00:01:11] Joyce Lofstrom: On November 12, 2016, Roshan Karunaratne's brother died in his arms due to stage 4 testicular cancer. Shehan was only 28 years of age. Roshan watched his older brother suffer from the simple fact that he didn't go to the doctor early enough. For Roshan, this journey also meant his life was about to change. After 18 months of hardcore chemotherapy, his brother died.

[00:01:36] Joyce: As Roshan explains on his Movember page, "I swore never to let another man die too young if I had anything to do with it." Roshan joins me today to tell us more about his brother's experience with testicular cancer and his role as a caregiver. So, Roshan, welcome. I'm glad you could join me. 

[00:01:56] Roshan: Thanks, Joyce. I appreciate the invite, and, of course, I'm excited [00:02:00] to engage your audience and get the word out there more about testicular cancer and things you can and hopefully don't do. 

[00:02:08] Joyce: So. tell us just what happened. Tell us about your brother's testicular cancer journey and your role. I read about you in an article in the Guardian. So that's where I first met you, so to speak, but please go ahead and share what you would like. 

[00:02:25] Roshan: When you think about cancer, certainly in my family, at least, going through my brother's, first note around actually having cancer was new. You hear all these stories about friends or people's families going through this. But of course, when it happens to you, it has a certain sentiment, which is more devastating. 

Roshan: I remember very clearly going to my father's place for my birthday. This was 2014. And unfortunately, when I got there, my father just said, have you spoken to your brother? And I just said no. And as soon as I called my brother, he was living in Hong Kong then, and [00:03:00] I was in Australia. And he just said I'm so sorry. I've got cancer, and I've got a 20 percent chance to live. 

Roshan: That was one of the most devastating things I've ever heard, even today. But of course, he walked me through the story, and we found out that. Unfortunately, he had suffered stage four. It escalated to stage four testicular cancer, but it was because he had felt a lump a year before and didn't go to the doctor.

[00:03:26] Roshan: And essentially, what that meant is many discussions with GPs and physios, which meant the cancer was spreading through his body. And the first point of call with testicle cancer is to remove the testicle, which is what they did. But I think, unfortunately for him when they went through the X-rays, they found X-rays showing tumors in his lungs, up his legs, and different parts of his body. And, of course, I think because it was aggressive, an aggressive form of testicular cancer, it also meant that he had a lower chance to live. 

Roshan: That was the start of the journey. There was a bit more complexity because he was overseas.

[00:04:00] Roshan: And we're managing this from another country. But we were able to very quickly get him home to Australia and start that journey with him. 

[00:04:08] Joyce: So, tell us a little bit about, you got him home to Australia from Hong Kong, but describe some of the treatment. I'm familiar with intensive chemotherapy, and I'm sure some of our listeners are, but can you talk more about that? And again, if you were there with him, what would happen? 

[00:04:27] Roshan: Yeah. For him, once you have passed that first instance of removing the testicle, if that hasn't worked, and even if it has, to be honest, they will send you to chemotherapy. I think, for him, because it was stage four, the intensity of that chemotherapy was a lot more rounds of it.

[00:04:44] Roshan: And, of course, you see things like your white blood cells deplete, and you're spending a lot of your time in the hospital at that point. I can remember very clearly being in the hospital five days a week, sometimes seven days a week. And they're residing there for the next few months, which is a [00:05:00] strange process because you're used to having them around. Still, they're prone to infection, which means that you need to be very safe around them and limit the number of people seeing them, which is a very lonely journey for them. Of course, for him, you can hope that your tumor markers subdue over time, but definitely for him because it was intensive chemo.

[00:05:18] Roshan: He did do two rounds of high-dose intensive chemo, which did happen over an 18-month period. Unfortunately, with that came the idea of multiple surgeries. When you have a position where the tumors aren't getting to the point where you want them to, or there are residual tumors still sitting there.

[00:05:36] Roshan: There is now the option of surgery. So, I know for him, in between those chemotherapy rounds were also multiple surgeries. For example, he ended up, by the time he had gone through multiple rounds was he had one lung left. So, they completely removed one of them. And other areas of his body.

[00:05:53] Roshan: It's a very brutal, time-consuming time of your life. You sometimes think about chemotherapy and your loved one in the hospital, but you also don't go through it unless you've been there seeing them at a time that you spent with that loved one in the hospital.

[00:06:09] Roshan: It's not just the physical of seeing them sort of decay is the word that I remember using very clearly, but also their mental health suffering. When you go through that journey, and you see their decay and find hope that they may survive to provide a dream or vision to keep them motivated, it's tough and tiring, but it's necessary.

[00:06:31] Roshan: And that was our experience as a family unit. 

[00:06:36] Joyce: I am just commenting on some of what you said with Max. He went through, well, he never got through it; he went through one round or started one round of intense chemotherapy, and I remember him saying at one point, "You know, I never catch a break," because certain things weren't happening the way that the doctors wanted or he didn't feel well or things like that.

[00:06:57] Joyce: And it's tough to watch that. I'm sure that you experienced that, as you just said, with your brother and your family, and I commend you for being there with him because I know how much that had to mean. I was also overwhelmed by the article about how your brother's cancer had spread.

[00:07:17] Joyce: You described it throughout his body. And that's one thing I've just been astounded with about testicular cancer is it almost everybody I've talked to, it's, it's aggressive. I mean, it spreads quickly. I mean, a lot of cancers do, I guess, but I think sometimes I've seen that with the men I've talked to. 

[00:07:42] Joyce: I wanted to share this statistic. It's a 2022 statistic from the Australian government that said the survival rate of testicular cancer is exceptionally high if it's detected early. 97 out of 100 Australian men will live over five years after diagnosis. The [00:08:00] key for listeners is detecting it early, which is so important.

[00:08:06] Joyce: So, tell me this: I transitioned to another question for you, but I know your brother said that he apologized when he said he had cancer and told your family. Can you talk about your brother's desire to protect your family and his comment? 

[00:08:24] Roshan: Yeah, that was probably one of the most horrid pieces of the story when he had multiple times apologized for what he was going through. And my brother and I had a very masculine father who always wanted us to achieve things. And we were always taught to protect those around us who are close to us.

[00:08:48] Roshan: But also to make sure that we found the best path forward. And my brother and I probably take that in too many senses of the word, and you can't really. With a work situation, for example, make that the same thing about your personal life. Some things require feelings and people to take care of you.

[00:09:08] Roshan: You feel like you're a burden. His apology was number one, the fact that he was going through this, and he could see very clearly that all of us were spending a lot of our time. Taking care of myself, for example, I was living in another city.

[00:09:23] Roshan: I relocated back to Sydney to take care of him, but I also changed jobs to less strained ones, so I had more flexibility. And the same with my father, my cousins, and his friends. The second part about his apology was that, to your point, it was about many men not figuring this out early.

[00:09:43] Roshan: Many of my messaging for the last eight or nine years has been around getting to the doctor early if you feel something. Unfortunately, he felt a lump a year before he went to the doctor. The idea that it could be something was the thing that stopped him [00:10:00] from expressing to the doctors exactly the symptoms that he felt because there was that hope or dream that it may be something that, that it wasn't.

[00:10:07] Roshan: And I think his apology was just based on the fact that he wished that he did go to the doctor earlier because not only did he put us in an unfortunate position, and I hate to say it like that, but realistically, that's what it was. But also, you know, he had a long-term partner, and I know he was in the process of looking at rings.

[00:10:26] Roshan: I was there with him. We were talking about how if he made it through, he would propose. And then, obviously, he never got that opportunity to do so. And a lot of that played a lot of the roles of why he was apologizing. So, yeah, it's a mixture of both. It's just you don't want to put people that you love in an unfortunate position.

[00:10:43] Roshan: Secondly, once you've done that, you feel, and you carry a lot of that burden with you, and it's how do you get through that without apologizing. Unfortunately, If I were in the same position, I would probably offer the same apology as he did. 

[00:11:00] Joyce: Yeah, that's interesting to think about that apologizing because you're right in terms of the time people spend, family members spend with someone who's sick and especially with cancer and this cancer. Being in the hospital a lot, you want to be there, and you are there, but it's challenging at times. When I listen to you, my heart goes out to all your family for what he had to go through.

[00:11:23] Joyce: What was your biggest challenge through all of this as a caregiver? And you changed jobs, and I mean, you just had a lot of stress. What was your biggest challenge? 

[00:11:36] Roshan: Yeah, good, good question. If I were to think about it at the time, the biggest challenge I would go through was changing jobs and sacrificing my career to care for someone who should have done something different in how he cared for himself.

[00:11:49] Roshan: But you soon start to realize, when they lose their taste and, you see that body shriveled, I know he went from about 80 kilograms to 43. You start to see how they are going through life and what they comment on. I'm sure you had this with Max, as well, that whole catch-a-break phenomenon. The people in your life that matter will always be family and those close ones in that close circle.

[00:12:13] Roshan: And I saw my brother go through that. When he went through the cancer journey, everything was like a light flip. He wanted to put everything into the people he loved and cared about. And those are the only people that mattered. So I would say that the most challenging piece for that reason, after seeing that, was knowing that I was going to go through my change in philosophy almost with my internal dialogue and then trying to understand how that fits in with my future life as well because you see the person, one of the people that you love most he was my best friend go through such a distraught journey and to see how their mind changes.

[00:12:53] Roshan: It also challenges how you think about the world. And I still go through my journey about that, but, trying to [00:13:00] figure out ways to. Keeping their legacy alive with the way that their mindset changed as they went through that cancer journey, especially going towards the end when it wasn't looking so positive, is something that I still struggle with today.

[00:13:12] Roshan: But, it gives me more clarity on the things that I think are more, more important, 

[00:13:17] Joyce: What you just said is so true is how the family members start to look, look differently at life and what matters. And then also what your brother and Max went through, just what they would do if they survived this kind of thing, looking at your circle is, is very important.

[00:13:38] Roshan: When things go wrong, unfortunately, you do get an option to look at who's around when that happens. And my brother was very, very loved by a lot of people. He was the guy who would sit in a bar and talk to anyone. When I remember him, he was also leaving his legacy because he was always an open ear to people and gave great advice.

[00:14:04] Roshan: And I think. When things did go wrong, he just had such a strong community around him. When he had to shave his head for the first time, I remember we had about eight or nine of his friends. We also did that around him to keep his morals and support up. So yeah, keeping a close, tight-knit circle is very important.

[00:14:23] Roshan: You would assume at some point someone in your friendship circles or family is going to go through something, and the other advice that I would give is that if someone has gone through that, it is to look deeper. It's the reason why things happen because, if you're in my position and maybe yours as well, Joyce, is that you see things in the news or different new media outlets, but when it happens to your own family, you know, the only person sometimes to blame is yourself for not understanding it enough.

[00:14:53] Roshan: And I think one of the things that I, I remember is with testicular cancer, unfortunately, just, there just wasn't enough education around. I think there are many stories, and these outlets, like podcasts like you're doing as well, are great because they help activate the engagement around why things happened. These stories that we have of young men dying too young do mean that the onus is on us to listen, understand, and seek to try and find ways to move forward in a healthier way. So yeah, surround yourself with good people who support you.

[00:15:27] Roshan: And continue to be curious and understand why things happen, especially if it could be relevant to you in the same age group.

[00:15:37] Joyce: Yeah, that's very good advice. Thank you. I'm just thinking about friends and support groups and how important they are for everybody at any time in life, especially when going through something like this.

[00:15:48] Joyce: Your comment is a good segue to what you're doing regarding raising awareness, Movember, and things like that. So, do you want to talk about what you're doing now to support awareness?

[00:16:04] Roshan: Of course. Yeah. So, when my brother passed away, I've always just been someone who, when you go through hardships, you've got two kinds of routes you can go through. One is to, I guess, take some time, reflect, and go inwards. The second is to look outwards and figure out a way to build a solution. And this was my way of dealing with it at the time, but I reached out to the Movember Foundation.

[00:16:31] Roshan: I'm also an ambassador for them. And the reason I reached out to them was because. I saw, especially for me being like a young male, I was, I think, 25 when my brother passed away. I'm 35 now. I remember with Movember, for example, they do a really good job of telling the story around testicular and prostate cancer, but in a unique way that speaks to the audience.

[00:16:55] Roshan: By doing that and making it fun, that resonated with me. So, I've been working with them very closely as an ambassador for the last 10 years in a lot of opportunities. I was in the annual report, which is used to lobby global funding for testicular cancer, which is great.

[00:17:12] Roshan: And I'll continue to do so, but there have been many opportunities to be in many news outlets, or like you said, in the Guardian. For me, it wasn't so much about spreading the word in those outlets. It was more about opportunities to get the word to more people as quickly as possible.

[00:17:31] Roshan: If I can touch one person by the story, and they feel the pain with empathy around what we've gone through. That is a huge advantage because that person will tell another five people. So yeah, that's always been the outlet for me. I don't plan to stop anytime soon, but hopefully, I will continue to do these each year for as long as I'm around.

[00:17:54] Roshan: This is just another great opportunity to hopefully activate a few more listeners who may not have heard a story that touched them before in the same way and to help them understand that people like you and I are doing this because we don't want these things to happen to their loved ones as it happened to ours.

[00:18:13] Joyce: Yeah, that's a good point. If one person's touched, that's enough. Obviously, you hope for more, but if you've been able to help or save one person from going through what your brother and Max went through, it's worth everything we do.

[00:18:29] Joyce: I have a question too, and I asked this one just because of what Max's brother, my older son, went through when Max died and how hard it was to lose his only sibling. You mentioned that Shehan was your best friend. And can you talk a bit about that as thinking of other people listening who might have lost someone, and that person was their only sibling? I don't know if the question is about how to deal with it, but maybe it's just what you went through. How you dealt with it. I guess that is the question, 

[00:19:05] Roshan: Of course. To give some background, my brother and I were a year and a half apart. We went to the same school. We were playing in the same sports teams. We had the same group of friends. We literally did everything together. You know, if I can send some photos after this, we've got a multitude of photos of us wearing the same outfit. I mean, it was like we were, we were hand in hand. And a lot of times, people thought we were twins.

[00:19:30] Roshan: As we got older, there were those periods where you, no more broadly love, you're not the best friends, but certainly, I think when high school completed and we went into university, and we became a bit more independent, we indeed found a way back. And we had quite a chaotic childhood.

[00:19:48] Roshan: What was interesting for me is that I looked at him very much, not just like a fatherhood almost figure, but someone I just looked up to. I could tell him everything or anything about myself without judgment, and I always respected how he lived his life.

[00:20:06] Roshan: I took much of that into my stride and used that for my own life. And, you know, I'm proud of where I am today.  But a lot of the way I am today, I owe that to my brother and how he also helped raise me. So, when you lose that, that person is officially gone from your life, and, at least in this tight lap, I'll never see them again.

[00:20:27] Rashon: It leaves a very, very black hole. And I'm quite open to this. I went to therapy to understand what was around me and why I was feeling a certain way and to get closure. I was a bit luckier than most when my brother knew he was going to pass away.

[00:20:45] Roshan: I got to be there; he had his, his very last breaths in my arms. I was holding him as he passed away. But also said to me," Look, these are the cards that have been dealt. And I want you to know that I've had an amazing life. Although this is a [chapter, it's not the whole story."

[00:21:01] Roshan: And and that always stuck with me. But certainly, if you've gone through this before, and for me, especially if I hadn't gone and sought therapy and dealt with my brother's passing, then I don't think that a lot of the things I am doing today would be happening.

[00:21:17] Roshan: I urge people to think about it. When that person's gone, think about your mental health and put steps in place that are. You don't want a big win straight away because you're never going to fill the void of that person gone. But I think you want to take little steps. And also, just like we mentioned before, that friendship circle that you have around you, the people that love and care about you, will become your rock, and it's okay to lean on them a bit more.

[00:21:41] Roshan: I certainly struggled with that piece because I like doing a lot of things by myself, too. Build a vision and enter, and I go in one direction, but over time, I certainly am more open to that today than I used to be. And so again, I think it's just really, really important to think about the circle around you and [00:22:00] make sure that those people are supportive in the things that happened in your life so that when that person's gone, you're not feeling the void, but you can complement it.

[00:22:09] Joyce: Yeah, you're right. I agree. And we went to counseling as a family. We went individually to grief counselors and other counselors to deal with it. And the thing I learned, too, is everybody's different in how they deal with grief. And it's very worthwhile to do that and help yourself that way.

[00:22:29] Joyce: And I think that conversation or the comments that you just made where Shehan support the quote that was from you in that article, too, that said there's strength in being vulnerable, and I think there is. And you just described that. So we've talked a lot about the cancer journey and your brother and, and you, but tell us about you, Roshan, who you are and what you're doing and just, you know, things about your life now.

[00:22:58] Roshan: When my brother went through that process, I worked in the medical field for a long time doing clinical support. And that always made me feel good. One of the things I know is that when my brother passed away, though he was in Hong Kong for about a year and a half, he never really got to complete that journey.

[00:23:18] Roshan: Shehan and I just were big dreamers. We were always in Australia and just thinking about these amazing opportunities that people could do. And we always wanted to be on that sort of upper threshold. And one of the things obviously that I've done that my brother and I spoke about was that we wanted to complete this journey of being overseas.

[00:23:34] Roshan: I was fortunate enough to live and work in New York City for a while, an incredible thing coming from Australia. Now, I've been living and working in London, which will likely be home for the long term in terms of my career. What I've been doing, I continue to be an ambassador for and support Movember. I'll continue to spread positive words when I get opportunities to do so because, like you said, and [00:24:00] obviously, it's amazing how I did go through the podcast and seeing how many episodes you've done and being consistent with that is, is key.

[00:24:07] Roshan: You should be proud of that choice. I'm working in a voice automation software company and now also working and advising on a company called SIRE, which, for me, education has become important. This company is helping the threshold between mental health, better grades, and more efficient studying methods.

[00:24:27] Roshan: And something in the medical field that we see is quite exhaustive and something that I know there's a problem to solve. So yeah, that's me at the moment. I'm driven and thriving. And there's not a day that goes by that I don't think about my brother.

[00:24:43] Roshan: It will always be there, but you find ways to deal with it. Rewrite the story and find ways to look at it.  Instead of triggers, I've heard that this term is called Glimmers. And I like that because when I think about my brother now, there are certain things that I look at that remind me of the positive times that we had.

[00:24:58] Roshan: That's the learning I've had that kind of helps you move forward and stay determined with the end goal. 

[00:25:03] Joyce: Yeah. That's great. Well, you are in, or have been in, two great cities. New York - I love New York. I used to travel there for business. I have a friend outside of New York. It's a great city to walk around and do things.

[00:25:17] Joyce Lofstrom: I've never been to London, but that's on my list, so amazing. I'm sure you'd pardon me. Oh, there you go. I'm sure you'd love it here. 

[00:25:25] Joyce Lofstrom: Yeah. So, what song do you have to sing along to when you hear it?

[00:25:33] Roshan: That's a good, good question. When I look at that, Tracy Chapman always comes up, whether I'm on YouTube or Spotify. Fast Car is one of the ones my brother and I would always sing to and play on the guitar.

[00:25:50] Roshan: We did…it was one of the things we did together. Very often. So, that's certainly one with sentimental value and a love of the song.

[00:26:00] Joyce: That's great. Yeah. She had, I think it was what, last year at the Emmy's, or not Emmy's, the music awards, but yeah, she's gotten very well-known over those years.

[00:26:09] Joyce: That's a great song too. I like that song—lots of meaning. 

[00:26:17] Joyce: That's all I have for this podcast, Roshan, and I appreciate that you joined me, took the time to do it, and shared your story and your brother's story. I could ask you to come back in a year or so. I always say that to people because there might be an update that you want to share.

[00:26:34] Joyce: Thanks, and I am thinking of your family and brother too. I appreciate all that you're doing to raise awareness about testicular cancer. 

[00:26:43] Roshan: Thanks, Joyce. I appreciate you having me. And yeah, like I said, you should be proud. It's incredible to see the consistency and what you're doing. It's always good to reminisce about; as hard as these stories are, many good things have come out of this for the rest of the world.

[00:26:57] Roshan: I'm sure we'll keep fighting the good fight. 

[00:27:00] Joyce: Yes, we will. Thanks. 

[00:27:03] Closing: Thank you for listening to this episode of Don't Give Up on Testicular Cancer. If you enjoyed this podcast, please subscribe to our program on your favorite podcast directory. You can also visit the Max Mallory Foundation at www.maxmalloryfoundation.com/podcast to listen to previous podcast episodes or donate to the Foundation.

[00:27:44] Closing: And join us again next time for another episode of Don't Give Up on Testicular Cancer.


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