10 Years After - Life as a Testicular Cancer Survivor

Host Joyce Lofstrom talks with Alex Tothill-Brown, a 10-year testicular cancer survivor. He shares his story of finding a lump on his testicle during his college years and then navigating the Canadian healthcare system for outstanding care. 

His journey covers the different treatments for metastasis to his lungs and brain, as doctors gave him a 30% chance of survival.

Listen to this episode of Don't Give Up on Testicular Cancer, a podcast from the Max Mallory Foundation. 

Transcript

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10 Years After – Life as a Testicular Cancer Survivor

Intro

[00:00:00] 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 [00:00:28] In 2016, at the young age of 22 from testicular cancer. Had he survived, 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 survivor.

Joyce Lofstrom [00:00:57] Hi, this is Joyce, and with me today is Alexander Tothill-Brown. He's a 10-year-plus testicular cancer survivor. He discovered a lump on his testicle when he was in college, and on our podcast today, he's going to share his story, how he found the cancer, treatment, surgery, and survival, all through the Canadian healthcare system, which we'll talk about as well.

[00:01:20] He was lucky to be with a leading testicular cancer physician, which is always important. And Alex will share some of that, which I think our listeners really like hearing about. I will end my intro by saying Alex's physicians gave him a 30 percent chance of survival. So, Alex, I'm so glad you could join me today.

Alex Tothill-Brown [00:01:41] Good to be here, Joyce. 

Joyce: So, let's just start with the question I always begin with, with the people I talk to is just tell me your story about your cancer journey, anything you want to share.

Alex: All right, so it started about approximately 10 years ago now. So, I noticed my symptoms for a time [00:02:00] before I was actually diagnosed.

[00:02:02] So, I was diagnosed at the very beginning of the year. So, in January 2014. And I first noticed my symptoms about six or seven months prior. So, about the summer beforehand, I think I found them much like any other man probably found their symptoms. They just discovered it one day. 

In my case, I was riding a bicycle that I had just purchased, and I sat, and I sat on the tumor on the way down a hill while I was out. I felt the tumor, waited until I got home, and took a look at it.

Joyce: [00:02:39] So what happened then when you found it? 

Alex: That was the first, the first symptom. After that, symptoms started piling up. I didn't think that they were connected necessarily. I sort of dismissed the tumor at the time. I suppose we can get into that later. The following symptoms were just [00:03:00] general fatigue going into the winter of that year, winter 2013.

[00:03:04] I experienced fatigue when I was at sports club meetings. I started losing my, losing my stamina significantly. I was getting much worse. quicker than anyone else in my club things like that until eventually the symptoms culminated in the beginning of 2014 with some bloody mucus. I started coughing that up over the Christmas break.

[00:03:28] Then, in the second week of January, I almost collapsed in class and was taken to the emergency room.

Joyce: I read how your professor or teacher helped you when you collapsed, but I just want to make a quick comment. So what? You had symptoms for about a year before you saw a doctor, is that right?

Alex: [00:03:46] Around, I'd say about half a year. It was the summer before the actual diagnosis, so I was diagnosed at the beginning of the year so I'd say early to mid-summer was when I first noticed the tumor. 

Joyce: Okay. Okay, that's right, because you're on your bike. You [00:04:00] get to the hospital, and then what do you find out?

Alex: [00:04:03] So, I was on campus, obviously, when I was in class, and my professor noticed that I wasn't, I didn't appear very well, so he walked me over to the hospital that we have on campus. As you probably know, the Canadian health care system is very friendly, usually very friendly to anyone who wants to come in, but you do have to wait sometime to be seen.

Alex: [00:04:27] So I was in class very early in the morning, I think it was 7 a.m. It probably wasn't until about 1 or 2 p.m. that day I received the results of my blood test and got to see a physician. So, I had been sitting in the waiting room just waiting for my blood test to come back until, eventually, a doctor pulled me aside and asked me a couple of questions, very, very general questions, about how I was feeling.

[00:04:56] And then he stopped and asked, sort of lowered [00:05:00] his voice and asked a very targeted question. He asked, have you noticed anything in your groin area that shouldn't be there, that is, noticeably should not be there. At that point, I denied to myself that this could be cancerous.

[00:05:15] In the back of my mind, I knew I certainly knew it was a possibility, but at that point, a physician was telling me, Listen, there's probably something there you need to tell, you need to tell me about it. And eventually I just kind of looked down at the floor and, and just told him yes. And he pulled me aside.

[00:05:33] I discreetly showed him the tumor. 

Joyce: Okay. All right. So, you're at the student, what I call the student health clinic or the hospital on campus. It's a full, it's a full hospital. 

Alex: It is. 

Joyce: Okay. I'm, I'm going back to my days at Mizzou when they were not, but so what happened then? 

Alex: After that, I obviously contacted my parents, but as for what we did at the hospital itself, we ran a few more tests.

[00:05:57] We did an ultrasound scan before they called a taxi to take me to the general hospital in my city. They basically transferred me over there overnight to do more tests. So, I arrived. It was getting late. It was dark by this point, so probably about 6 p.m. And I was admitted to the emergency room. I waited around a bit longer until they had a bed for me.

[00:06:21] Once we had a bed, we inserted an IV. We just went through a litany of tests, from general X-rays to, I think, a CT scan, my first CT scan. This would have taken about the next eight or nine hours. So it was very early morning the next day that I was allowed to rest, and they shipped me off to my private room upstairs.

Joyce: [00:06:46] Okay. It sounds like what happened with my son Max was all through the emergency room. So, you're up in your room now. Are your mom and dad there yet? Are one of your parents there? 

Alex: At this point, it is probably about 13 to 14 hours after the diagnosis. My parents live in Eastern Canada, and I live on the West Coast.

[00:07:08] So I contacted them as soon as I could. I think it was during the ultrasound that I was doing at the campus hospital, and they responded very, very quickly. My mom apparently, according to my mother, they almost ignored my initial text message because they thought that I might have been at a party or something and that someone had stolen my phone.

Joyce: [00:07:25] Oh boy. 

Alex: And I was texting them as a joke because I just told them, the first text I told them was, I have cancer, and it's my fault, and so I was very, a very dire sounding text message. So, they thought it was a joke that someone else had sent on my behalf or something. So no, eventually, they did respond very quickly, very quickly.

[00:07:49] No, they responded immediately, actually. Their initial impression was that it might have been a joke, but as soon as they established that, no, this was not a joke, my mother and they discussed what to do. Obviously, my father was still working. He couldn't just drop everything and come to see me.

[00:08:04] So, we also had an international student staying with us at the time  that still needed to be taken care of. We had pets. We have a house out east, so it was my mother who started looking for flights immediately, and she was there with me. I'd say just over a day, a day after my diagnosis. So, it was probably about a day and a half or so before she arrived to meet me.

[00:08:28] So right now, I'm in my room at the general hospital upstairs. So, it's about early morning, the day after my diagnosis. I've gotten a bit of sleep. They're still analyzing my tests and my X-rays. And I get a visit from two residential surgeons in the hospital. They present me with some paperwork and explained that they want to operate on the tumor as soon as possible.

[00:08:55] At this point, I'm still, I'm still blaming myself for not going to the hospital, to the hospital sooner and getting it checked out. Because again, I considered that this was cancer from the very beginning. So, at this point, I've resigned myself to just to go with whatever I'm told is the best course of action.

[00:09:17] At this point, I have not met Kollmannsberger. My parents are not here. I'm probably not thinking straight. So I signed these papers for the surgery, and they go away. It's probably about noon now, a few hours later or so. My parents are not there yet. No one, no one's really there with me. And I get a visit from Christian Kollmannsberger in my room, and he explains the entire situation.

Joyce: [00:09:41] Well, tell us who he is. He's the testicular cancer specialist? 

Alex: Oh yeah, sorry. 

Joyce: No, that's okay. 

Alex: Yes, Kollmannsberger is the specialist you were talking about. He just coincidentally happened to be the top oncologist in testicular cancer at the BC [00:10:00] Cancer Agency, which is actually separate from the, so I live in, when I said I live on the West Coast, I live in Vancouver.

[00:10:07] So that's the Vancouver General Hospital is separate from the Cancer Agency. It's about a block away. So, he was informed of my situation, and Kollmannsberger did not agree with the actions that they wanted to take to get rid of the tumor immediately.

[00:10:26] He rushed over to my room in order to inform, to let me know exactly what he planned to do. He basically took over my case from there, and he explained that he wanted to do chemotherapy for as long as it took to get the tumor down to a manageable size and then remove it. Because at this point, the tumor was probably, I would say; it's at least over 5 centimeters in diameter.

It was very big. So he pulled, he pulled rank, of course, being the lead. [00:11:00] oncologist in this particular cancer, and he removed me from the general hospital and carted me over to the Cancer Agency to start chemotherapy that day. 

Joyce: So that's a blessing that you had that happen. 

Alex: It was very fortunate, yes.

Alex: [00:11:13] Yeah. 

Joyce: So, you're now in the Cancer Agency. Tell us about the chemo because I think you were on a different regimen than I've heard of. 

Alex: Yes, I actually have it here in my notes. The chemotherapy that I received was a seven- no, an eight-step process. So, my treatment was as an inpatient. I arrived at the cancer agency very early in the morning on a Monday.

[00:11:41] We concluded about Friday afternoon. So, from the moment I had my IV in, I started with a two-hour prehydration of potassium chloride and magnesium sulfate. Then, we started with etoposide for one hour, cisplatin for 30 minutes, mesna for about 15 minutes, and ifosfamide for one hour.

[00:12:07] Then hydration between the third and eleventh hours of treatment. Then mesna for 15 minutes. And then hydration, so a saline solution, overnight until the next treatment day. 

Joyce: Wow. And how many days did you do that? 

Alex: Yeah, the IV went in on Monday morning and came out on Friday afternoon, so approximately five and a half days.

Joyce: [00:12:33] So you had the chemo every day then, that mix that you just described? 

Alex: Yes.

Joyce: Well, I guess one thing I read about your story is that, and I may be jumping ahead, but I will say it, that you had metastasis to the brain and that the chemo actually helped that? Is that accurate? 

Alex: Yeah, the metastasis was sort of an anti-climax.

[00:12:56] We knew about the metastasis from the initial [00:13:00] diagnosis, the overnight tests done at the general hospital. We knew about the metastasis on the brain as well as some metastasis to the lungs. And obviously, you cannot biopsy what's on the brain very easily. So, we were just observing that over the course of chemotherapy and my follow-up CT scans.

[00:13:22] I had one every, I believe it was six months for the first three or four years, three years after concluding treatment. And then maybe every year for the next five or so. Right now, I'm actually off of the CT scans after 10 years. But yeah, after chemotherapy concluded, and I think it was after about a year or two, they discovered that the metastasis on the brain had receded.

Joyce: [00:13:47] Okay. Wow. No, no real explanation why. 

Alex: I don't think we ever asked. But yeah, that was it for the brain metastasis, thankfully. We never had to go in and take a sample to figure out what it was. 

Joyce: Well, that's wonderful. Now, so you finished the chemo. What happened after the chemo?

Alex: [00:14:03] We did, I believe, five sessions of this. It was approximately five weeks. It was one week of chemotherapy and then a two-week rest. So, we lived in the area around the Cancer Agency. We'd spend time sightseeing. My mother loves the West Coast, so she had a great time on our time off.

[00:14:23] So it would have been about the end of April of 2014. We concluded chemotherapy, and then again, because of the Canadian healthcare system, we had to wait for a surgical room to open up so we could do the orchiectomy and remove the tumor. And that took, I believe, I think it was about two months. We returned to the university hospital to do my orchiectomy, and that went smoothly.

[00:14:46] It came out, and we're always doing follow-up tests, blood tests, just to see how, how things are going. And then it was another two or three months in September to do the follow up surgeries. So, the metastasis that I mentioned spread was primarily to the lungs and to the brain. The lungs did not recede quite as much as the brain, I think.

[00:15:13] So, Kollmannsberger wanted to do surgery in order to biopsy the metastasis on the lungs and just to get as much out as possible. So that was done in September on one side, and then in December, was a second was a second surgery on the other side.

Joyce: So, they were able to get out the, the tumors, I guess, and your lungs were okay, or how did that go?

Alex: [00:15:39] Yes. So, according to Kollmannsberger, his friend, who he recommended to do the surgery was extremely happy with the results. The surgery was about, I believe it was about eight to nine hours, and he took, I think, 13 segments out of one lung and then about another 13 or 14 out. According to the surgeon, he was very happy with his work, so he got as much as it out as he could. They biopsied the material that they took out, and it turned out to just be scar tissue, thankfully, so nothing cancerous. 

Joyce [00:16:15] Oh, wow. That's wonderful. That's always good news when you're going through all this. So, you've had lung surgeries, orchiectomy, and chemo. Are you done now? Is this pretty much taking care of the cancer? 

Alex: Yeah. So the years immediately after you've concluded treatment, they will do regular blood tests about every [00:16:36] six months or so, and I had CT scans at least once a year. Right now, after about 10 years, I think, I don't believe I've had a CT scan in the last two years or so. So eventually, they would, they want to; the further out from treatment you are, of course, the less likely it is to reoccur. So, at this point, Kollmannsberger is [00:17:00] considering my overall health, like the health impacts of the CT scans.

[00:17:04] So, he decided that after 10 years, a CT scan really is not going to help, and unless we're not going to do another CT scan until we see possibly other symptoms show up again, they might do a CT scan to confirm that it's not cancerous. But right now, it's simply a blood test every year to check for cancer markers, and then and then I meet up with Kollmannsberger or one of his associates in order to just let him know that everything's going fine; we check blood pressure, we check just do a physical checkup.

Joyce: [00:17:37] That's good, and I know the blood tests, for testicular cancer, that's a very good sign, I guess, in terms of if something's going wrong based on the numbers. I remember that, too. What do you think overall of this treatment and the whole process? And even now, what's your biggest challenge throughout all of it?

Alex: 00:17:54] It was much more of a challenge during treatment. Right now, I feel I've been back to normal, I think, for the last, I'd say, seven or eight years. Lung surgery, in particular, anyone who has had lung surgery knows that it probably has one of the largest impacts on your life because you use your lungs every day.

[00:18:12] It impacts everything that you do. So, I was given the option to skip my second lung surgery because the biopsy on the first lung showed no cancer in what they removed. But I just chose to be safe, and we did the second surgery, but you remove lung tissue, you reduce the overall size of the lungs, and your stamina goes down.

[00:18:36] So I can't exert myself for as long as I could if I had never had the surgeries. So that's. I think has been the largest impact on my life, but depending on how and where your cancer metastasizes, it may or may not have a huge impact on your everyday well-being. 

You know, I would have done the same thing. [00:18:58] I would have done the second surgery just because I would spend the rest of my life thinking about it. I know I would have. I think I understand why you would do that. It's easy for me to say because I haven't had lung surgery, but I guess in the scheme of things, you're here, and you got through all this.

[00:19:13] And so I'm sure it's frustrating not to have that stamina like you used to have. I hear your story and you know, it's so much to go through. I was particularly interested in brain cancer because Max, that's what he died from, and I find it interesting, and it could have been something totally different that you had than he had.

[00:19:32] You can't compare, I know, but it's, I'm glad that it all worked for you that way. Tell me, you know, more about the Canadian healthcare system. You kind of have already, but how it works, and there's waiting in America too, even if you, whatever health insurance.

Alex: Yes, my situation, I consider myself extremely lucky.

[00:19:51] Just the circumstance of my diagnosis, aside from having support from my parents, just being lucky enough [00:20:00] to live right next to an expert in this cancer, as well as I was given a fairly low chance of a reasonably low chance of survival, and I can, I could not tell you what made the difference in, in my case surviving, but Kollmannsberger did steer us in the right direction when it came to treatment. But I think I could have been just as unlucky as anyone else and had a much worse time in my diagnosis. But, everything just seemed to work out.

[00:20:27] The metastasis on the brain was not serious. The cancer itself responded extremely well to the treatment. I'm sorry I don't really have an answer as to why my diagnosis was any different than someone else's. I was just,I think I was just very, very lucky. 

Joyce: Well, I wouldn't expect you to have an answer.

[00:20:48] And like I said, it's not right to compare two patients because they're all different in how our bodies respond. So, I think it's interesting for our listeners to hear, too, just kind of, you know, what you went through and [00:21:00] your regimen of treatment. Like I said, I'm just glad to be able to connect with you and that you got through all of this.

[00:21:06] So it sounds like you had a big advocate in your mom too. I think that's a big. part of any, any kind of cancer and treatment for any patient is to have someone there who's listening and can jump in to ask questions or, you know, whatever might need to happen. Did you find that? I guess you've already said that you did, but any comment on that, her advocacy for you and your parents?

Alex: [00:21:29] Yes. My mother, while I was in under chemotherapy, it's very difficult to think properly during chemotherapy. You have the physical ailments that are associated with it, the nausea, but also it does affect your thinking as well. So, when I would meet up with my doctors, Kollmannsberger, or anyone else, asking questions was basically the last thing on my mind.

[00:21:54] So having someone there who is invested in your health is important. She was there to ask questions on my behalf, just to keep track of things such as my platelet count or any of the smaller details that I would have otherwise overlooked. She recorded all of that. I have notes and letters that she'd written to family and friends describing the situation.

[00:22:20] She has things in here that I've long forgotten. So, I'd say that aside from having family to support you, having someone there who's willing to listen on your behalf, because you may not be all there every time you speak with someone, is extremely important. 

Joyce: Yeah, yeah, I would agree.

[00:22:46] Please just talk about what you are doing. Tell us about your career right now. 

Alex: Yes, I was diagnosed in my last year of university, and I was studying to be a geologist. [00:23:00] I work in geochemistry in a laboratory, and I do mining survey work.

[00:23:09] So clients who are mining up north, like north in the Rockies, actually, we get samples from all over the world in various universities or mining sites around the world, and we will tell clients the quality of the samples that they send to us, basically. 

Joyce: [00:23:32] So that would mean, for example, if I have a mine that I'm looking for X, whatever that is.

That element or mineral might be. You could tell them how pure it is or whether it's something worth looking for.

Alex: Yeah, basically, so when mining takes a lot of money, and you don't want to spend a lot of money mining in an area that will not return your investment so before they sink a lot of money into a mining operation, they will send they'll basically map out or grid out an area that they think might be valuable [00:24:00] to mine and they will do a basically small scale mining.

[00:24:04] They will take a sizable amount of rock or whatever they're digging into and send it to us. We will tell them we'll analyze it and tell them the quality of the mineral that they're interested in. Then, they can take that information, map out the area, and figure out where they should invest their time, effort, and money into mining [00:24:32] a larger-scale operation. 

Joyce: [00:24:32] Well, that's fascinating. I didn't even know that that kind of job existed. I mean, except, you know, I only took one geology course in college, which I really liked. It was just kind of fascinating to learn different things about rocks, but it's more than rocks [00:24:49] It's kind of the whole structure of the earth, I would say, but that's, that's pretty cool. It's a very interesting job. I would think.

Joyce: What's next on your career or life, anything you want to [00:25:00] share, like what's ahead for you? 

Alex: Yeah, so actually my supervisor convinced me to continue my education. So, I've been working at this laboratory for about three years.

[00:25:10] I've changed positions. I've moved from entry-level positions to more technical positions. The one that I'm working in right now is in sample analysis, which is operating probes, checking for mineral concentrations, and that sort of thing. But he convinced me to register for general assayer training.

[00:25:33] So asaying is basically identification. Our lab as a whole is basically, its function is to assay samples. We take in samples, and we output data. We identify what is in the sample and how much of it. This assayer course would basically be all skills related to identification in [00:26:00] this field, in rocks, in soil samples, and that sort of thing.

[00:26:03] I'll be starting that in a couple of months. 

Joyce: Okay. So, it's just more in-depth analysis, it sounds like, with what you're doing or will do with this class or course. 

Alex: Yeah, it'll basically cover all aspects of our laboratory work, from receiving these samples to initially processing them. You can't just take a chunk of rock and then analyze exactly what's in it.

[00:26:29] You have to mechanically reduce its size from a rock to a pebble to a very fine grain and then undergo any number of intermediate processes before you can actually get it under, like, actually put a probe in it and analyze a specific mineral within it. So, every aspect of the assayer process is going to be in this course.

[00:26:53] Yeah. I'm quite excited about where this is going. So, this course will more or less allow [00:27:00] me to do what my supervisor is doing, who oversees a couple of different laboratories within or sub-laboratories within the greater laboratory that I'm in. 

Joyce: Okay. All right. That sounds like something you'll look forward to, so I'm sure it'll go well.

Alex: [00:27:17] All right. Thank you. 

Joyce: And then my last question is, what song, when you hear it, do you have to sing along? 

Alex: Do you ask this of everyone? 

Joyce: Yes, I do. Yeah, I do. Yeah. Something fun. 

Alex: You know, probably something by The Who, actually. 

Joyce: By The Who? Yeah. I like The Who a lot. 

Alex: Well, I grew up watching CSI, so I'm 30. Anyone who's my age and watched television in the early 2000s was probably introduced to The Who through CSI. [00:27:45] So if any song that I hear I want to sing to, it's probably that. 

Joyce: I'm 70, and I grew up in the 60s. I actually saw The Who in concert in Kansas City back in that era, which was, I have to say; they walked off the stage because this place we were, the sound was so bad that it didn't work for them, but they have great music.

[00:28:03] So, thanks so much for taking the time, Alex. I appreciate it. And it sounds like you have a great future ahead with your studies and analysis of geology. I always say this to people, too. I hope maybe down the road, you can come back and update us on what's happening and go from there.

Alex: [00:28:21] Yeah, I'd be glad to. Thanks a lot for the interview.

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. Join us again next time for another episode of Don't Give Up on Testicular Cancer.


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