Interviewed by: Taylor Scheib Edited by: Chris Sanchez
When he was just 24, Josh was diagnosed with stage 3A testicular cancer.
Josh’s diagnosis came as a rude shock given his youth and excellent physical condition. He maintains a healthy lifestyle, has no vices, and loves to join triathlons. That said, he had been experiencing several symptoms for some months before his diagnosis, including pain in his torso and shortness of breath, which were easy to shrug off but in retrospect were suspicious.
Armed with a positive attitude, Josh decided to fight his cancer by undergoing chemotherapy. His doctors put him on 3 cycles of bleomycin, etoposide and cisplatin (BEP).
The succeeding months of Josh’s life were traumatic and difficult. Among other things, he experienced serious side effects, including a significant reaction to a medicine there was no substitute for. He also had to face the possibility of becoming infertile. However, his good attitude combined with successful treatments helped him get through those challenging days.
Josh now shares his story with us to grow awareness of testicular cancer and to fight the stigma attached to it; the importance of finding a community that can provide support, and of giving back to said community as well; and the significance of staying positive even when times get tough.
In addition to Josh’s narrative, The Patient Story offers a diverse collection of stories about testicular cancer. These empowering stories provide real-life experiences, valuable insights, and perspectives on symptoms, diagnosis, and treatment options for cancer.
Name: Josh T.
Diagnosis:
Testicular cancer
Staging:
Stage 3A
Initial Symptoms:
Pain in his chest, lower back, and abdomen
Shortness of breath, especially during exercise
Mass found on one testicle
Treatment:
Chemotherapy: bleomycin, etoposide and cisplatin (BEP)
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Age at Diagnosis: 25 1st Symptoms: Grape-sized tumor on neck; hip and pelvis pain; ultrasound revealed tumor on right testicle Treatment: Chemotherapy (BEP), removal of right testicle, lymph node resection (RPLND), and tumor dissection in the neck
Age Diagnosed: 24 1st Symptoms: Fatigue, one swollen testicle Treatment: BEP chemotherapy, surgeries (including complications)
Steven C.Diagnosis: Non-Seminoma Testicular Cancer Symptoms: Enlarged left testicle, tenderness in left testicle, lump in back (retroperitoneum) Treatment: Orchiectomy, chemo, retroperitoneal lymph node dissection
At 21 years old, cancer was not on Ben’s mind when he noticed his testicle becoming hard and swollen. 6 months after noticing changes in his testicle, he visited the doctor who scheduled an ultrasound on Ben’s 22nd birthday. Later that same day, Ben was diagnosed with testicular cancer.
As a standup comedian, Ben advocates for testicular cancer awareness through humor and encourages people he meets to get examined when they notice changes in their bodies.
Ben shares his cancer story with us including his experience with reoccurrence, scanxiety, and multiple surgeries, and the importance of sharing cancer awareness.
It’s so worth getting stuff checked out when you think something is even a little bit wrong. Waiting is just going to increase your anxiety and ultimately make things worse. Things usually don’t just go away.
Ben F.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
I noticed that 1 of my testicles got hard out of nowhere. I wrote it off for a whole 6 months. Then it started growing and growing and growing.
I’m Ben Foede. I’m 26 years old. I’ve been playing drums for 13 years. I bounce out of nightclubs. I do a lot of music stuff in general and some stand-up comedy here and there. I generally enjoy being involved in entertainment.
I try to get out and do at least 1 set a month. I generally work with a production company called Fearless Productions and do Fearless Lab. I do a 10-minute set and just about every time I show up, I’m about to try out some new material. I chat with some of the other comics and I’m like, “I have this one bit that I do about cancer.” I’ll tell them the short version, and they’re like, “You got to do that on stage” every single time.
What were your first symptoms?
When I was living in Texas, I noticed that 1 of my testicles got hard out of nowhere. I wrote it off for a whole 6 months. Then it started growing and growing and growing. My main mode of transportation was bicycle so that became a problem. It got to be almost 6 inches across and 2 pounds. That was the only symptom I ever really had, which was weird. I was like, it can’t be that bad. Then it turned out it was.
I decided to get checked out just on a whim. I was like, I’m tired of having this be a problem. It wasn’t painful, but it was uncomfortable, so let’s go see what’s going on.
I waited 6 months like an idiot because there’s that level of denial that there’s an actual problem. Especially when it comes to your genitalia. It’s embarrassing, it’s frightening and you just don’t want it to be a problem, but it is.
Getting examined & diagnosed
I’m going to set you up with a surgeon. He’s a urologist down here.” I was like, “Okay, what’s his name?” And the doctor said, “His name is Dick Chopp.” I was like, this is the weirdest day of my life.
I went to my doctor and it was my first time with this doctor because I had just moved. That started a cascading effect of eccentric doctors. My doctor competes annually at the beard and mustache championships. In walks this guy with an Alabama accent and giant beard, and he’s like, “Okay, let’s check you out.” I was like, this is weird. He gets a look down there and he’s like, “Alright, we gotta get an ultrasound.” I thought this is continuing to be weird, but this is what’s going to be happening. I don’t have a lot of choices. I’m just getting on this roller coaster. Let’s go.
He schedules me to go to the doctor on my 22nd birthday. I lay down and get my testicle ultrasounded, which is not something that I knew you could even do. Then on the bus ride home, I get a call from my doctor saying, “It’s testicular cancer. You have a massive tumor. I’m going to set you up with a surgeon. He’s a urologist down here.” I was like, “Okay, what’s his name?” And the doctor said, “His name is Dick Chopp.” I was like, this is the weirdest day of my life.
I knew nothing. Nothing at all. I found out that it usually shows up in your early 20s, which I feel should be talked about more because that’s when people are still stupid because I was. And two, there’s a big family genetic component to it, at least for the specific kind that I had.
I found out 2 months later that there was a family history. It was just never talked about because there’s some weird sense of shame that goes with that. I get that because it’s your genitals, but you need to tell people if it’s running in your family. It’s an important thing to know because if something is even just slightly off, just go get it checked out.
How did you discover testicular cancer ran in your family?
My mom was talking to my grandmother on the phone and my grandma said, “Oh, this person had testicular cancer.” I had a little bit of anger. If I had known, I would have gone sooner. I wouldn’t have waited 6 months and 2 pounds of growth. I probably wouldn’t have it spread to my lymph nodes if I had just gotten it taken care of right away. But I didn’t think that that was even on the table.
Surgery
If I had known, I would have gone sooner. I wouldn’t have waited 6 months and 2 pounds of growth.
I had a really short conversation where he hooked me up with the urologist and I met him. He was a very nice guy, an older dude. He said, “We’re just gonna yank that right out there and you should be good to go.” It was fairly simple.
Within a week, they put me under and I assumed that it was going to be a cut into the scrotum. Turns out, they got to take out all the plumbing as well. So it’s actually above the genitals where the incision is made.
That surgery was laparoscopic with 5 little holes in my lower abdomen and they took out 16 or 17 little tumors all throughout my chest. Now I have a picture of my insides, which is insane. One of the incisions apparently severs the nerve that flicks the switch between the testicles and the bladder. But laparoscopic surgery is so much easier than you’d think. For the next 2 weeks, you’re definitely not going to want to cough or laugh.
With an orchiectomy, which is removing the testicle, there isn’t a whole lot of prep that goes into it. It is a pretty simple procedure. It’s likely that you’d get a drain put in, so you’d have to come in within the next week again to get that removed. There could be some sutures in a drain. I’m saying that from experience. The nurse was new and in training, and he didn’t realize there were sutures in the drain and just kept on pulling. He was like, “I don’t know why I can’t get it out.” Then the doctor came in and he’s like, “Dude!”
The whole time they constantly asked me, “You want to do something in case you want to have kids in the future?” I was like, “Actually I have a strong plan to not have children, so this is convenient.” It wasn’t the first surgery that even made me infertile. It was the second surgery, which wasn’t even on my genitalia.
Describe recovery and follow-up appointments post-surgery
I was back on a bike within 5 days. That surgery was not a problem.
They did the biopsy after the surgery and found, in their words, no testicular tissue visible. That’s when I found out that it was a teratoma. It was an absorbed twin with hair, bone, and flesh tissue. They said that in all likelihood I would not have to go through any chemo because doing an orchiectomy would likely flush my body of the cancerous nature.
Afterward, I was doing blood tests once a week for a month, then twice a month, then once a month, then once every 3 months, then once every 6 months, and some CTS every 6 months, just to be sure. They said, “We’re going to keep an eye on it and see if anything happens,” which ultimately did happen.
They did the biopsy after the surgery and found, in their words, no testicular tissue visible. That’s when I found out that it was a teratoma.
How treatable is testicular cancer?
The thing about testicular cancer, it really shouldn’t be so stigmatized because it is dangerous, but it is also the most treatable kind of cancer. As soon as you hear, “I have cancer,” the first thing you’re going to do is Google – I guarantee – mortality rate. Don’t. Everyone’s an individual. You’re not a statistic, but I obviously did. I looked it up and I compared it to other diseases and it said something like, it has the same mortality rate as pneumonia. I was like, I’ve had pneumonia 3 times. Let’s go.
Did you experience scanxiety?
The first time around, it was a big relief. But I was still on eggshells because they were like, “There’s no cancer but we gotta keep an eye on it.” Going to all those blood tests and taking all those CT scans was a relief, but there was also a good amount of anxiety and paranoia that lasted for well over a year. Then that paranoia wound up being justified.
Going to all those blood tests and taking all those CT scans was a relief, but there was also a good amount of anxiety and paranoia that lasted for well over a year. Then that paranoia wound up being justified.
They said it was a coin flip as to whether or not I would have to go through chemo or have another cancer or go get another surgery. I was spending time with my folks in Las Vegas and they said it was a coin flip. I was like, if there’s anywhere you’re going to take a chance, it’s Las Vegas.
There were 16 tumors in my chest I didn’t feel at all because they were all in that nebulous space in between organs and they were on lymph nodes.
When did doctors discover you had a reoccurrence?
For a year or 2, I was doing the blood tests and the CTs and we were waning down on how often I was doing them. Then the CT comes back and they said, “Yeah, you got some stuff in your chest, including one cherry-sized tumor right there,” which is a scary place to have one.
They scheduled me to go through a laparoscopic surgery because I was firmly against doing chemo if I could avoid it. I’ll do surgeries all you want. I don’t want to go through chemo. That sounds so bad. In hindsight, I probably should have done a couple more months of chemo because I didn’t want to go through that second surgery. But it worked out in the end.
Did you have symptoms with reoccurrence?
I had absolutely no symptoms that second time. I felt nothing whatsoever. There were 16 tumors in my chest I didn’t feel at all because they were all in that nebulous space in between organs and they were on lymph nodes, which I still don’t fully understand. The lymphatic system perplexes me.
The CT scan where they found those tumors was 3 months after the last one I had. Most of them were very small. The one the size of a cherry was the biggest one but they’re going to keep growing if you don’t get rid of them.
How did your cancer reoccurrence develop?
It metastasized from the testicle and into my lymphatic system. A bunch of lymph nodes needed to be yoinked out.
I was talking to my oncologist – I went through about 6 different doctors because I was moving around all over the place throughout all of this. That oncologist said, “The surgery is a very good option. Chemo after the surgery is a good option, but not necessary as long as we keep an eye on it afterward.”
I spent the next 2 years keeping an eye on it. When I finally had my last CT appointment, I was like, it’s over. We’re done.
Did your laparoscopic surgery require any preparation?
Laparoscopic surgery takes a little bit more preparation and effort from patients. They had me go on a hyper-low-fat diet so that my skin was stretchier because they essentially have to blow you up like a balloon, which is horrifying to think of, but cool in practice. One of the incisions has an air tube that’s constantly blowing air so that it can move all the instruments around freely within your chest cavity.
For that, I had to do a month of no fats in my diet whatsoever. That was pretty rough, but ultimately worth it. It made the surgery go quite well. They knock you out and you wake up in a bed and stay there for a couple of days and they make sure that you’re good. I couldn’t eat for 2 days beforehand. It’s not fun but it’s very doable.
How did you feel after your second surgery?
The way that it works is they’re going through your lower abdomen to get up through your chest, so your abdomen is torn up by the nature of the surgery. It hurts pretty dang bad. I sneezed when I was in the hospital, and I started pounding the bed as hard as I could with my fists and my legs. My dad was standing next to me and asked, “You okay?” I was like, “No, my abdomen has been torn up.” It was extremely not fun, but the recovery time doesn’t take that long. I had a month where I couldn’t lift anything above 50 pounds via the doctor’s note, which made balancing work not an option.
Survivorship
His doctor warned him to avoid standup comedy post-surgery
[My doctor] scheduled the surgery 6 days before I was supposed to do a standup show. It was gonna be the first time that I headlined the show. I told my doctor, “Hey, I know I can’t lift anything for a month, but I have this standup show 6 days after. Do you think I could do that?” He said, “Under no circumstances do you do that.” So I did it. I got to say, doing a standup show or just being at a standup show where there are other talented comics, you’re gonna laugh. And laughing when your abdomen is torn up 6 days prior is not ideal. I didn’t tear a stitch, which was awesome, but I feel like it got a little close a couple of times.
That show is definitely the best show I’ve ever done because I told my story about having cancer and how I had Dick Chopp as a doctor, but I left out the part where I got cancer again. Then, I let my head drop right after I did the last joke [and tell them] I still had it and I had 16 tumors in my chest. The audience was so sad for me. Then I said, “That surgery was 6 days ago!” I lifted up my shirt showing off all the new surgical scars that are still a little bit funny. I feel bad for the emotional manipulation but that crowd was very happy at the end of the night.
I told my doctor, “Hey, I know I can’t lift anything for a month, but I have this standup show 6 days after. Do you think I could do that?” He said, “Under no circumstances do you do that.” So I did it.
100%. The only way I could process all of that anxiety and terror was through some creative form. As I said earlier, it’s the most curable cancer. It’s as bad as pneumonia, but that doesn’t matter. It’s cancer. You can throw as many mitigating factors as you want onto it. You’re still going to be like, I have cancer. That is an identity that is thrust on you and totally screws with your head for the rest of your life.
I delayed this interview partially because I was having so much anxiety over some lesions on my arms. I was like, great, I got it again. How am I going to tell my cancer story? How am I going to be an advocate? I go to my doctor and he said, “Dude, you got eczema.” He gave me high-power hydrocortisone and my arms are good now. That was 2 weeks ago.
What has your experience with survivorship been like?
After you’ve got the cancer diagnosis, you do not hear horses when you hear hoof beats after you’ve had cancer, you’re only thinking of zebras. Occam’s Razor is very much a problem that you just have to live with and try to logic your way through. But it’s not going to happen because you’ve had this identity thrust upon you that you never wanted, and there’s nothing you can do about that other than try to get better. Afterward, you’re a cancer survivor or you died. There’s nothing you can really do to change. The fact that you have a new identity is such a problem.
At the same time, you wind up making new friends that you never thought you would make. I went to a big box store one day, and the old lady who was a cashier had a really nice breast cancer pen. I told her, “I love your pen.” She said, “I’m actually a survivor myself, 2 times.” I was like, “Oh! Me too, testicular.” We had a big old hug, high-fived each other, and were like, “Yeah!” There’s a positive community that can be developed as long as you find people that you can relate with in this way. If you don’t find people to talk to, you’re just scared and alone forever, and that sucks. Find people. It’s so worth it. Talk to people. Talk to groups. It doesn’t have to be a therapy thing.
After you’ve got the cancer diagnosis, you do not hear horses when you hear hoof beats after you’ve had cancer, you’re only thinking of zebras.
The importance of sharing your cancer story
It’s so worth getting stuff checked out when you think something is even a little bit wrong. Waiting is just going to increase your anxiety and ultimately make things worse. Things usually don’t just go away.
Some of my friends make a joke about it now. Essentially, when I meet new people, I say, “I’m Ben. Do you want to hear about my testicle?” Because I want to talk about it. I want to tell people about it because it’s way more common than people think it is. People don’t talk about it because it’s about genitals, and that’s stupid to me. Everyone’s got it. Not necessarily testicles, but genitals.
I just keep on talking about it. Some of my friends say, “Ben’s meeting a new person. He’s going to talk about his genitals.” I think it is ultimately a funny story, or at least I’ve turned it into a funny story. It’s the best form of advocacy possible – talking directly to someone and saying, “Hey, this is a thing you should know about and get checked on. It’s worth it. It’s so worth it.” I’ve had multiple people go to the doctor just to do a quick screening after talking to me because I thought there was something wrong, but I didn’t do anything about it and I wound up having it twice.
It’s so worth getting stuff checked out when you think something is even a little bit wrong. Waiting is just going to increase your anxiety and ultimately make things worse. Things usually don’t just go away. We like to think that they do, but they go away after you do something. You gotta be active. You got to be an advocate as well. Talk to people and advocate for yourself and for these communities. It’s not worth being quiet because people will ultimately wind up being a detriment to themselves like I was if you’re quiet.
If I hadn’t had a good healthcare team, then maybe I would be able to call myself a cancer survivor, but I am a cancer defeater. I much prefer to stick a middle finger up to cancer instead of being like, “I lived.” No, I killed it.
Do you still get scans?
I’m done getting scans. It’s been a few years. My doctor said, “If something was going to happen, it would have happened by now.” So I don’t have to go in to get scans right now, but if something’s wrong, I’m going to the doctor.
Do you still experience anxiety post-cancer?
I think there was more anxiety when I was getting scans. Every time I would go in once a month or once every 3 months, it would be a day of dread. Like, this is going to be the day that they’re going to say it. But as long as I feel good, as long as I don’t have any symptoms, as long as I actually go to the doctor and get my eczema fixed to not get freaked out, and as long as I take those steps, the anxiety over cancer is gone.
Being a cancer defeater
I call myself a survivor. Or cured, actually. Personally, I don’t like the term cancer survivor. There’s something that bugs me about it. It sounds like I almost died. I didn’t almost die. I had a good healthcare team. If I hadn’t had a good healthcare team, then maybe I would be able to call myself a cancer survivor, but I am a cancer defeater. I much prefer to stick a middle finger up to cancer instead of being like, “I lived.” No, I killed it.
Age at Diagnosis: 25 1st Symptoms: Grape-sized tumor on neck; hip and pelvis pain; ultrasound revealed tumor on right testicle Treatment: Chemotherapy (BEP), removal of right testicle, lymph node resection (RPLND), and tumor dissection in the neck
Age Diagnosed: 24 1st Symptoms: Fatigue, one swollen testicle Treatment: BEP chemotherapy, surgeries (including complications)
Steven C.Diagnosis: Non-Seminoma Testicular Cancer Symptoms: Enlarged left testicle, tenderness in left testicle, lump in back (retroperitoneum) Treatment: Orchiectomy, chemo, retroperitoneal lymph node dissection
Steven’s Stage 2B Non-Seminoma Testicular Cancer Story
Interviewed by:
Alexis Moberger
As a 21-year-old, Steven put off getting examined by a doctor when he noticed changes in his testicle. Three years later, he knew something was wrong when he noticed a lump in his back.
Today, Steven is a survivor and board member of the Testicular Cancer Awareness Foundation who’s made it his mission to spread awareness through his podcast “It Takes Balls.”
Steven shares his story about being diagnosed with testicular cancer, and undergoing an orchiectomy, chemo, and RPLND surgery to help those like him.
I’m Steven. I live in Virginia Beach, Virginia. I’ve lived here my whole life.
I’m 28 years old, I went to school for media production, and I have a podcast for testicular cancer awareness that I do full-time.
I like to golf because, as you know, I like to lose balls as often as I can.
When did your first testicular cancer symptoms occur?
I don’t know the exact date that things started – I know it was sometime in 2016. I noticed that my left testicle was getting increasingly tender and slowly getting bigger.
The girl I was dating at the time really wanted me to go to the doctor because her dad had passed away from esophageal cancer. She said, had he been checked out earlier, he might have been able to live longer. I said I don’t want to hear the “C” word. Despite saying that, I was still doing Dr. Google. I kept seeing testicular cancer come up and I just did not want to go to the doctor and find out that that was the case, so I put it off.
It never got massive. You hear stories about people who have grapefruit-sized testicles. Luckily, that was not me. I probably would have been seen sooner if it was.
Isaid I don’t want to hear the “C” word. Despite saying that, I was still doing Dr. Google. I kept seeing testicular cancer come up and I just did not want to go to the doctor and find out that that was the case, so I put it off.
What made you decide to see a doctor?
In the spring of 2019, I noticed a lump in my back. I was driving home from work and I felt like my shirt was bunched up. I reached back to fix it and it wasn’t my shirt. I knew from looking at the Internet on Dr. Google and peripherally seeing these things that when it spreads, it spreads to the back or the retroperitoneum. That was when I knew that I needed to be seen because I knew that something was going on.
How old were you when you experienced your first symptoms?
I would have been 21 and then turned 22, depending on what time of year it was. Age never was a factor for me. It was more of I didn’t want to hear the word, so I kept putting it off and was trying to avoid it at all costs.
Did you feel any pain with your symptoms?
I wouldn’t say it was pain as much as it was discomfort. It was not something that I had been used to before.
Testing & Diagnosis
Getting examined and tested
I went to my primary care physician and she did a testicular exam. She said, “I do feel a little hardness in the back. It might be epididymis.” She gave me antibiotics for that but she said, “Just to be safe, I’m going to order an ultrasound.”
That was May 31st of 2019. I remember that day because there was a mass shooting at Virginia Beach’s courthouse and it was a big day for the city and me personally.
The urologist walked in the door and immediately said, “9 times out of 10, when we find a mass like this, it’s testicular cancer.
What were the results of your ultrasound?
My production company was having its meeting for the biggest job that we had had to date. My doctor called me when I was in that meeting and she said, “Steven, they found a mass. I’m going to refer you to urology.”
I went to the urologist on June 10th. I had just turned 25 on the 7th. The urologist walked in the door and immediately said, “9 times out of 10, when we find a mass like this, it’s testicular cancer. I have an opening tomorrow at noon. If your insurance is accepted at the hospital where I’m going to be tomorrow, I can take it out tomorrow.” Then as a formality, he did the blood work for the tumor markers and scheduled the orchiectomy.
From then until now, I think I still feel numb to it. As a survivor, recurrence is one of the things that everybody is afraid of. I just recently had another ultrasound because I thought I was having pain in my remaining testicle. When they were doing it, they asked, “Does that hurt?” I said, “It doesn’t hurt, but it doesn’t not hurt.” I think I’m just numb to the feeling and have PTSD.
Orchiectomy Surgery
Describe your orchiectomy surgery
The orchiectomy is the removal of the testicle. [My doctor] didn’t really go over what the surgery would entail or what it would look like, but they cut in your pubic area, not in your scrotum, and they pull the testicle out that way. It was a pretty easy surgery. I mean, he was the one doing it. I was just laying there asleep. He said it was going to be 30 minutes, so it was outpatient. It was probably a week of recovery.
Did they tell you your diagnosis before or after the surgery?
As I said, when he came in, he said “9 times out of 10 it’s testicular cancer,” but they don’t know for sure until they pathologize it. I don’t remember the exact breakdown.
I know that the Urology of Virginia did their pathology and then we sent it to Sloan Kettering and they came back with close but not exact, which, could just be they were looking at a different sample of it, but it was non-seminoma. That means it was a mixed type of cancer.
Turning a negative into a positive
I’ve always tried to turn negatives into positives. I knew that I wanted to make it my mission to not be down in the dumps about it and to spread awareness.
I never talked about testicles before my diagnosis and since then I’ve talked about it more than people are comfortable hearing. I just knew that I wanted to spread the word and use my story, however far my story went, to spread awareness.
I’ve always tried to turn negatives into positives. I knew that I wanted to make it my mission to not be down in the dumps about it and to spread awareness.
How and when did you start spreading awareness about testicular cancer?
I think it was the first time I went to my oncologist and he said, “This is something that’s not really talked about.” I did a vlog 17 days after my orchiectomy, I went go-karting, and we talked about that. He said, “If you keep up those vlogs, then people might find it and start talking about it.” So I did that.
I wanted to shave my head on my own accord before I lost it from chemo. I did a fundraiser for the Testicular Cancer Awareness Foundation and had connections to one of my action sports heroes, Travis Pastrana, through a mutual friend. I said, “If I raise X amount of dollars, will Travis shave my head?” He’s up in Annapolis, Maryland so it wasn’t a far drive. He agreed. I think I raised 2 or 3 times the amount in just a couple of hours. So we went up to Maryland and he shaved my head.
That got Testicular Cancer Awareness Foundation, Kim Jones the president. We formed a relationship from that. In survivorship, I’ve been on the board of the Testicular Cancer Awareness Foundation and now do a podcast, so it’s been fun.
Chemo & RPLND Surgery
Starting chemo
Because of the mass in my retroperitoneum, I had to do four rounds of etoposide and cisplatin, which is known as 4 times EP. It was 1 week on, 2 or 3 weeks off (depending on my white blood cell counts), another week, and then a break. So I had chemo from July 15th to October 4th.
Before chemo started, they do the chemo debriefing or chemo teaching. They went over everything that could happen. After the first week, I thought, “That was not anything near what they had talked about. It wasn’t nearly that bad.” But they did say that it compounded.
Each week that went on got tougher and tougher. The first week, the first side effect that I had was uncontrollable hiccups. I tried drinking water, I tried everything that I could find [to get rid of the hiccups]. I found on Google, if you drink water from the opposite side of the cup, that it would work. I don’t know if that’s what did it but they stopped after that.
I didn’t throw up until the last week. I remember I was in my kitchen. My parents took turns staying with me. One stayed at their house with the dog and the other came over to my place. I was reaching into my fridge and I immediately turned around and just threw up everywhere. My dad said, “Don’t worry about it. I’ll clean it up.”
Did you take anything for nausea?
I was nauseous the whole time. They advised taking the Zofran that they prescribed me. I took it in the morning, I took it at night and then whatever they gave me daily, helped with nausea.
After chemo, I had a post-chemo CT scan and it showed that the mass in my retroperitoneum had shrunk, but it wasn’t small enough to completely rule out that everything was gone.
My doctor was Dr. Clint Cary at Indiana University (IU), who’s one of the top guys in the United States for retroperitoneal lymph node dissection (RPLND). They got me on the schedule at IU for the RPLND, and I had an RPLND on November 7th, 2019.
Luckily, Dr. Cary called me with the pathology and said what was remaining was scar tissue from dead cancer. There’s no way to know until it’s pathologized. I’m not a doctor, but I believe that teratoma does not show up in bloodwork. So they could have done all the bloodwork that they wanted and they wouldn’t have known that it was scar tissue.
How did you respond to needing another surgery?
I wanted it to be done and I trusted my doctors. I told Dr. Cary before my surgery, “I’m just going to lay here and let you do the hard work.” I was just along for the ride.
I was very thankful to my parents. I was still 25, so I was on their insurance. They did the brunt of the worrying for me and I just rode the roller coaster.
Spreading Awareness
Having a support system
Support is crucial to this, however you can get it. Unfortunately, some people with testicular cancer don’t have the family that they should have with them, because of family issues.
I’m super thankful that my parents, grandparents, aunts and uncles, and all my work people put up with me talking about my testicles the whole time. Them being a sounding board for whatever dark humor I had and being able to do the worrying for me made the journey a lot easier for me.
Support is crucial to this, however you can get it.
How did your work respond to your having cancer?
I’d been through chemo and my work was super supportive. Everybody at work was really helpful. Right before my RPLND, I sent an email to HR to send out to everybody, thanking them for the support. I put in [the email], “Thanks for allowing me to joke about my testicular cancer.” They took out the word “testicular.”
Six months later when I returned, I emailed the HR lady and asked, “What’s up with that?” She said, “Some people could find it offensive.” I said, “I’m the one that had it, and I’m offended that you took it out.” People are still not talking about it as much as they should.
Luckily, on the ground level with all the other employees, it was something that they, hopefully, became more comfortable talking about. They were at least pity-laughing.
Empowering people to talk about testicular cancer
I don’t know how many people are searching for testicles online. Maybe there are some people out there that are doing that, but I think the people who are finding podcasts are the ones who are searching specifically for testicular cancer.
There are some guys that don’t want to share their stories, and that’s okay. They can see that there are people talking about it and it’s not something they need to stay in the shadows about. Maybe one day they’ll feel comfortable talking about it, but right now is not the time. For them to see these stories, hear other people that have been through it, and know that they’re not alone, is important.
Do you still get “scanxiety”?
Scanxiety is a real thing. April is Testicular Cancer Awareness Month, and I like to say that I’m very aware. Even though I talk about testicular cancer all the time, April gets me. I really start feeling like, “Is that lump back in my back?” I think it’s just my mind playing tricks on me, but it’s important to get checked out if you feel things.
I just had another ultrasound last week and luckily it was all good, but it definitely messes with your head a lot. Before blood work, you get nervous.
I’m hypocritical in that I was feeling something for a while and it took me a while to get in. My mom and my wife were both really pushing me. That’s where the network around you is good too. Even if you’re feeling something, you’re still afraid and have PTSD, like I do, having those support people around you who can, say “You need to go get checked out. I’ll make your appointment for you.” I made my own appointment, I’m a big boy. But, that’s important.
Even though I talk about testicular cancer all the time, April gets me. I really start feeling like, “Is that lump back in my back?” I think it’s just my mind playing tricks on me, but it’s important to get checked out if you feel things.
What would you say to someone who hasn’t been examined by their doctor?
People who are at the beginning stage, feel something is wrong and haven’t yet been seen, I would say, go be seen. Worst case, the doctor feels your nuts and it’s an awkward situation for you. It might feel awkward to you, but it’s not for them. They do that all the time.
Early detection is going to save lives. It’s not going to save every life, but it’s going to save you from at least having further metastasis. You can catch it early. It won’t spread to the retroperitoneum, like me, if you catch it in the testicle. Early detection is really important and there are resources online to show how to do a self-exam.
Self-exam is not about finding something on the first try, but the goal is to familiarize yourself with what your normal is. Then, if you find something that is not normal, then you know right away that you have to go get seen.
Where can people learn more about testicular cancer?
Testicular Cancer Awareness Foundation on Facebook.
@testescancer on Instagram and Twitter.
You can see the podcast, It Takes Balls, and regular self-exam reminders.
Supporting others and finding support
I have not been to therapy but I did have a therapist on the podcast recently and it’s definitely something that I’d be open to. My doctor gave me the contact information of other patients that he had. He asked them for their permission as well.
I reached out to one of them, but there have been other guys that he’s given me their numbers when they’ve been going through it, as I’m a survivor. We’ve got a local testicular cancer group chat that is going and we say, “We got a scan coming up.” “Good luck.” It’s important and it’s helpful.
Testicular Cancer & Fertility
Advocate for banking sperm as early as possible. Don’t let them start chemo before you bank sperm.
Banking sperm and checking testosterone levels
I don’t know that the norm is to bank sperm before orchiectomy. I know that they like to turn around and do the orchiectomy quickly. I would say, advocate for banking sperm as early as possible. Don’t let them start chemo before you bank sperm. If you can bank some before your orchiectomy, that could be helpful.
I don’t remember having my testosterone level checked before my orchiectomy, but testosterone is something that can be affected by losing a testicle. You only need one to make it, but the levels can change, and having that kind of base will be helpful in seeing if something’s off down the line. I think I only got mine checked a year and a half later, so I don’t have a baseline of what my normal was before that.
How did you decide to bank your sperm?
After the orchiectomy, they scheduled sperm banking. One doctor I talked to recently – his episode of the podcast will be out May 1st – he advocates for having it earlier. He said, in some cases, there’s no sperm before the orchiectomy because the testicle is doing whatever it’s doing. Definitely get it as soon as you can.
That was one of the things that were scariest for me – I’d always wanted to be the T-ball coach – and losing my hair were the big things that I was most afraid of. Banking was a no-brainer for me. Hopefully I don’t have to use it.
RPLND and fertility
There is a risk with the RPLND (retroperitoneal lymph node dissection) to have a side effect where they accidentally, or out of necessity, cut the nerve that controls the ejaculatory function. That can cause retrograde ejaculation, then it’s going to be more difficult to conceive naturally.
I hope I don’t need to use my bank sperm. I think everything is working as it should now, but we’ll see how it goes.
As far as the RPLND and the retrograde ejaculation go, I would advise going to, what they call, a high-volume center. There are only so many urologists in the world or in the country and there are only so many testicular cancer cases. Even fewer than there are urologists. They might not see testicular cancer all the time and [they] do an RPLND even less.
Where I went at IU, Dr. Cary is one of the best guys in the country to do it. It’s not a guarantee, but it’s more likely that they will do what they need to do to avoid retrograde ejaculation.
Reflections
Can you recommend doctors who specialize in testicular cancer?
On the TCF website, we have Dr. Phil Pierorazio – he’s chief of urology at Penn Presbyterian. His contact information is on the website. Dr. Nicholas Cost in Colorado – his information is on there.
Dr. Larry Einhorn at IU. I think he’s in his 80s now, but he pioneered chemo for testicular cancer and has saved an immeasurable number of lives. He’s usually pretty good about responding to emails. My mom emailed him a few times and asked questions and he gets back within 24 hours. His contact information, if it’s not on the website, join the support group and people will gladly give it to you.
There’s Dr. Aditya Bagrodia in San Diego. There are a bunch of them all over the country who do this stuff regularly.
How has testicular cancer changed your outlook on life?
There’s been so much good that’s come out of it. I’m doing things that I never would have done…I’m trying to live my life more to the fullest than I was before.
Having had testicular cancer, I don’t think it was the worst thing to ever happen to me. There’s been so much good that’s come out of it. I’m doing things that I never would have done. For example, I just took a stand-up comedy class. In high school, people who knew me never would have thought that I would do something like that.
There are good things that can come out of this. You have a new lease on life. After sitting in the chemo chair for 4 to 6 hours a day, you wish you could be doing anything else. I’m trying to live my life more to the fullest than I was before.
Age at Diagnosis: 25 1st Symptoms: Grape-sized tumor on neck; hip and pelvis pain; ultrasound revealed tumor on right testicle Treatment: Chemotherapy (BEP), removal of right testicle, lymph node resection (RPLND), and tumor dissection in the neck
Age Diagnosed: 24 1st Symptoms: Fatigue, one swollen testicle Treatment: BEP chemotherapy, surgeries (including complications)
Steven C.Diagnosis: Non-Seminoma Testicular Cancer Symptoms: Enlarged left testicle, tenderness in left testicle, lump in back (retroperitoneum) Treatment: Orchiectomy, chemo, retroperitoneal lymph node dissection
Matthew’s Stage 3C Non-Seminoma Testicular Cancer Story
Matthew shares his stage 3C non-seminoma testicular cancer story and undergoing treatment, starting with BEP chemotherapy and ending with a rare situation: multiple surgeries.
He shares about the complications to highlight how he grew resilience from his difficult cancer experience, as well as topics like navigating hair loss, fertility preservation, the support that meant the most, and finding a new purpose in life. Thanks for sharing your story, Matthew!
You need to be the one to have the courage to go forward. That’s where faith comes in and where you believe in yourself, having the courage to push yourself forward.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Cancer can go one of two ways. You can let it define you or you can grow through it and learn through it, become a better version of yourself.
There were a lot of ups and downs, resilience and perseverance. At the end of the day, I’m very grateful for the experiences that I learned. I decided to share my story, but more importantly, the lessons I learned along the way to your audience today.
Matthew Ode
Video: Matthew on Getting Diagnosed
Path to Diagnosis
Tell us about yourself
I was a personal trainer, very healthy at the time, working out six or seven days a week, eating almost to a T, counting my calories and my macronutrients. At the time, I was a personal trainer and wellness director.
My life was dedicated to my health.
I did have anxiety. I was 24 years old, I had just gotten done with college, and had no idea what I wanted to do with my life. I think that brought a lot of anxiety to my life.
When I say anxiety, I would have panic attacks and things like that. I was able to overcome that just before I was diagnosed with cancer. My life was predicated on health.
Also, it was a few months before I was diagnosed when I met my girlfriend, Lauren, who’ll be a vital part of this story.
How did you learn something was wrong
I had just started dating Lauren, my girlfriend. It was around May or June. We started doing all these summer activities together. We’d go hiking, kayaking, pretty much everything, especially as a brand new couple.
All of a sudden, I started to notice these minor back pains. I was in the best shape of my life, lifting a lot, working out a lot, so I thought it had to be the workouts. As the weeks went by, as the months went by, it got worse and worse.
Of course, at 24 years old, you think you’re invincible. You’re stubborn, you don’t want to go to the doctor.
Lauren was saying I wasn’t the same person I was before. She wanted me to go to a doctor to get checked out. I didn’t want to so I scheduled an appointment with a chiropractor. They tried to adjust me but still the pain got worse.
It got to the point where it was extremely hard for me to even get up and walk. This was early August now, and I was still crazy stubborn. Every time I went places, I’d just complain about my back over and over again.
What got you to finally go to the hospital
One night I was over at Lauren’s house and I ended up puking up blood that night. Right away, that was the signal to go to the hospital.
I got rushed to the emergency room. They did a blood test on me and found I had lost two-thirds of the blood circulating in my body, which is equivalent to a gunshot wound.
They gave me six bags of blood and then rushed me into an emergency surgery to figure out what was causing the bleeding.
They thought it was an ulcer when they went into the emergency surgery and performed some blood tests. I wasn’t just puking out blood but it was also coming out in bowel movements.
When I woke up the next day after surgery, I thought I was okay. They had given me six bags of blood which really reenergized me. When I had gotten to the hospital, I could barely walk. I was so dizzy and tired, I could barely even see.
Your hemoglobin should be around 15 for a male and I was at 4.5 to 5.0. They said anything under 5.0, you shouldn’t even be awake, and I was right there.
Testicular Cancer Diagnosis
When did you get the initial cancer diagnosis
The next morning when I woke up, I’m thinking it’s all over. My doctor walks in, sits down with me, and as soon as I saw him with that blank stare in his eyes, I knew something was completely wrong.
He sits down, grabs my hand, and says, “Matt, we found an 11-centimeter tumor in your small intestine. We don’t know which cancer it is yet but we do believe it is cancer. We have to rush you to the main campus of the Cleveland Clinic immediately.”
I live in Cleveland. Thank goodness I have one of the best hospitals in the world right at my doorstep. Within a day or two, they were doing anything they could to get me to that hospital. That’s where they did a ton of tests to figure out what type of cancer I had.
They did an ultrasound, blood work, and I couldn’t tell you everything because I was out of it, in so much shock. I didn’t really know what was going on.
When did you find out what stage of cancer you had
After a day or so, they came to me and told me that I had the highest stage of testicular cancer, which is stage 3C.
A lot of people say they have stage 4 cancer, but I asked my oncologist multiple times and he said there’s actually no stage 4, it’s stage 3C.
Usually they track your blood marker, so they have what’s called your AFP marker. It’s a blood tumor marker. You want it to be under 5, I believe, to be considered okay and healthy. Mine was over 65,000. It was so high, it was off the charts.
How did you process the testicular cancer diagnosis
There is a lot of story of resilience in there. When I was first diagnosed, it was just my parents who were there at the appointment at the time. Lauren didn’t know, nobody knew, it was just me and my parents in that room.
I remember looking at my parents and they’re crying. I’m very faith-based, so I’ll share my story this way, to each their own on their faith. But I really think God put this strength in me, the second I heard that news. For some reason I told myself, I’m going to be strong for my parents, for Lauren when she gets the news, for my friends and family.
I started looking at life as everything is happening for me, not to me.
What I mean by that is if you start looking at life as everything is happening to me, you start making excuses. You start blaming other people. You start letting cancer define you.
When you start saying, “How is this happening for me?” Then you can learn and grow from it. It’s unfair and unexpected, but guess what, I am dictating my happiness throughout this journey or my mental and emotional strength.
I said I would use this as a lesson and grow through this experience. Yes, I’d have ups and downs, but I had that mindset.
Guidance: embrace and process your emotions (especially men)
All my emotions came out when I saw Lauren. Be willing to express what you’re going through. I said I was going to be strong for my parents, Lauren, my family, and I was.
But at a point, once I got to the Cleveland Clinic is when I saw all my friends and family. Once I saw Lauren, I was so nervous because I didn’t know if she still wanted to be with me. We’d only been dating for about three months at that point. To put that burden on her, I understood if she didn’t want to be around.
Not only did she say she’d be around, she would be there every step of the way. I remember hugging her and then letting all my emotions out. It was like all this baggage that’d been on my shoulders was released.
I want to talk, especially to the men out there, it is okay to express what you’re going through, to share your vulnerability and your emotions. That is what allows us to relieve the anxiety, relieve the depression. Relieve the stress in our lives, by expressing our emotions to those we know, like, love, and trust in our lives.
That’s what I needed to do. It was a big push and it really made a difference moving forward.
My parents had gotten in contact with Lauren, so she knew about the cancer by the time she saw me. For me, the only person I called was my best friend, Anthony. That was really tough. Hearing him cry, I was still in shock so I wasn’t exactly crying.
It was really phone-tagging people left and right. There were no rooms at the Cleveland Clinic at the time, so they brought me into an ICU room. You’re only allowed to have two or three visitors in the ICU, but at the time they knew what I was going through and they had curtains around, so we had 15 people come in.
It was all my friends and family, people just flooding in, back and forth, once I got to the clinic. It really helped having such incredible people in my life.
Any guidance on how to break the news to others
I need the support. When it comes down to going through challenging moments in my life, the one thing I realized is I cannot fight these battles alone. That’s me.
I understand some people don’t want to overwhelm other people in their lives, but in my opinion, by not telling them and having them figure it out later is going to make it even worse for them.
My thought is you don’t have to tell the world, just first tell the people you really love and care about. When you feel more comfortable opening up about it, go for it.
Between my parents, Lauren, and my best friends and family, I needed that in my life. I think it’s so important because at the end of the day, these battles fought alone is not only lonely, but it’s almost impossible to get through.
The ultrasound is no different than getting one during pregnancy. They put gel on you and go across your stomach. Mine lasted a good hour. They needed to check several different areas.
I know it had to do with figuring out where certain things were forming and how they were forming, so they performed the ultrasound on my stomach and my testicles to make sure they knew where the cancer was and to spot any irregularities happening in my body.
Describe the blood work done
That had a lot to do with making sure it was not a blood-related cancer. Also, my AFP (alpha-fetoprotein) markers were detected through blood work.
They found out my AFP was crazy high, which is related to testicular cancer, so more testing gave them the avenue of figuring out that testicular cancer was what we were dealing with.
Sperm banking before treatment
As soon as they found out I had testicular cancer, they said that with surgeries and treatment, there was more than a 50-percent chance that once I went through it all, I might not have kids. At least not in the natural way.
So I went through two rounds of sperm banking. It’s awkward but you get it done. I think it’s so important. It can get expensive, but you have to look at it this way.
If you’re looking at kids and you want to have a future with your own gene and genetics, do it.
It’s a tough decision. It was weird. I had only been dating Lauren for three months. They wanted us to have this conversation with each other.
I was like okay, I guess we’re going to have this conversation then. She and I talked and figured we absolutely needed to do this. We hadn’t been talking about kids before that time.
Cleveland Clinic did it for me, they have everything set. They do everything. So the medical team said they had me there, they’d get me in the right place. We haven’t talked to the fertility specialist yet, but we will soon, most likely within the next couple of years.
I’m not sure of all hospitals, but I think most big hospitals will at least point you in the right direction or they have the facilities there.
Any guidance on paying for the procedure
I was very lucky because my parents basically said they’d take care of this for me. I don’t know the exact cost but I know it’s about a couple-hundred a month to store it.
Video: Matthew on Chemo & Surgeries
Chemotherapy & Side Effects
How did doctors describe the treatment plan
With the clinic, they’re so incredible they have a couple specific testicular cancer oncologists. They linked me up with the best one they could get, Timothy Gilligan. He’s a great guy and very personable.
I was immediately put on what’s called BEP chemotherapy, which is bleomycin, etoposide, and cisplatin. They did not hesitate. When they found out I had testicular cancer, I was on the chemo that day.
They said they needed to get me into the chemo room and kept me in the hospital room for six days to make sure there was no complication.
They didn’t want to see anything go wrong with the chemo and wanted to make sure it was doing its job, as well.
Describe the overall BEP chemo treatment plan
I ended up going through five rounds of BEP. Since my testicular cancer was so aggressive, they had to add an extra round. They usually do four rounds of BEP chemo.
There were five days, Monday through Friday, of etoposide and cisplatin. Then I had just one Monday of bleomycin because it’s a very strong drug. It really hits your lungs hard in your body.
Then you get a week off, and then repeat it all over again. So it was a two-week process, five rounds, lasting two-and-a-half to three months.
What were the side effects you experienced
Monday through Friday the first round, toward Friday I could feel it for sure. I started feeling tired and a little week. On Day 6, I was like okay, I’m not feeling great but I can walk a little bit.
Then Day 7, I was a total train wreck. When I say fatigue, I mean not getting out of bed.
Number two, they constantly put me on nausea medication so I was really lucky because I’ve heard crazy stories of nausea and having those symptoms. I made sure I took my nausea medicine.
Because of my anxiety, I also started to get some rashes on my stomach and my chest when I would get the chemo. This was closer to the third and fourth round.
I would remember freaking out and getting these rashes. The doctors would come in and say they looked like stress rashes, but assured me they’d pay attention to them. They’d give me ice to put on my neck and I’d calm down, then the rashes would go away.
I was also neutropenic. I couldn’t eat pure fruits or vegetables because they carried bacteria, so I could avoid getting sick.
Chemo was not easy, don’t get me wrong, I lost my hair within Round 2, but I didn’t have anything that was absolutely detrimental during chemo. I was lucky in that aspect.
When were the chemo side effects the worst
They told me Day 7 would be my worst day of side effects because what happens is all of the drugs are trying to get out of the system within a day or two, and your body is fighting everything it can.
BEP is one of the most intense chemotherapies. The reason they did it with me is because I was so young and could handle it. Day 7 comes along and I remember waking up and like, whoa, I cannot even move.
I felt like total death. At that point, they had released me on Saturday after the Monday through Friday of chemo. Sunday is when I felt so terrible and it was rough.
Describe getting chemo infusions through IV
They didn’t want to do the port in the beginning. They thought I could get through all my chemo without it. I had really good veins because of how much I lifted weights.
The first four rounds of chemo I went through was infusion by IV. They would find good veins in my arm and make sure I have good blood return, then they could put saline back into the system. Once that was all good, they would give me the chemotherapy.
The cisplatin and etoposide infusions lasted about three to four hours altogether. I’d just sit there and get pretty tired. I was extremely nervous the first day I went in but I knew that this is what I had to get done, what I needed to do.
Bleomycin was really short, maybe 15 minutes. It was not long but bleomycin is a very powerful drug. The chemo destroys everything in your body, good and bad cells.
Getting a port for last chemo round
Bleomycin is on Monday, Day 8 of my chemo, when I feel absolutely trashed. Day 7 is the worst and Day 8 is second to that.
That was the day this happened. I am in a wheelchair, I cannot walk, and am so exhausted. They go in to prick me, and they missed. They do it again and miss five times. They said they couldn’t do any more.
I was on the verge of passing out. With chemo, my veins just got shot. There was no blood return, nothing. That’s what chemo will do to you, especially ones like bleomycin that are so powerful. They destroyed my veins.
The next day my oncologist told me I needed to get a port and then they’d get me onto chemotherapy. I went in for the port surgery, got it done, and it was the best thing I ever did.
For a lot of us, it’s challenging, but it was definitely the best thing I ever did.
Guidance on getting through the near week-long hospital stays
You have to look at the bigger picture. I know it’s tough in the moment. A lot of times we get so caught up in the moment thinking about three-day hospital stays, ten-day hospital stays, when will I ever get out of this?
Think of it this way: it’s setting you up for something bigger in your life.
Yes, it’s tough in the moment, but I was relying on my faith and support system, focusing every single day on one little thing that could help move me forward to getting out of the hospital or getting me to where I needed to be.
It might be getting up and walking on a day I feel a little better, or eating something and getting some calories in my body, whatever it was.
That really helped me to relieve a lot of emotional stress of being in the hospital all the time. I was keeping myself busy and trying not to constantly focus on the negative parts of this journey.
It was a tough first week mentally because I was still wrapping my head around a lot of the things going on. As I was doing it, I had Lauren and my parents with me. That really helped me a lot. It was a lot to go through.
I have red hair so losing that hair was really challenging. I ended up losing the hair around the second round.
In the middle of my third round was my biggest mental hurdle for sure.
I ended up losing my three-year-old puppy because he had cancer. I took him to medical appointments before I was even diagnosed. He and I were fighting this battle together.
That was my first bout of saying everything was happening to me, not for me. I started to blame God and not want to go to chemo. I was so upset for four to five days because I thought the universe hated me. I thought everything was going wrong.
That was a big turning point in my life because I remember the day I was lying in bed, looking up, and thinking if this is what Duke, my puppy, my parents or Lauren would want me to do? Give up on myself?
The answer was absolutely not.
That day I got up and just did something small. One little thing every single day just to get me to eventually get out of chemotherapy. It was a big mental shift for me.
Describe managing the hair loss
Eventually the hair started coming out in clumps. I started looking like Gollum from Lord of the Rings! It was really bad but I kept some humor in it.
I had this crazy dirty mustache with a little bit of hair and said I was going to keep it while I shave my head, for however long I possibly can. I didn’t know how long it’d be but I’d do it for as long as I could.
All my friends noticed and said they wouldn’t let me do that alone. They all grew mustaches, all my guy friends and dads, throughout my chemotherapy. It was really cool and so powerful.
It was amazing to see that. Yes, it was really challenging because I was afraid of showing my bald head in public, I was wearing hats for two weeks at least.
Eventually, I realized there was nothing to be ashamed of. I think so many of us, and this can go in any direction in life, not just cancer, we’re afraid of what other people think of us that we literally dictate our lives around other people’s opinions, actions, and thoughts.
I thought look, I’m going through cancer. I’m going to express this, I don’t care if people come up to me or look at me weird. I don’t care. I’m going to do it for me, that’s it.
I stopped wearing hats and it was a big opening for me to relieve that pain that I’d been going through for a lot of years in my life before cancer, needing constantly to fit into certain groups or being around certain people.
The hair loss was really challenging. I know for women it may be even more challenging. I’m very empathetic to that. Cheers to you. I understand why there are so many people going different directions with the hair loss.
Any last guidance on recovering from chemo at home
If you have somebody who’s there for you, make sure they help you stay on top of things. My dad was like a second nurse to me. He knew everything. As crazy as this is, throughout my journey, nurses would come in and ask if my dad was also a doctor.
He’s one of those people who needs to know all the information. When he does, he’s very smart and intelligent, and always stays on top of things. He would make sure I took all my nausea medication.
You don’t have to have someone like that, but have someone in your life who will help you because there will be days where you easily forget things.
It’s such a challenge because you just want to be able to get up and do things. On the days I started feeling good it sucked because I’d have to go right back to chemotherapy. The next Saturday and Sunday I’d feel much better.
For me, some days I’d even go to work. For some, you can go to work. Go out and do things, live your life. If you’re feeling good that day, don’t sit around. Go out and go for a walk, go to work, just be present.
I know COVID-19 has been challenging for a lot of people right now. You can’t go places because of your compromised immune system and you have to be careful, but just get outside the house and walk outside. Fresh air is the best medicine there is.
For me, it was going to work or being around other people and making sure that I wasn’t just sitting around and moping all day.
How did you process the end of chemotherapy
It felt like accomplishing Mount Everest, in a sense. It was such a tough whirlwind of almost three months. I had all the nurses sign the “End of Chemo” certificate with the date on there, November 21st, three days after my 25th birthday.
For my birthday celebration, my friends threw a surprise party for me and there were about 50 people who showed up, it was incredible.
Three days later, I felt like okay, it’s downhill from here. That’s what I thought! I was thinking about crushing the next step, let’s do it, I know I potentially have to have a surgery but let’s go for it.
It was a really good day to celebrate and to just put life into perspective for me. It put life into the perspective of all of the things I used to worry about, all the people I used to try to please, or all the things in my life I thought were so important, they just weren’t.
You realize all the people who truly are important in your life, you realize the events that are really important in your life, and you realize that it’s not as many things as you think.
When you narrow it down, it’s very simple but we overcomplicate things in life.
Surgery & Complications
How did you learn you needed surgery
About three weeks later, my oncologist said there was good and bad news. The good news was that my tumor shrunk from 11 centimeters to three centimeters.
The bad news was that my tumor was wrapped around the inferior vena cava. That’s the central vein that goes from the bottom of your upper body to your heart.
My oncologist said we’d need to do a ten- to twelve-hour surgery with four different surgeons involved to remove the tumor, potentially remove the vena cava, and all the cancer in my body.
They scheduled an appointment two weeks later for the surgery. Those two weeks were some of the longest days of my life.
I wanted to get it over with, there was a lot of stress and anxiety. Finally, the day of surgery came.
What I want to share is this is not the journey you will be going on. I’ve never heard anybody go through this journey that I had to go through.
For me, I think I’m crazy and I think it was God saying I need to put you through this insane journey in order for you to do what you want to do with your life, in order to have the perspective and have the vision that I need you to have.
I’m more or less sharing this for the message of resilience, and giving you hope and positivity for whatever you’re going through. This is not to say this will happen to you.
What do you remember from waking up from surgery
I get the surgery, about 11 hours long. I remember I was with Lauren, saying good-bye to everyone, including my grandmother, my aunt, my dad, and Lauren. I got into the surgery.
Next thing I knew, I was waking up three days later. Going into the surgery, I was around 145 pounds, so I’d lost about 40 pounds throughout chemotherapy.
During the surgery, they had opened up my hip left to right, took out the vena cava, rest of the cancer and tumor, and when I woke up, I was close to 200 pounds.
What had happened was my body went into this survival mode and caused massive swelling in my stomach.
I remember waking up, not being able to move or do anything. I was asking my doctor if this was normal. He said it wasn’t, but the draining should eventually come out of my stomach.
Falling into two comas
A week goes by after I left the hospital, and throughout that week, when I was home, I never felt right. I felt something was totally off. I knew it had been a big surgery, but there was something not right.
As the draining was coming out of my stomach, all of a sudden, it just stopped. Immediately, I was in so much pain that they had to rush me back to Cleveland Clinic.
They ended up having to drain seven liters of fluid out of my stomach, caused me to go into a complete kidney and liver failure, I had a cone drilled inside my head to relieve potential brain swelling, i had a catheter in my chest and in my neck, because they thought I’d be on dialysis for the rest of my life.
I ended up falling into a two-week, non-induced coma. I won’t go into crazy detail, but long story short, I ended up being in the ICU for more than 40 days. I ended up being in the hospital for 53 days total. A week out of my coma, they went to go take out the catheter in my neck after taking out my breathing tube.
I end up having an arrhythmic heartbeat as they’re taking out the catheter, and am going into cardiac arrest. They had to do eight minutes of CPR on me and I had to go into another one-week coma.
Waking up
When I woke up, it was Valentine’s Day. January 6 was my first surgery, I went back in two weeks later, and now it’s February 14. After that, I remember waking up and saying okay, I have to relive my entire life again. I couldn’t move my fingers or anything.
I remember waking up to flowers and hearts. Lauren and my parents never left that room for those two weeks, they did not leave it when I was in my coma.
When I got out of my coma, my dad never left that room. Lauren and my mom would have to go and do some things. When I went into another one-week coma, it happened all over again. There was so much support, with people coming in and praying for me.
When I was in my first coma, my mom had people go to church and had these massive prayer services. She did three of them where hundreds of people would pray for me.
In the middle of the last prayer service where people prayed for me is the day I woke up from the coma. I woke up with Lauren holding my hands. Every day she’d walk up to me and hold my hand, saying, “Matt, wake up.” She’d tried to see if I would wake up.
For me, all this was God saying that this wasn’t the end of my journey. It was the beginning.
How did you learn you had no evidence of disease (NED)
My urologist told me about the no evidence of disease, as he was the one who performed all five surgeries on me.
Significance of day you were discharged from hospital
When I was released from the hospital after 53 days, it was March 17, 2017. The coolest part about it is I had met Lauren on March 17, 2016, exactly one year from when I was released from the hospital.
I know it’s not a coincidence. I think that was God putting an angel in my life. Sometimes we need to recognize who that person is in our life. When we do, sometimes we take them for granted.
We can’t take that person for granted too much. We have to really appreciate them being in our lives.
What was the follow-up protocol
It was every three months to start for the first two to three years. Then it got to six months. Now, it’s more like eight months.
The cool part about it is since I am four years officially cancer-free, with testicular cancer, unless they see something weird, I don’t have to do another CT scan again. It’s only blood work moving forward, which is awesome so I don’t have to go through the radiation part of it.
Video: Matthew’s Reflections
Reflections on Cancer
Recovering at home from so many surgeries
Coming out of that hospital was not rainbows and butterflies, it was a challenge. I was 110 pounds, I was skin and bone. I had an open scar across my stomach.
The problem with me is I didn’t have the nurses and the doctors to hold me accountable anymore. I had to do all my physical therapy on my own. I started to, for a good two weeks, get into that excuse mode.
Within two weeks, I was back in the hospital with a standing heart rate of over 150 beats per minute, my fever was over 102-degrees, my blood pressure was through the roof. I stayed there for a good three to five days to get everything done.
When I got out of the hospital, I sat down with Lauren. We had a discussion about how if I would keep making excuses and not take care of myself, I wouldn’t be here next month or six months.
It wasn’t a bad conversation, it was exactly what I needed.
I probably cried a good hour-and-a-half that night. I let all my emotions out.
The next day, I got into my little weight room at my house and picked up a five-pound dumbbell, and started doing bicep curls. The next day, I did the same thing, walked a little farther, and every day it was just compounding and compounding.
Eventually, I started gaining some weight. Then my mental attitude started to get stronger. I started to look at life as a lesson and as a growth opportunity.
After one year, my wound finally healed. My skin grew over it. After two years, my strength started to come back. I told myself that I would not let myself down. I would work my butt off every single day. I focused on consistency and using my dedication to never giving up on myself.
After about two-and-a-half to three years, I was able to take care of my mental, emotional, and physical health. I wondered what was next for me.
Cancer led to your new purpose
I think for a lot of us survivors, even if you’re going through cancer right now, you could start to feel this or will start to ask, what is next?
I didn’t go through this crazy challenge just to go back to my normal life. I have something so much bigger to offer to this world, but I had no idea what to do.
I started to surround myself with like-minded people. The biggest thing that ever happened to me in my entire life is if you want to change the direction of your life, be around people who are going to help you get there.
I don’t want this to sound bad or mean, but I had to stop hanging around with certain people I used to all the time who wanted to go and drink every weekend.
I had to stop listening to people who really loved and cared for me and thought I was crazy for not going back to my nine-to-five job, and for wanting to do something bigger with my life.
What I got around was entrepreneurs because they all had this growth mindset of having a vision and wanting to get there. If you have a big dream in your life, the only person who’s going to believe in you at first, is you.
You need to be the one to have the courage to go forward. That’s where faith comes in and where you believe in yourself, having the courage to push yourself forward.
You turned this new purpose it into your work
As I started sharing my cancer story like I am now, people were like okay, you need to get that story out to the world and become a motivational speaker. So I started my own LLC and I became a keynote, motivational speaker.
I was talking on stages and on Zoom calls, then COVID-19 hit. It stuck a wrench in the plans so I asked what was next. We all have setbacks and different directions we go in in our lives.
I started coaching other survivors and I started coaching other patients to do exactly whatI’m doing now, figuring out our path in life.
It brought me to so many avenues. I just created a Facebook group for cancer patients, survivors, and caregivers of all ages.
I was really nervous. It took me three months to have the courage to do it. We now have more than 1,100 people in the group and it is just absolutely incredible. I can’t explain it.
That’s my journey of resilience and how cancer has really brought me to figuring out what I want to do with my life. I’m not saying you have to go on these grand stages or anything.
Maybe it’s being a better mother or father, or putting perspective and gratitude into your life to just become a better version of yourself, maybe helping one or two other people on the way.
True happiness comes from giving back to other people in a way that you’ve learned from an experience you went through, a challenging experience.
One of my favorite acronyms is “H.O.P.E.” It stands for “help one person everyday.” It doesn’t have to be anything massive, it’s just doing something to make an impact in this world. You’ll bring a lot more joy and happiness to your life.
Describe the significance of the support you received
This 5K was very special. It wasn’t just about this 5K. This is when I grew that mustache and all of my friends grew mustaches, too.
When I finished chemotherapy, my dad said we’d host an event Thanksgiving morning, because I finished chemo on November 21, and have people go to Cleveland for a Turkey Trot.
It’s a 5K or 10K race where thousands of people show up. It happened at seven in the morning, it was 34-degrees, we had no idea how many people would actually show up. It’s okay, we’ll give them free t-shirts.
We had more than 400 people show up to this event, which absolutely astonished me. It was incredible! We ended up calling the event, “Mustaches for Matt.” That is the reason, because I lost all my hair, so everyone grew mustaches.
It was really powerful because all the girls wore fake mustaches and the guys grew mustaches. I didn’t even know 200 of the 400 people who were there, just to show how much support and love there was.
You have so much more love and support in your life than you could ever imagine and you don’t know about.
They told me people were praying for me around the world in Africa, Europe, Asia, Australia. How did my story even get out there?
It just goes to show the power of having people in your life and having that support.
That picture was the third time we did the 5K. Every time, we’ve had hundreds of people show up and wear the shirts. It was special because I had to learn how to walk again and to live my life again.
That one was my very first time running the 5K after cancer. To do it holding Lauren’s hand was just too powerful and very emotional. It was an amazing day.
I was about to host my own Mustaches for Matt race and bring money to charities, but unfortunately COVID-19 hit and we couldn’t do it. Hopefully one of these next years, we’ll be able to get it back up and running.
What’s your last message to other cancer patients and caregivers
You have so many opportunities in your life to do great things for yourself. Don’t be afraid to go after them.
It’s scary at first but just take that leap of faith and you’ll be amazed at what it can do for you.
Thank you for sharing your story, Matthew! Join his Facebook support group by clicking here.
Age at Diagnosis: 25 1st Symptoms: Grape-sized tumor on neck; hip and pelvis pain; ultrasound revealed tumor on right testicle Treatment: Chemotherapy (BEP), removal of right testicle, lymph node resection (RPLND), and tumor dissection in the neck
Age Diagnosed: 24 1st Symptoms: Fatigue, one swollen testicle Treatment: BEP chemotherapy, surgeries (including complications)
Steven C.Diagnosis: Non-Seminoma Testicular Cancer Symptoms: Enlarged left testicle, tenderness in left testicle, lump in back (retroperitoneum) Treatment: Orchiectomy, chemo, retroperitoneal lymph node dissection
