Hugo’s Stage 2B Embryonal Carcinoma, Non-Seminoma Testicular Cancer Story
In his story, Hugo, an AYA (adolescent young adult) cancer patient advocate, highlights managing through losing his hair from chemo and how he approached fertility preservation. Thanks for sharing your story, Hugo!
- Name: Hugo T.
- Diagnosis (DX):
- Testicular cancer
- Embryonal carcinoma
- Testicular cancer
- Staging: 2B
- Age at DX: 21 years old
- 1st symptoms: Pea-sized lump on right testicle
- Testicle removal surgery:
- Radical inguinal orchiectomy (removal of right testicle)
- BEP – originally 3 rounds at 3 weeks each, stopped B after first round; EP for 4 rounds
- Bleomycin, etoposide, cisplatin
- Retroperitoneal lymph node dissection (RPLND Surgery)
- Testicle removal surgery:
- Second Cancer: Colon cancer, stage 1
I knew nothing about cancer. It was one of those things. I thought, ‘I’m young, so that should be a good thing. I’m sure it will be okay.’ It wasn’t until I broke it to my parents and told people that I realized.
Saying, ‘I have cancer,’ and hearing other people’s reactions made me realize this was more serious than I initially thought.Hugo T.
- Treatment Decisions
- Chemotherapy & Side Effects
- RPLND Surgery & Remission
- Quality of Life
What were your first symptoms?
My symptoms started back when I was 21 years old. I had six months left before I graduated. I’m in the Australian Army. Cancer wasn’t really on my mind as a young 21-year-old. I was pretty fit and healthy.
I just noticed a small lump on my right testicle. It was painless. It was kind of like a frozen pea, and it was sitting on my right testicle. Because it didn’t cause any pain or discomfort, I put it off. I was kind of naive. As a classic 21-year-old male, probably, I didn’t think much of it.
People will ask, “How long did you have that for?” Looking back, it’s hard to pinpoint it because I really don’t know. If I to say, probably around six months, I think. It was a while.
Why did you finally go to the doctor?
I called my dad to wish him a happy birthday. Then, on a completely unrelated side note I said, ‘Look, dad I’ve got this lump on my testicle. I’ve been putting it off for a while. What do you think?’
He said, ‘You should probably just go off to the doctor.’ I thought that sounded easy enough, and I probably should’ve done it before then.
Fortunately, being in the Army, we have pretty convenient healthcare. I went off to my Army doctor, and he pulled down my pants and had a feel around – which is a strange thing for a young guy, but he felt around and said it was probably a benign cyst.
He said, “We’ll send you off for any ultrasound anyway, and we’ll confirm what it is then.”
How did you get diagnosed?
Any time a young male has any sort of lumps or anything around the testicle, because testicular cancer is the most common cancer for young men aged 15 to 30, they do generally send you off for an ultrasound. That’s a way to see if that lump is actually something more serious than just a cyst because you can tell from the density of the ultrasound itself.
That’s when I went off for an ultrasound – that afternoon after seeing the doctor. They acted on it pretty quickly. Then, early the next morning, I got a call from my doctor saying, “Hey Hugo, I need to see you right away to talk about the results.”
For those who have been through a similar situation, you know when you get that call or hear that from the doctor, you generally think that something’s probably not right.
So, we went through the ultrasound results. He broke the news to me and said, “It looks like you’ve got testicular cancer.” That was the news I got with 48 hours first seeing him about the lump.
He was really good about it. He could tell I was shocked. Once again, being a fit and healthy 21-year-old, and having six months remaining before I graduated as an Army officer, he saw I was quite shocked.
He really laid down the facts and said hopefully we caught it early and told me testicular cancer was highly curable. He put all those positives right after the diagnosis, which I found quite comforting.
How did you react to your diagnosis?
Because I was so young and on top of that, in the Army, I thought I was invincible. When he said, ‘You’ve got testicular cancer,’ I put up a guard in a way.
I didn’t process it or think it was as serious as it probably was. I thought, ‘Okay, what does that mean?’ I was feeling positive about it probably because I didn’t realize the severity of it.
I’ve had no family history of cancer. I knew nothing about cancer. It was one of those things. I thought, “I’m young, so that should be a good thing. I’m sure it will be okay.”
It wasn’t until I broke it to my parents and told people that I kind of realized how serious it was. Saying, “I have cancer,” and hearing other people’s reactions made me realize this was more serious than I initially thought.
Eventually, we all go see Dr. Google. I probably shouldn’t have, but I went on google and started searching all these things about testicular cancer and realized I could be in for a bit of ride.
Can you describe what you remember of that first ultrasound?
She got my pants down and put the gel on, and she got the ultrasound. I was asking her a lot of questions. These people, they can’t actually give their opinion. Even if they knew it was probably cancer, they can’t actually say it legally.
She went over to the screen and there was a big black mass, and I said, ‘Is that a good thing or a bad thing?’ She didn’t say anything really, but I saw her face.
She was quiet, and I knew something was wrong. She said, ‘I can’t say. Your doctor will go over the results with you.’
I knew in that moment that it was probably pretty serious.
They called me the very next morning. They said they got the results back from the ultrasound and it was indeed testicular cancer. At least, it did look extremely likely that It was testicular cancer. The only way to 100% prove that it is testicular cancer is to have a surgery to remove the affected testicle.
Did you ever think of getting a second opinion?
It was pretty straightforward for me. I was naïve and young. Even if I had this same situation happen now, I probably still wouldn’t get a second opinion because it is a pretty clear-cut situation for someone with testicular cancer.
If you have a lump that tests positive for the markers of testicular cancer on the ultrasound, the only way to definitively confirm that is by having the surgery to remove the testicle.
To me, that was sort of it. It didn’t really matter if I got a second opinion because regardless, I’d be having that testicle removed.
That was a fairly easy decision for me. It was a strange decision as a young boy to because it’s never one you think you’ll be making. Either way, I was pretty confident. I had my faith and trust in the medical team.
How did you decide where to go for treatment?
At that point in time, I didn’t really have much of a say in that it all happened pretty quickly. They had referred me to the urologist that did the surgery, and that was just through the recommendation of my Army doctor.
Because testicular cancer can spread quite fast, they wanted to act quickly. As I found out, the surgery they did was not a complicated surgery. It’s not an invasive surgery. I just put the trust in the urologist that was recommended.
You decided to get a prosthetic testicle?
I did choose to get a prosthetic testicle, so he put in the implant to replace the cancerous one during the surgery. That was a funny discussion I had with the urologist.
As you can imagine, you’ve just been told you’ve got cancer, you’re a young 21-year-old, you’re about to go in for surgery, and all of the sudden, I found myself talking about whether or not I wanted a fake testicle and which one I wanted if so.
He literally got them out and had me choose which one I wanted. It was a strange moment, but as I’ve found through my journey, a bit of humor throughout some serious topics isn’t always a bad thing.
I eventually just told him to match it up with the other guy. To be honest, you wouldn’t even know it’s fake. It just sits there pretty normally.
I’m very fortunate with the healthcare I’ve been provided with the Army looking after me in terms of finances. I was very fortunate in that regard because I had the option available to me to get the prosthetic.
I was a single guy. I’ve got a lovely partner now, but at the time, I was single. It was a bit of a self-consciousness thing. Being the Army, having one testicle, it would obviously stand out a lot in showers after PT or that sort of thing.
Personally, I feel like I would’ve been pretty self-conscious knowing that I only had that one testicle down there. It was part of that masculinity component being taken from me.
If I was 30 years old, married with two kids, I probably wouldn’t have bothered. Because I was a young single male, I thought having some normality and symmetry down there was important. That’s the reasoning behind that.
Were you anxious before surgery?
At the time, I was definitely anxious because even though it’s straightforward hour-long procedure, it’s still is a surgery where you go under general anesthesia and get opened up.
For those who are about to go through that, it is a daunting process, but be reassured – you’re under anesthesia, and it’s a day surgery.
I was in and out in a day. For most people I’ve spoken to who have gone through a similar surgery, it is a lot better than everyone thinks. The initial anxiety is always going to happen, but the actual surgery isn’t that bad.
What do you remember about waking up from surgery?
I remember waking up and feeling pretty good. I was on painkillers. My dad was with me. He flew from one part of Australia to another where I was doing my Army training. It was a bit dislocated from the family, so he flew in for that. I woke up with him beside me which was great.
The doctor came in to see how it was going in recovery. There was a moment that’s funny now looking back at it. When he came to see how I was recovering, he wanted to have a look at the area.
There’s no feeling in the fake testicle, but he went to feel it, and I kind of jumped. He said, “Oh, did you feel that,” and I said, “No, but I should have.”
You’ve had these testicles your whole life, so to have someone come up and squeeze one and not feel anything, it was a bit strange. Apart from that, I really just sat there and recovered, and once I was ready, I was discharged later that afternoon.
Was surgery recovery painful?
I had the local anesthetic around the area, so I couldn’t feel where they had cut. How they do it is they don’t actually cut through the scrotum area itself. They make a small incision near your pelvic area and take the testicle up through that incision rather than going through the scrotum.
As far as recovery goes, you’re on standard pain relief. The job and training I was in was pretty demanding, so I had to put my training on hold for a month or so.
As far as my day-to-day work and walking around went, it was pretty good. A couple of days of being sore and tender, but I found that it was a pretty easy recovery.
You thought you were in remission after surgery. How did you find out you weren’t?
As far as time frame, I had a follow-up about a week later. I was scheduled in a couple weeks post-op for a follow-up CT scan.
My first CT scan showed that cancer had been contained, which was fantastic. There were no signs of cancer spreading. At that point, I thought of myself as one of the lucky ones. Life went on.
That was until the second follow-up CT scan. I had them every three months in the first year, then it goes to six months, and then yearly. The next scan I had showed that it had spread.
I was told that sometimes cancer doesn’t come up on a CT scan. It can be lying dormant, and it’s not until a later scan that shows visibly that the cancer is prevalent. For me, it was in my lymph nodes.
You almost wish the first would’ve showed that it spread so you could get on with it. You’re always putting your hopes up. My doctor said because it hadn’t spread at the first scan, he put me in the 95-percent bracket of probably not having it spread.
You hear all those facts and you’re really happy you won’t have to have any follow-up treatment. Then you have the next one and it shows it actually has spread. It’s like a punch in the gut you’re not expecting.
Chemotherapy & Side Effects
You had to start chemo after your testicle removal?
The doctor didn’t beat around the bush. He told me that since it had spread to my lymph nodes, I needed to have chemotherapy. There is an option where you can have lymph node resection surgery, RPLND for short.
They generally recommend that you have a dose of chemotherapy though because testicular cancer is highly responsive to it.
That was my next course of action – to commence chemotherapy, which was a cycle BEP. It was the chemo cocktail for testicular cancer.
Typically, anyone who is diagnosed with testicular cancer and needs chemo goes on the BEP regimen. Each cycle takes three weeks, and it’s three cycles, so it’s nine weeks.
However, after the first cycle, I had complications with the Bleomycin in my lungs. That’s not uncommon. Since I had those complications, they had to stop that particular chemo drug and continue with an extra two rounds of the EP.
Overall, I had five rounds in about four months. The majority of testicular cancer patients will have three rounds of BEP.
What did the regimen look like?
I was lucky enough to get to stay in the hospital for the week I was having the chemotherapy. I didn’t actually have to go in for a day and go home and feel bad. I could just stay five days with the nurses on hand to make me feel better.
For me, I went in for five days to the hospital. Each day was about eight hours of infusion, which includes all the actual chemo and the fluids. The next day, I did another eight hours and recovered, and I did that for the five days I was there.
Then I had two weeks off to give my body some rest and get everything in working order, and I’d go in go in do the same thing again.
Did you have a port?
If I had it to do over again, I’d get a port because it would’ve made everything easier. At the time, because I was young and had some pretty good-looking veins, I had the option of not having one. I thought I didn’t need one.
By the end of my treatment though, my veins had taken a beating. It got to the point where the nurses couldn’t find a vein to put the IV in because they kept collapsing. The oncologist actually had to come in and find different veins and put it in.
It’s something I regret as I look back on it. For those thinking about it, I’d definitely recommend that you have something like a port.
There are people who know a lot more about them than I do, but I know it can definitely make your life a whole lot more convenient.
Do you have any advice for anyone about to go through chemo?
The big one that I really want to educate people on is that chemotherapy is different for so many people and so many cancers.
People might see a movie and the typical cancer patient and think that might be what it’s going to be like for them. What you need to realize is that your cancer and your body handles things differently than other people.
Depending on how your body is, there’s a lot of different factors, but everyone will lose their hair for testicular cancer chemo. As far as the more noticeable side effects, fatigue is a big one.
A lot of chemo patients experience fatigue. The feeling of being nauseous is another one. I wasn’t physically sick during my chemo rounds because of the anti-nausea medicine I had, but you definitely feel nauseous. I lost a bit of weight from the loss of appetite.
Looking in the mirror, I was the typical chemo patient. I had the bald head, I was pale, fatigued, had dark circles under my eyes, and couldn’t hardly get out of bed.
That was me, and that’s a lot of testicular cancer patients. However, if you’re going through a different cancer and different chemo, it might be different.
When did you start to feel your side effects?
The first round itself wasn’t too bad. Recovering at home for the first week wasn’t very bad for me either. The last week before I was about to go back to the hospital was pretty bad. The more chemo I had, the harder it was. That’s just the build-up of it all.
You’re effectively poisoning your whole body. Chemotherapy doesn’t just target the cancer cells. It targets your healthy cells too. Hence why you get sick and get all these side effects.
That’s why I think the more chemo I had, the worse I felt because my body was having to really fight it every time. Every round after the first got worse. The week or the first few days before commencing the next round, I felt really terrible.
What helped you through them the most?
It’s easier said than done, but a positive mindset. I’m a big supporter of listening to your body. There are plenty of people who have gone through these journeys and their way of dealing with it is exercising.
What I say to that is that’s fantastic for them and that’s fantastic for a lot of people, but don’t compare yourself to that if you’re going through something similar because you might just be sitting on the couch watching a movie, and you don’t need to feel guilty about that.
Chemo reacts differently with everybody. Try to remain positive and do try to get up and moving every day. When I say moving, that could literally be getting up and going outside.
I tried to get fresh air every day. Every time I looked at the chemo, I looked at it as a good thing. I looked at it as something that was going to help me.
RPLND Surgery & Remission
How did you find out you’d need the lymph node removal surgery?
Just before the end of the last cycle, I had a CT scan to see if the chemo had done its job in my enlarged lymph nodes where the cancer had been. There were still some enlarged lymph nodes and some suspicious stuff going on.
Unfortunately, the chemo hadn’t done its job completely. They had to operate on that and remove the lymph nodes with RPLND surgery, which is a pretty invasive surgery.
I was still in the hospital for that. It was my last round, and I had a couple more days to go. I remember my oncologist actually said I should be fine, but then I had the scan. The next day, I got the results.
He came in and drew a diagram. He said unfortunately, I was going to have to have surgery to completely get rid of the cancer.
It was a bittersweet feeling. You’ve just embarked on a chemo journey, and although it’s predominantly done its job, you know you’re about to embark on a potentially even bigger journey with this invasive surgery.
It’s bittersweet because you finish chemo and start to feel better, but then you know that you’re preparing for surgery. You’re counting down the days, so it’s a pretty anxious time leading into surgery.
What were the preparations for the RPLND surgery?
When your body gets smashed with chemo, it wouldn’t be ideal to put it through an invasive surgery right away, so I needed some time to recover in between.
I had the RPLND surgery on the 14th of April, and I finished chemo 22nd of February. So, I guess that’s about six or seven weeks. They roughly go off of a two-month period or so in between.
I did a little bit of looking around at surgeons and found one in my hometown that felt right for me. I did the standard testing after chemo, and once they realized there was nothing stopping me from having surgery, they got to. I was once again under the knife, and that’s when they operated and removed all the abdominal lymph nodes.
What was the RPLND itself like?
It generally goes for about four hours. Mine went for about eight. There were a few complications here and there.
What they do is they cut from your chest bone down to your pelvic region. They make a big, 30cm incision down your stomach and clamp you open.
They remove all your intestines and organs and physically rest them on your chest in some tarp. They go down and access all your lymph nodes. Everyone’s different, but I had about 48 or so. They go in and cut out each one.
There’s always the possibility of complications from surgery. For this one, the chances are about 50-percent for several of them. My surgeon had only done one of these surgeries in the previous 18 months.
It’s not a very common procedure, so that definitely caused some anxiety. Luckily, I didn’t get any of those serious complications. My surgeon did a great job. However, I did spend a significant time recovering.
How was the recovery after the RPLND?
I had some complications that weren’t major, but they were serious enough to put me in the ICU for a few days.
What they do is they give you an epidural, which they inject directly into your spine, so it numbs the entire front of your body. Epidurals don’t work for everyone, and I fall into the small percentage of people who it doesn’t work for.
I had this 30cm incision down my front, and the epidural didn’t do anything. Once all the other anesthetic wore off, I was in the most excruciating pain. It was horrendous.
Eventually, they gave me a bunch of other pain medications to numb that pain, but it was a really difficult 48 hours of just being in significant pain. I’m a rare case, though, so be reassured. Go for an epidural.
Once I got through the initial first week of eating ice chips and those types of things, it wasn’t too bad. I saw progression.
Once you hit that mark, you start to really feel better. I spent a few weeks in the hospital after I left ICU because I had a few other things going on.
Then, it was very much gradually adjusting back to life. I was fortunate that the Army still paid me throughout the whole journey, so there was no rush. I was back in half days and sedimentary duties before going back in full force.
How did you find out you were in remission?
Once I recovered, I had a post-op CT scan, and that determined what my situation was. He removed all my abdominal lymph nodes, so I didn’t have to worry about cancer there. They got everything out in surgery, so at that point I was back in remission.
What were your follow-up scans like after that?
They check your blood every three months. There’s also CT scans and chest x-rays every six months. That’s the general surveillance you go on for the couple of years. Then the blood work can extend to once every six months. The scans can go to once a year with an x-ray still every six months.
I definitely had a little bit of that scanxiety going into every scan. It goes back to that first scan being clear and the second showing the cancer was in my lymph nodes. Part of me thought that just because one was clear, it didn’t necessarily mean the next one would be.
The odds are well in your favor. That being said, because I’d already had a clear scan and then one that came up positive, those odds got thrown out the window.
There are always people who go against odds, and I counted myself as one of them. I felt like I was the 5% and not the 95% if that makes sense.
Quality of Life
Can you describe the hair loss and how you dealt with it?
I was made well aware that my hair would fall out, so rather than holding onto my hair, I thought I’d just shave it from the outset. I knew it would, so I didn’t see the sense in waiting around for it. Why not embrace it and get it over?
During my first round, before it even actually started falling out, I got my twin brother to just shave it off. That way I felt like I was prepared for it instead of dealing with the clumps.
I’m in the Army. I’ve always had short hair during training especially. For me, it wasn’t that big of a shock. Was I still self-conscious? Yeah.
There was a powerful moment where I hadn’t actually gone out much. My hair was shaved, my eyebrows had mostly fallen out. I looked like that typical chemo patient. I was pretty insecure, and I didn’t go out much. I had this moment where I had a family friend lose his life, and there was a funeral. I wanted to attend the funeral, and I didn’t know if I was going to.
Then I thought, “What am I doing? Here’s someone who has just lost their life, and I’m complaining about a bald head because I’m self-conscious.” I snapped out of it and realized, “Who cares?”
I can’t help going through chemo, I can’t help going through cancer, so put on my blazer, and it was the first time going out with my bald head. There were hundreds of people there, and yes people were looking at me. I just embraced it.
I spoke to a few people at the wake afterwards, and this one guy in particular. He knew I was in the Army, but he didn’t actually know I was going through chemo. He said, “I thought you had a bald head because that’s the look you were going for because of the Army.”
It just goes to show that quite often you put these perceptions of what people are going to think of you out there more than they actually think them.
Do you have any advice for someone who’s worried about hair loss?
If you’re worried about it, it’s understandable. I can’t imagine what it’s like for women. If you want to get a wig and that makes you feel better, go for it. Looking back on it now, yes, I was insecure as a 22-year-old.
However, if I went through what I went through now, knowing what I’ve gone through and knowing these amazing survivors I’ve met through my journey, I’d say embrace it. Be a proud survivor.
You don’t know who you’re going to help by doing that. You don’t know how many people you’re going to inspire with your bravery.
Was there talk about fertility preservation
I froze some sperm before my chemotherapy. Even though it was only one testicle, and the remaining one would work just as fine as two, I was told that chemotherapy could affect fertility. It was strongly recommended that I put some sperm away, and I’m glad I did.
Kids weren’t really on my radar. Had I been actively thinking about having children, I think it would’ve been a lot harder because the RPLND surgery can cause retrograde ejaculation which means you’re infertile. Luckily, I didn’t have that complication, but I do have some frozen sperm there if I needed it in a worst-case scenario.
I did have a follow-up fertility test, and it showed that I still have an above-average sperm count. I at least know I can conceive naturally, but I have that back up just in case. I would strongly encourage all the men out there who are going through testicular cancer to freeze some sperm.
Even if you’re young and you don’t think about children now, I can guarantee it’ll be something you’ll regret if you don’t have frozen sperm.