What I Wish I’d Known About Testicular Cancer and BEP Chemo
On April 26, 2021, I finished my seventh and final treatment of BEP chemotherapy. That concluded a whirlwind two months during which I was diagnosed with testicular cancer, underwent an orchiectomy and completed one full round of treatment.
Before, during and after the chemo, I heard from people just beginning the same process I was progressing through or from people who just finished the same process ahead of me (and from many others who offered encouragement). I swapped stories with those in a similar situation now or previously and the conclusion we always came to was that — because it is such a rare disease — there’s not a handy-dandy guide on how to go through this process. And the amount of information out there from firsthand experiences varies significantly, too. (Some people have surgery then do surveillance; others have surgery and do three rounds of BEP or another treatment like carboplatin. Each case is unique and for every 100 cases, there’s maybe one or two detailed firsthand experiences I’ve read.)
So I’m sharing my story about what I wish I’d known before going through the process — from diagnosis to post-chemo — in hopes that it might help someone else in my shoes who could not find much information on the disease in the same way I could not. I will provide as much detail as possible without providing too much detail. To state the obvious: I am not a doctor. I’m just a uni-baller with a keyboard.
As always, my advice to the gents out there: Check yoself. Do it monthly. Get a physical exam annually from your doc. And if your doc doesn’t examine your balls, ask he/she how to properly do so. Here’s a link with a three-step process that walks you through that.
What led me to seek out medical treatment
I had a swollen left testicle that became sore to the touch. Upon a self-examination, I found a lump and went to the emergency room. I was diagnosed and had surgery to remove the testicle within 24 hours. (If you have a lump, do not wait for an appointment with your primary doctor; I was told they are not equipped to do an ultrasound to check for cancer in the same way an ER is.)
My diagnosis
Single mass on left testicle that measured 5x4x3 cm. Pathology report showed 90% yolk sac and 10% seminoma. No teratoma. It was positive for lymphovascular invasion, making me stage 1B. Immediate analysis from CT scan was inconclusive regarding metastasis to lymph nodes or lungs.
After surgery
It takes approximately four weeks for AFP tumor markers to stabilize after my orchiectomy. So there’s a gap between starting on any treatment plan after surgery for this reason.
During the gap
This is the last thing on your mind — truly — but sperm banking is important if you want to have kids in the future. It wasn’t until weeks later that I found out I’d be doing chemo (more on that in a second), but in the event you do chemo, the likelihood of infertility is increased. And by the time you choose to do chemo, in some cases, the chances you can sperm bank enough between that decision and the start of chemo are slim. So do it early.
Why I went with one round of BEP chemo
My AFP tumor marker was slightly elevated three-and-a-half weeks after surgery (but in a normal range according to the scale Indiana University Health, who I used as a second opinion, uses). My scans did not show anything suspicious in the lymph node areas after seeking opinions from Indiana and from my oncologist, but I was positive for lymphovascular invasion. I was given the option to do one round BEP or go with surveillance. Ultimately, the one round of BEP reduces recurrence by more than 90%, my oncologist said. So we decided to go that route as opposed to strict surveillance.
RPLND surgery was off the table for me personally. At least for now. This is a popular surgery that you can undergo after your orchiectomy, typically done at a Centers for Excellence and sometimes done robotically. It was given as an option for me, with the goal being to remove lymph nodes and be proactive in the event the cancer had spread there. This was the option my wife initially found appealing. However, after the orchiectomy and the recovery, I wanted to avoid another surgery and I know the RPLND — while a viable option for many — would be a huge challenge for me and not necessarily the best option. My oncologist did not recommend it, though some might dependent upon how scans look.
My BEP chemo schedule
Day 1: Bleomycin, etoposide, cisplatin
Days 2–5: Etoposide, cisplatin
Days 6–7: Weekend rest
Day 8: Bleomycin
Days 9–14: Rest
Day 15: Bleomycin
Thoughts on chemo schedule
My face looked like a pufferfish by day five because of the dexamethasone steroid given with the chemo treatments. I did not expect this. I was given Benadryl and Tylenol on days 1, 8 and 15 to reduce the likelihood of an adverse reaction to the chemo — and specifically to bleomycin. On most days I was also given hydration and fluids.
What I experienced
Fatigue. Lots of fatigue. Treatments the first week spanned hours. By the time I got home, I slept sometimes three to four hours and also slept through the night. The steroid does affect people differently, and others I’ve spoken with have trouble sleeping, but I slept hard overall, likely because I took my nausea meds regularly and took Ativan — an anti-anxiety drug that reduces nausea — strategically before bed.
The second week (day 8) was far and away my worst. I did not eat before treatment, the room prior to my infusion was hot, making me nauseous. And I was sick before treatment. I vomited most of that day and ran a fever. I did not have Tylenol in my IV that day and did not take Tylenol until my fever spiked multiple hours as I waited word from doctor. In hindsight, I’d have taken the Tylenol earlier and ate beforehand. The following week I followed my own advice. (I let the facility know that the sauna room prior to treatment needed to be fixed; I’ve been told they are adding shades in the area. Apparently a facility located in a state that regularly gets in the 100s during the summer needed this reminder!)
I felt pretty bad the entire first two weeks. After the final treatment, I began feeling better about five days afterwards. This is also when all my hair fell out. ALL. MY. HAIR. I gotta say, living without armpit hair is truly a freeing experience. The hair on my head was falling out by the clump so after a few days of shedding, I cut bait and took the razor to that.
Side effects I experienced
Walking any distance was a challenge from the day I began treatment to about a week after the final treatment. I was out of breath walking around the block and my legs felt like silly putty. This got better as I built up my endurance and slowly crescendoed to running again.
Losing the hair was another side effect (I kept my eyebrows, though they’ve thinned enough to the point that I look like I’m trying something exotic with them.) I lost my hair roughly two weeks after the first treatment. This is roughly around the same time my doctor told me my immune system would begin making a rebound.
Tinnitus (ringing in the ears) was the worst side effect, though it eventually dissipated. It came on strong the second week of treatment and gradually became less frequent a month after the final infusion.
What I would have done differently
For testicular cancer, there is one place universally regarded as the best: Indiana University School of Medicine. It took me weeks to learn this after getting opinions from survivors. Dr. Lawrence Einhorn is the best in the world at treating TC and he’s developed a number of innovative treatments that make TC a survivable cancer in many cases. He treated Lance Armstrong when Armstrong’s testicular cancer had metastasized.
I connected with Dr. Einhorn while he was on vacation and was fortunate enough to be referred by him to Dr. Nasser Hanna at IU. He reviewed my scans and bloodwork as a second opinion and worked hand in hand with my oncologist in Tulsa to provide me with the best treatment options. My only regret is that I did not seek him out sooner. Even if it’s just for peace of mind, getting a second opinion is something I highly recommend because TC is so rare.
Trying to work during chemo
The first week of BEP chemo, I was told — thankfully — to take off work and wait to see how I would react. I’m grateful for that guidance from my boss, and to my team at CBS for having my back through that week (and through the last few months).
When I was in the chair for hours getting treatment, my body felt like jello and my brain like mush. When I was at home after those treatments, I was asleep or counting down the time until I could sleep. The first week zapped me completely. Some could work during this, but it was all I could do to read a few pages of my Stephen King book.
The second week was a continuation of that and for me — after struggling through my bleo treatment on day 8 — I had a hard time for several days. I worked some that week, but I don’t think anything I did was particularly great. (That’s probably because nothing I did felt great.) By the final week I was slowly rounding back to being capable of working without fear of making catastrophic errors amidst the brain fog.
If you’re able, my recommendation is to take the first week off and go from there, because the time in treatment alone is all-consuming. But getting to the finish line of that course is freeing as hell. I have check-up bloodwork later in June and follow-up scans later this year to see how I responded. I hope to never have chemo in my body again.
When I started feeling normal
Three days after my final treatment, I ran one mile. Then the next day, another mile. Next day, another mile. I repeated this until I was up to two miles two weeks later. Somewhere in between there was when I started regaining stamina and passing turtles (who previously were racing ahead of me) on these training sessions. About three weeks after the final treatment I felt close to my normal self. Although my stamina from a running perspective still isn’t what it was pre-chemo, I no longer get out of breath trying to perform simple tasks. This is amazing overall, but also means I once again have to do the dishes and laundry on occasion. I’ll take the trade-off.
Anxiety and cancer
I have days where anxiety comes in waves and others where it doesn’t. Having gone through a year with COVID and two months where I was compromised during and after treatment, I find it to be a daily struggle. There is a Facebook support group with TC survivors and others going through it that I’ve found helpful. I’ve made friends with many there going through the same experience and it’s reassuring. I’ve also leaned on family during this time. There is no one-size-fits-all cure for anxiety, and others experience it with or without cancer and going through chemo.
I can only speak from my own personal experience. One of the biggest helps has been hanging outdoors and just generally being outside. Mowing the grass, trimming bushes have helped. I also run several miles a day to make sure I’m getting exercise as well. Finally, I actively try to disconnect from my phone when possible. Making an effort to unplug and be outdoors has helped me immensely.
Being a friend to someone going through this
After the initial diagnosis, I got a flood of support from family and from friends — and I found it to be a tease. My family was the only ones I could rely on. Some friends I heard from shortly after the diagnosis I still haven’t heard from. This tweet in particular hit me in the feels.
I haven’t had a close friend my age go through something like this, so it’s hard to give advice on how to be a friend. My advice, simply, is to be there. There’s a handful of close pals who have done this, and it has meant the world.
Send a text to let them know you’re thinking or praying for them. Offer to buy a meal for their family. Help them set up a GoFundMe for medical or travel expenses, which are plentiful. Cancer is a lonely disease and not hearing from close friends during the fight is painful. Any help you can offer is a moral boost to them and a huge blessing to their family. So make an effort. Even if you’re unsure about what to say or do, simply doing is often enough. For me it was. There are voicemails I’ve saved and thoughtful texts that came in that changed my outlook in times when I felt low. There were dozens of people who bought shirts to help with our bills, and many sent money to my wife through Venmo that blessed us immensely. The support from that was overwhelming and emotional. Some people I’d never even met helped us out. There are things I’ll never forget, chief among them are the friends and family that were there for us. I hope and pray it has given me a new perspective to be a better friend and family member when others go through hard times.
I am always happy to talk and share my own experience or talk with you if you are going through a fight with cancer or know someone who is. My email is kyle.boone@cbsinteractive.com.