Testicular Cancer Survivor Joe Utecht Uses His Experience to Help Advance Genetic Testing and Awareness
Welcome to the Band of Ballers! In this series on ABSOT, I’m turning over control to some other ballsy testicular cancer survivors and patients who have inspired me with their work in advocacy and awareness during and after their diagnosis. This month’s feature is all about Joe Utecht, who helps to improve access to genetic testing. Enjoy!
I popped out of the shower and as I toweled off, I felt my right testicle. For the second time that month, I felt a hard lump the size of about two peas. I was astonished that it was still there, but I told myself that it was nothing to worry about and it would likely go away. Besides, life was busy with a crazy work schedule that had me flying all over the Southwest, and an active social life that had me out late each weekend night.
A few weeks later, my active work and social life was coming back to haunt me. I was feeling run down, feverish, and not sleeping well. Despite all of that, I was not going to miss Halloween night in Scottsdale.
Besides, I’m 29 years old and invincible; I’ll sleep when I’m dead.
That Halloween was epic! I had dressed up as Michael Phelps, swim cap, speedo, American flag cape, the whole nine yards. I met a ton of people and had a blast. But the next morning my body hated me. I had the worst fever I’ve ever had. I was incredibly fatigued, despite the fact that I hadn’t drank that much, and I developed multiple fever blisters.
On Sunday, I rested but it did little to ease my sickness. I tried to work the next day, but I was in bad shape and for the first time in my life, I scheduled an appointment at a Primary Care doctor. I was there because of the blisters and fever, which turned out to have nothing to do with my eventual diagnosis, but when the doctor had one foot out of the door, I asked him to come back and feel the lump on my testicle. It wasn’t easy for the doctor to find, and he almost dismissed it altogether, but finally he located it, and set me up for an ultrasound later that week.
During the ultrasound, the tech again had a hard time finding the lump, which at this point was the size of three to four peas. What made it worse was that I had a varicose seal (that isn’t uncommon – 15% of men have them), but it meant more room for error with the ultrasound tech.
Either way, the tech found it and I went on with my workday.
At the time, I was dating a gal long distance, and she was coming to see me that weekend. My plan was to pick her up from the airport at 5:00 PM, but then at 4:40, my phone rang and my life changed forever. On the other line was the nurse from my new Primary Care doctors. She asked me to come down to the office immediately, and it was tough to ignore the urgency in her voice.
I quickly realized it was bad news, and being the stubborn bastard I am, I told her I had big plans that weekend, and had no time to come down, so please just tell me what the diagnosis is. After a few minutes of arguing, the doctor jumped on the phone and said I had testicular cancer, and I need to come down so they can refer me to a urologist for surgery.
I don’t even know how I responded, but I think I either hung up or I blew them off. All I knew for certain was that my life was going to change for the worst, I needed a few minutes to think, and I had to pick up my girlfriend from the airport in 5 minutes. As soon as I hung up I looked at my phone. Do I call my parents? My brother? Do I tell my girlfriend? Will I be able to have sex again? Am I going to die?
It may seem crazy, but in that 5 minutes, I came up with a plan.
I decided not to tell anybody about it. I’m going to enjoy one last weekend of being normal, before I succumb to the fact that I had cancer. No tears, no emotional freak outs, no long calls to family, just a 29-year-old dude who wanted to soak up one last weekend of debauchery in old town Scottsdale. So that’s what I did, I picked up my girlfriend, and did my best to bury the stress. We hiked, we ate, we drank, and I did the best to ignore the mental stress and the throbbing in my right testicle.
To add insult to injury, I tried delaying confronting the problem the next week as well. Monday I had a business trip to California, and during work breaks I called around to urologists to get an appointment the following week. After getting the runaround at a few places, a scheduler finally connected me with a nurse by the name of Crystal, who had me call my doctor and send my ultrasounds to her.
An hour later, Crystal called me, shut down my nonchalant attitude, demanded that I get to her office in Arizona, and to be prepared for surgery immediately to prevent the cancer from spreading.
I was dumbfounded but it took her aggressiveness to get my attention.
Here I was working like an idiot, when I had an active cancer potentially spreading throughout my body. My sales rep, Art, became the first person I told, and he turned the car around to take me to the airport.
I got home Tuesday afternoon and my urologist appointment was the next morning. So I drove to my parents’ house and told them that I have cancer, and that I’m going to need surgery to remove the testicle. They were shocked, confused by the drastic surgery, and hesitant to let me go through it. But after a few hours of phone calls and a whole lot of medical Googling, they now understood that was standard procedure for testicular surgery and that I could still live a normal life.
The next few days were filled with CT scans, doctor visits, and stress. I liked my doctor, Robert Shapiro, a lot and the good news was that a scan showed that my cancer hasn’t spread. So, a quick surgery, another CT scan 3 months later, and I’d be the same old Joe… minus one nut.
The surgery turned out to be a breeze and my only disappointment was that I wasn’t able to keep the diseased testicular.
It sounds sick, but I thought it would be funny to keep it in a jar. After all, it was my ball, and I’d like to keep it.
Three months later, my girlfriend was back in town, I’d taken that Friday off, and we had a ton of plans. Little did I know, my world was about to get turned upside down again. It was only supposed to be a two minute appointment where the doctor would look at my scans and tell me that I was all clear, so I brought her.
As we drove to the appointment my sandal got stuck on the gas pedal and I almost wrecked and killed us both. At the last second I was able to free my foot and jam on the brakes but I was really shaken up about the ordeal and was still trembling as I walked into the doctor’s office. When the doc came in, we chatted for a few minutes until he pulled up the images.
For the second time in my life, I received earth shattering news.
The cancer has spread microscopically before the surgery. 6 lymph nodes had swelled to the size of golf balls and were likely causing the back pain I was feeling while trying to sleep recently. Both the doctor and I were stunned. He couldn’t believe I’d come back for the scan, because he said that no one ever does. But he was also stunned the cancer had spread so quickly.
That weekend was a blur, this time I told my girl but no one else. I wanted to give my family, one last weekend of bliss before we started round two of the cancer battle The next week consisted of appointments with the great radiologist Michael Gordon, trying to keep my parents from having heart attacks, and planning for the dreaded chemotherapy which at that time, I knew very little about.
My assumptions were that I was either going to die or be a sickly skeleton from barfing and nausea. It sounds horribly vain, but I was more scared of the second option. I was a very skinny kid growing up and I spent a lot of time in the gym to put on muscle and I wasn’t happy with the fact that I was probably going to lose all of my physical gains, and possibly my life.
As I talked with my doctors I started to realize that chemo would be difficult, but I still had a 90%+ chance of survival.
So, despite the fact that cancer had spread, the chemotherapy regimen I’d be on was very effective. I was in great shape. I was young with no family to worry about, and I had great insurance. For the first time in my life, I became an optimist because I was in the best possible position to survive cancer, and I had a very curable cancer.
A few years prior, my grandfather had died on his first day of chemo for cancer. Knowing this, my paranoid mother demanded that my 1st week of chemo be administered at the hospital. So there I was on day one, sitting on my hospital bed, having my head shaved by my step dad. I decided I didn’t want to wait for chemo to slowly make my hair fall out. Fuck that. I grabbed the bull by the horns and buzzed it down to the scalp.
Although my work told me to take as much time as I wanted, I kept busy working on spreadsheets, answering emails, talking with my sales team, and the like.
I didn’t do it out of paranoia for my job. I did it because I wanted to keep my mind off the fact that chemo (essentially poison) was creeping through my bloodstream via a port that had been surgically implanted in my chest. My strategy worked. After 8-10 hours, my chemo bags were empty, and I’d barely noticed a thing.
Plus, it was March Madness, and college hoops, work, and visits from the greatest friends a guy could ask for, helped the week go by fairly quickly. I’d even kept up a regimen of pushups and sit-ups in the hospital, and one of the nurses had dragged out a stair stepper so I could do a horseshit workout every day. My goal was to avoid disrupting my fitness and work routine as much as possible.
A week later, my first part of the cycle was done, and I talked my way out of the hospital.
I’d have 1 hour of chemo the next two Mondays, and then the next cycle of chemo would begin. 5 days straight of chemo all day, then 2 weeks of 1 hours of chemo on a Monday and repeat that 3 times total. Better yet, I could complete the rest of the treatment at the doctor’s clinic, and go home every night which was amazing. As great as the nurses and the hospital was, it definitely depressed me to be there. I didn’t tell others that. In fact, I was always walking the halls and joking and talking with patients, nurses, and visitors, but it was hard to be away from the comforts of home.
During the weekend before I started my second cycle, I had trouble sleeping and went into the bathroom at my girlfriend’s place. As I scrubbed my face with cold water, I realized that my buzzed hair was falling out in large patches. I knew it was coming sooner or later, but I still wasn’t pumped about officially looking like a cancer patient.
During the first cycle, I’d only asked for nausea medicine once.
I was nervous about the cost of the hospital stay and I guess my thought process was to resist spending any more money on treatment then I had to. That turned out to be a mistake during the second cycle, because after 5-6 rounds of projectile vomiting in one day, I would take anything to alleviate the nausea.
By the end of that week, my appetite had diminished greatly. I felt like I was severely hung over most days and that someone was standing on my stomach. At that point, I would do anything to feel better, and even smoked weed a few times which helped a great deal compared to the anti-nausea medicine. From that point forward, I was a fierce advocate for medical marijuana and was very appreciative of how effective it was at helping with nausea, returning my appetite, and relieving anxiety about treatment.
During my 3rd and last cycle, I felt like I’d run into a brick wall from the side effects from chemo. On day 1, I vomited the entire day during treatment. The same thing on day 2. The nurses were giving me everything in the arsenal to help, and finally just gave me some meds to knock me out. Even after that, I would wake up, barf in a bucket, then immediately pass out again.
Those were by far the worst days of my life and everyone was worried that I wouldn’t be able to finish treatment.
On day 3, I made an adjustment. I took nausea meds and smoked weed before treatment. This worked like a charm! I had no vomiting those last 3 days and then coasted through the next 2 weeks of the light cycle!!
I’d just made it through the toughest challenge of my life, and it gave me so much to be thankful for. My family was fantastic. My parents and brother took turns driving me to treatment, keeping their eye on me, and the sandwiches my dad made for me to avoid the hospital food were lifesavers. Plus, my Arizona friends, many whom I’d only met recently, did a great job of rotating in and out of the hospital to cheer me up, bring food, etc.
I was blown away by the support I received and it instilled a belief in humanity that changed the trajectory of my life.
Prior, I was fairly cynical, a glass half empty type of guy who didn’t trust people. Now, I realized there were a lot of great people out there and to take great pains to find them and help them when they’re going through their own battles.
I’ve been involved in healthcare since 2007 doing sales, marketing, and management for pharmaceutical and surgical companies. I made a good living and had good products that helped people but to be honest, I was only making a marginal impact on patients’ lives and I wanted to make a bigger difference.
Then I got the opportunity.
A company by the name of Ambry Genetics had a position open in their oncology division. The more I researched about the position, the more excited I got. For those of you who don’t know, labs like Ambry can analyze your DNA (saliva or blood) and within 2 weeks they can see if you have a genetic mutation that may lead to an aggressive cancer.
This process used to be complicated and expensive, but now it’s well covered by insurance and very straightforward for providers to order. The problem is, a lot of providers don’t understand how easy it is, or how it can save patients’ lives through early detection, cancer prevention and precision treatment. Studies show that for the 97% of patients who are at risk for genetic cancer never get tested and in the state of Arizona, it became my job to change that.
Every day of the week I talked with doctors, nurses and medical office managers about genetic testing and how important going through a patient’s family history of cancer was, and how it can qualify a patient for genetic testing which can save lives and decrease the high physical and financial cost of a late stage cancer diagnosis. Whenever these providers balked at the need to test, I told them my story, about how I delayed getting a health checkup and had to go through a horrible chemo experience instead of just a surgery.
I think my story puts things in perspective for a lot of providers and I’m proud of the fact of how much genetic testing has grown in Arizona.
That being said, providers and medical staff are busy, and patients often don’t spend enough time giving an accurate family history, so high percentages of patients are still being missed. So my company figured out a way to standardize and automate the risk assessment, genetic testing, and even the follow up process, so that all of the providers involved in a patient can adjust their clinical management to save lives. Better yet, I got promoted a year ago and my job is now to go around the country selling our technology to hospital systems, imaging centers and provider clinics so that we can identify, test, and manage these high risk patients, without slowing down the workflow of a provider.
Basically, it’s a cancer survivor’s dream to take the fight to cancer and help save lives. With our technology, we no longer have to be reactive to cancer and wait for a diagnosis, which often comes in a late stage. Now we can be proactive, and take the fight to cancer’s doorstep, before it even has a chance to grow and spread. Better yet, our risk assessment technology is nearly free, and our genetic testing is almost always covered by insurance and we even have a low cash price. So the fact that I can provide equity of care and help so many people without costing them an arm and a leg, is an unbelievable feeling and I’m thankful everyday that I get a chance to fight the good fight for all those folks who didn’t make it before me.
In closing, getting cancer was the best thing that ever happened to me.
It gave me empathy, it made me appreciate people, it made me realize how tough life can be and that it’s best to not go at it alone because we all need support. It made me realize that hard work is great, but you’ve got to stop and smell the roses and appreciate everything you’ve been given, because in an instance, your life can be turned upside down. Lastly, it made me appreciate health, because health is everything.
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A self exam is how most cases of testicular cancer are detected early. Click the image for video directions or click here for a larger version
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