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 Scott Petinga, who has founded various companies and organizations that do a ton of work with testicular cancer and men’s health awareness, including CACTI, the organization behind this study about men’s perceptions on testicular cancer. Enjoy!
Fourteen years ago, during an intimate moment, my wife discovered a lump in my testicle. Somehow, without me ever noticing, my left testicle had grown to be twice the size of the right. The mood immediately turned sour, and we frantically spent the next few hours searching the internet looking for answers. It was reminiscent of jumping down the rabbit hole featured in the book Alice’s Adventures in Wonderland, a desperate excursion leading us to the question we both had: Was it testicular cancer?
Testicular cancer was not in my plans
Up until that point, I lived as if I was invincible, a guy who had life by the balls. Several times in my life, I had escaped death and overcome physical and emotional pain that I would never have imagined. I was a survivor of both an ill-fated car accident and Marine Corps boot camp. But cancer? Could I tackle a monumental confrontation such as this?
I had multiple exams, a CT scan, X-rays, two ultrasounds, and the findings weren’t exactly as I suspected. Even though my left testicle was swollen, my right testicle was actually the cancerous one. With most guys, testicular cancer presents as a growth or a mass, but for some reason, in my situation, my right testicle was dissolving.
Shortly after my diagnosis,I started close to a dozen rounds of radiation across my entire abdomen. I immediately became extremely fatigued; my appetite became almost non-existent, I was nauseated, and would vomit often. In a couple of weeks, the rapid weight loss took me from being a healthy 160-pound, 31-year-old male to a sickly 120-pound skeletal version of myself. My body could no longer regulate its temperature, and I had to resort to wearing heavy wool socks throughout the day and even to bed. I became unrecognizable when I looked at my reflection in the mirror — no longer feeling attractive, my confidence plummeted.
The aftermath of testicular cancer treatment
While I was eventually deemed ’cancer free,’ the treatment changed me forever. I lost more than my testicle that day. It turns out I became infertile, my testosterone vanished, and my brain functionality diminished. I’m still experiencing muscle atrophy from the radiation therapy that was administered to me in order to save my life.
Due to the hormone deficiency, I have to travel to USC in Los Angeles every ten weeks to have pharmaceutical testosterone implanted into my body. While the pain is oftentimes unbearable, I fight through it because forever etched into my memory is a picture I saw as a child. It was a big-ass crane trying to swallow a frog that had a death grip on the crane’s neck. The caption read: NEVER EVER GIVE UP.
Even though on several occasions throughout the years my brain wanted to admit defeat, my heart and soul refused to settle for anything less of victory. This is what drove me to move forward — to reach new heights.
What I do to raise testicular cancer awareness
The silver lining of all this came out in 2013. I decided someone needed to pick up the baton that Lance Armstrong dropped if we truly wanted change the reality of testicular cancer. So I personally made a $500,000 donation to USC Norris to help the medical community finally start making better decisions — decisions driven by data so that others who walk in my footsteps face less of a burden when it comes to fighting testicular cancer.
In the spirit of making a bigger influence, in mid-2015, I also founded an international advocacy network whose mission is to advance the practice, research and education in the field of testes cancer: Center for Advocacy for Cancer of the Testes International — CACTI. With the formation of CACTI, my hope is that every new testicular cancer patient will have access to qualified healthcare personnel who can make a quick and accurate diagnosis and offer better treatment options, thereby minimizing the severity of their treatment and reducing any long-term side effects, which will ultimately allow them to live better lives.
While I’m absolutely making an impact, I needed substantially more funding to continue to save myself and others. I realized I couldn’t wait and hope that some for-profit Big Pharma company or an academic research facility with very little money would conduct research that would make an impact. It was at that very moment that I came up with the idea of creating products where the majority of the proceeds would go to advance the practice, research and education of health initiatives for men. In 2018, Rouse Condoms and Pariah Underwear were launched. Over 50% of the proceeds from both brands are donated to men’s health initiatives plus every package comes with a testicular self-exam flyer.
This encourages men to take ownership of their health with a disease that’s too infrequently discussed.
Know someone (or even yourself!) who is supporting TC awareness and would be willing to share their story? Drop their name, contact, and why they should be featured into this Google Form and I’ll reach out to them and/or you!
This post originally appeared on A Ballsy Sense of Tumor. It is republished with permission.