Tuesday, July 10, 2018

BOB05: Scott Petinga - CACTI/Rouse/Pariah

Scott Petinga has Formed Not One, But Three Different Organizations that Support Men's Health and Testicular Cancer

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 Corp boot camp. But cancer? Could I tackle a monumental confrontation such as this?

The man behind these missions
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 picture he saw
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.

Be sure to connect with Scott by visiting him at his website, on Twitter, or on Facebook. Until next time, Carpe Scrotiem!

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!

Editor’s Note: Parts of Scott’s story were sourced from this Playboy interview and this Esquire interview.

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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Thursday, July 5, 2018

PCL34: A Research Study By CACTI

The Center for Advocacy for Cancer of the Testes International Recently Did a Study on Men and Their Views on Testicular Cancer and Testicular Exams - Here's My Reaction. 

As a testicular cancer survivor, I’m always on the search for fellow Uniballers - both to share ideas about how to spread the word about testicular cancer and to complete my missing half (Kyle Smith of Check15 and June’s Band of Ballers feature is the Lefty to my Righty). A few months ago, while browsing Instagram, I happened upon Scott Petinga, a fellow testicular cancer survivor, who was promoting Pariah, a new pair of underwear that benefited cancer research and awareness efforts. While researching further, I saw that he had also founded the Center for Advocacy for Cancer of the Testes International (aka CACTI). As a bonus round, he will be this month's Band of Ballers feature - stay tuned.

Around the same time, I was beginning my research study about men’s experiences with testicular exams at the doctor’s office and discovered that CACTI had run a survey of 1,000 men in March 2018 about their knowledge of testicular cancer. You can read their full breakdown here, and this is my reaction to their study. I've included CACTI's findings in bullet points and my own reflection after.

What do men know about testicular self-exams?

  • Nearly half of those surveyed do not perform testicular self-exams.
  • More than 1 in 3 of all men polled have never been told about the importance of a monthly testicular self- exam.
  • More than 60% of those surveyed say they would perform a monthly testicular self-exam if someone told them it could save their life.
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Honestly, none of this surprised me. I know most of my own personal friends never did (and some probably still don’t) self-exams prior to my diagnosis and that I was in the minority as a man who actually did it regularly. My findings from my study regarding doctors talking to patients about self-exams show the percentage is even higher and the Testicular Cancer Society similarly found that 62% of their respondents said that no one had ever discussed self-exams with them. No matter which survey you look at, the findings are clear: all men need to be told about the importance of testicular self-exams.

But it’s not all bad news. That last line gives me hope. With any luck, these thousand men they interviewed have now been nudged enough to do a simple life-saving self exam monthly. My biggest question about that stat is, “Why were only 60% convinced?” If someone tells me I can do something to potentially save my life, I’d be all in.

What we can do to change this?

I cannot say it enough - teach the men in your life how to do self-exams, remind them to repeat it monthly, and reinforce the importance of this 2-minute act. If you’re uncomfortable talking about it yourself, feel free to send them ABSOT’s page on self-exams here.

What do men know about testicular cancer causes and detection?

  • Close to 50% of men polled believe testicular cancer is detected during an annual physical exam.
  • 40% of men surveyed believe they can get testicular cancer from things like wearing tight underwear, taking a spin class, or having too much sex.
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The first stat reminds me of a common excuse I first wrote about in No Time for Excuses:I don’t need to do a self-exam every month because a doctor will catch it during my annual exam. Simply put, if I waited the nine months from when I discovered my lump in October until my annual exam in July, who knows if I would be writing this post right now? Additionally, both the Cleveland Clinic and my study have found that many men don’t even attend an annual physical exam.

I think we have Lance Armstrong to “thank” for the thoughts of biking resulting in testicular cancer. While cycling doesn’t cause testicular cancer, it won’t improve your biking ability. I’m not entirely sure where the second two notions stemmed from, but I will say that my urologist actually told me to wear tighter underwear after my orchiectomy.

In addition to those three different “causes” of testicular cancer, I’ve also heard guys thinking that getting hit or kicked in the balls results. This isn’t true, as it’s more of a correlation (striking the scrotum will make you feel yourself) than a causation. Either way, it’s interesting to know that there are so many guys out there who believe false information about their testicular health.

What we can do to change this?

It’s easy - hear something untrue, call it out. Come at it from a place of education and empowering men, and keep it brief. No one needs a lecture.

What do men know about testicular cancer risk and fatality rate?

  • More than 63% of men surveyed were not aware that testicular cancer is the most common form of cancer in men ages 15-44.
  • Even though close to 100% of those surveyed believe that testicular cancer is curable, 80% are still afraid of dying from it.
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This first point didn’t surprise me. Any time I tell someone, regardless of age or gender, that I am a cancer survivor, they immediately say, “Oh but you’re so young.” While I am flattered by my youthful good looks, I always tell them that the average age at the time of receiving a testicular cancer diagnosis is 33. Since I was 25 when I received my diagnosis, I also make sure to mention that I am an overachiever! When it comes to awareness about testicular cancer and who it impacts, CACTI’s findings solidify the need to reach men far and wide.

In regards to the second point, when a person hears the word ‘cancer,’ it’s hard not to think of death. I know it’s something I struggled with before treatment, during chemo, and while waiting on the results of chemotherapy. However, even from the initial appointment when they told me the cancer had spread, my doctors always reinforced that testicular cancer is a highly curable form. More men need to know this. Sometimes, people put off self exams and doctor’s visits since “no news is good news,” and then the cancer is allowed to spread to more advanced stages, which isn’t as easily cured. Knowing that an early detection can help improve cure rates can help get men to be more on the ball.

What we can do to change this?

This ties into my plan for an ABSOT YouTube channel. Men are the primary demographic of YouTube and are on it constantly. Making these statistics a part of videos will help viewers remember the importance of self exams.

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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