Monday, August 6, 2018

PCL35: ABSOT is Nominated for the WEGO Health Awards

A Ballsy Sense of Tumor Has Been Nominated in the 2018 WEGO Health Awards

About a week ago, I turned 27 years old. If you missed my birthday, it’s not too late for you to give me a present - or even an additional present (looking at you, Mom). Take 27 seconds out of your day to help me out.

ABSOT has been nominated for Hilarious Patient Leader and Instagram Best in Show. If you don’t feel like reading this entire post, simply click here to endorse me. It seriously takes just a handful of seconds. If it takes less than 60 seconds, please use the remaining time to do a self-exam.

Endorsing me isn’t about stoking the flames of my ego. Although I am writing this as I sit by my firepit, so essentially it’s a fireside chat - move over, FDR.

It’s about elevating ABSOT’s mission - open, frank, educational, and humorous discussions about testicles and men’s health as a whole. 

By endorsing me for this award, you will help get the ball rolling on bringing this topic to a wider audience.

I’ve dedicated a vast majority of my free time since being diagnosed with testicular cancer in November 2016 to raising awareness of testicular cancer. Among the efforts I’ve led or participated in are:

This year, the 16 WEGO Health Award winners will be honored at an in-person celebration in October co-hosted by the Society of Participatory Medicine at the Connected Health Conference. This would be a huge accomplishment for ABSOT and the work we do here.

By connecting me to health leaders and other influential members, having this opportunity would continue to amplify conversations about men’s health. 

I may be one man with one blog (and one ball), but together, we can make sure that the ball isn’t dropped on this topic. In addition to attending this celebration, the finalist in each category receives a feature on WEGO Health’s blog and social channels and special access to WEGO Health opportunities throughout the year–including chances to speak at or attend conferences. All of these opportunities would help further ABSOT’s mission.

I generally don’t ask for much from my readers, beyond requesting that you do a self-exam every month, but I’m now looking to you to help endorse me for this award. I am one of 25 nominees in this category. The three nominees with the most endorsements by August 17th, along with two additional nominees chosen by judges, move on to the final judging.

There are two easy ways to endorse me:

1) You can click on my endorsement badge located at the bottom of literally any post here on ABSOT. HTML is a wonderful thing.

2) Click here to be taken to my WEGO Health Awards profile where you can click “Endorse” under my nominee photo.

If I have ever supported you, made you laugh, or inspired you to keep fighting - please consider endorsing me for this award.


WEGO Health is a mission-driven company connecting healthcare with the experience, skills, and insights of patient leaders. They are the world’s largest network of patient leaders, working across virtually all health conditions and topics.

The WEGO Health Awards were created to celebrate those who tirelessly support the mission of WEGO Health: to empower the patient voice. With 16 award categories, the WEGO Health Awards are the only awards across all conditions and platforms, that recognize the over 100 thousand inspiring Patient Leaders who raise awareness, share information, and support their communities - but often without recognition.

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

Click the ABSOT logo below to subscribe to the mailing list for the new blog posts, latest testicular cancer information, and self exam reminders!

Don't forget to follow and share ABSOT on social media by clicking the icons below!

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

Click the ABSOT logo below to subscribe to the mailing list for the new blog posts, latest testicular cancer information, and self exam reminders!

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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.
Click to enlarge and share
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.
Click to enlarge and share
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.
Click to enlarge and share
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

Click the ABSOT logo below to subscribe to the mailing list for the new blog posts, latest testicular cancer information, and self exam reminders!

Don't forget to follow and share ABSOT on social media by clicking the icons below!

Friday, June 29, 2018

BOB04: Kyle Smith - Check 15

Kyle Smith Wants to Help Teach About the Importance of Early Detection - Check Out His CHECK15 Series!

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 Kyle Smith, who is the man behind the ball behind the brain of CHECK 15. He is also the first BOB feature I have actually met in real life (while I was at HealtheVoices18 in April) and he’s the Lefty to my Righty! Enjoy!

We are perfectly positioned
When I was diagnosed with stage 1 testicular cancer at 27, I had hopes and dreams of becoming a professional juggler. But sadly this disease ended any fruition of that promising career, because after all, juggling with only one ball isn’t very impressive.

Discovering I had testicular cancer

I first discovered two small lumps on my right testicle while innocently adjusting myself while sitting in my parents’ hot tub. They were about the size of two peas (the lumps, not my testicles). I had no pain or any other symptoms. I monitored their presence for the next two days.

Then I ran the Chicago Marathon. 4 hours and 25 minutes - It’s still my personal best. Not sure if I should give credit to the flat nature of that course or the lingering thought of possibly having cancer that drove me to run a little faster that day. But the main takeaway is that I was in prime condition and feeling perfectly normal when this all happened.

The next day, I saw my general practitioner, who sent me for a scrotal ultrasound (it’s exactly as awkward as it sounds) and to see a urologist.

Just 10 days after finding those lumps, I was having a right radical orchiectomy (medical jargon for “nut removal”), but I knew I was in good hands because my surgeon was the same man who helped save my father’s life just a couple years prior after being diagnosed with prostate cancer. One dose of carboplatin chemo, a lot of follow up scans and blood work, many more doctors touching my scrotum, and now, 5 years later, I am free and clear.

Why doesn’t anyone talk about early detection for testicular cancer?

Kyle is dead center. Like his ball. Jingle Ball. 
When I was diagnosed, I was aware of testicular cancer because of Lance Armstrong. Now, just like him, I only have one testicle and I too have technically never won the Tour De France.

Despite the press around celebrity cases like Armstrong or Tom Green, I did not know that testicular cancer was the most common cancer found in young men, and I had never been told to touch myself… for medical purposes. I mean, I guess I was never told to touch myself for other “purposes,” yet I figured out how to do that on my own just fine, but that’s beside the point. I was never told to do testicular self-exams. Not in school. Not by a doctor. Never. (Editor’s Note: Yep, I found that too with my study.)

It’s maddening to think that something so simple, yet something that could literally save your life would go so unmentioned. That’s why after my diagnosis, I decided to use my skills as a filmmaker to attempt to inform people that they should be touching themselves and that early detection is one of our greatest allies in the fight against cancer.

So I founded CHECK 15: The Monthly Cancer Awareness Day

On the fifteenth of every month, we release a new cancer awareness video. (Editor’s Note: Uniballers certainly love their specific days of the month. Remember Ken’s #Takea2nd4theBoys campaign?)

Comedy sketches. Parodies. Music videos. We’ve now been doing it for the past 55 months straight.

Star Trek. Star Wars. Stranger Things. Twin Peaks. Game of Thrones. Fifty Shades of Grey. Ghostbusters. Jurassic Park. Various Christmas Carols. Michael Jackson’s Thriller. Miley Cyrus's Wrecking Ball. (Editor’s Note: “Checking Balls” is my personal favorite. Also, Kyle is too humble, but I linked to all of these while I was editing. Go watch each of them. Now.)

If it’s a pop-culture touchstone, we’ve probably turned it into a cancer awareness video (or will one day). A lot of them are indeed ball related, but we also focus on other cancers – many of which can also be detected through self-exams or pre-cancer screenings.

We’re attempting to harness the power of social media to inform the masses and much like that famous spoonful of sugar to help the medicine go down, we’re disguising that information with a healthy dose of humor. While laughter may not literally be the best medicine, it certainly helps ease the tension and make the subject more approachable.

55 months in and we still don’t have quite the audience I would like, but despite our low views, I know for a fact that at least one friend detected his testicular cancer early because of what he learned from our videos. It’s encouraging to know it’s working, but it also means we could help more people with more exposure.

Doctors and scientists couldn’t give me a reason for my disease. So I made the creation of CHECK 15 my reason. I put forth all the tools I have learned from over a decade’s worth of industry experience in Los Angeles to make high quality products on low budgets. We also get to work with some incredibly talented filmmakers, actors, and musicians, who donate their time because they believe in our cause. I truly believe in the power of learning while being entertained and engaged creatively. Stimulating both sides of the brain leads to better retention of information. So if we can make cancer awareness PSAs enjoyable to watch and instill humor into an otherwise grim topic, then I think we can make a difference in people’s lives and encourage them to be more proactive in their health.

So go... Watch some of our videos. (Editor’s note: Seriously... do it.) Maybe even share one from time to time. You never know who in your life could be in need of this information.

And of course… don’t forget to touch yourself.

Be sure to connect with Kyle by visiting him at CHECK15.ORG,,, or 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!

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

Click the ABSOT logo below to subscribe to the mailing list for the new blog posts, latest testicular cancer information, and self exam reminders!

Don't forget to follow and share ABSOT on social media by clicking the icons below!

Monday, June 25, 2018

PCL33: A New Game Plan for A New Scan

CT Scan Number Four Post-Chemotherapy for Testicular Cancer is Different than the First Three

Though I completed chemotherapy to treat my testicular cancer about 18 months ago and was told I was in remission in March 2017, I’m still on a six-month cycle of CT scans. The risk of recurrence is highest in the first two years after treatment so my doctors want to be vigilant about follow ups.

My last scan was in December, and it was a clean one. The follow up visit was very productive, because that’s when I got help for the depression I was facing. I can math well and knew that June would be my next scan month.

 I really feel like you should be able to tell which
pic is which
Somehow, the ball got dropped in scheduling the scan. Realizing this, I decided to make a last minute phone call to make sure it was on the calendar. Interestingly enough, I made this call while I was advocating for young adult cancer patients on Capitol Hill, which coincided with both the one year anniversary of my port removal and National Selfie Day. One of these is more vital to me than the other (and it has nothing to do with surgery).

The day of my CT scan

After some battles with my insurance (shoutout to HOAF staff for going to bat for me yet again), I had my scan on Saturday, June 23. The best part is that they changed the prep protocol, meaning I no longer have to drink the gross barium solution. I arrived at the imaging center, after following the new requirement of drinking 32 ounces of water in the half hour before - child’s play, in my opinion. The scan was pretty standard and followed the same pattern as my other scans: “Breathe in… Hold your breath...” In and out of the machine. See you in six months!

The most notable thing from the scan was that the nurse took what is possibly the best scan picture I have to date. The second item of note was that I didn't feel scanxiety immediately after the scan like I usually do. I was oddly at peace, perhaps since I just had a balltrasound a few weeks earlier and that was clear.

Slight scanxiety sets in

Seriously, this pic is gold
However, this was short-lived. The Sunday night before my follow up appointment on Monday, I began to feel the tendrils of the anxiety monster creeping slowly closer. I checked into my online portal, which is a stupid thing to do since I never understand the results page, but luckily, nothing was there. I thought how the radiology tech asked me if I had a follow up scheduled with my oncologist. I told him I did and I can’t remember if he said, “okay” or “good.” While these are both four letter words, there’s a vast sea of difference, especially when the anxiety Kraken is coming closer to my remaining Black Pearl. (That’s enough with the monster metaphors, Justin.)

The next morning. there still wasn’t anything in my portal, and I resolved not to check it again until my 2 pm appointment. I decided to keep my mind occupied by reading (inching ever closer to my 100 books in 2018 goal) and cleaning toilets (being so glad that the epic post-CT barium poops were no longer an issue).

2:00 pm - time for the CT scan results

I stepped off the plane out of my car at LAX HOAF with my dreams and a cardigan of a clear CT scan. They were running behind but eventually Dr. Maurer came in. Instantly, he gave me the good news… I'm still in remission.

After checking up on my other stats and asking how I'm doing with my antidepressants, he looked at my tonsils (since I mentioned that I wasn't feeling well). Pretty much immediately, he ordered a strep test upon seeing that my tonsils were swollen. I decided to wait on the results since I was going to my grocery store and pharmacy anyways after. It also gave me time to finish up this post (thanks Google Docs app).

Looking to the future… and reflecting on this scan

This post brought to you by smiles
and thumbs up
My next scan is in December, to round out my two years of scans. Assuming those are clear, I can go to yearly checks. Hopefully we can do a January/December split so I can save my deductible, but discussions about medical bills are neither here nor there.

My biggest takeaway from this scan is that I'm learning to have less scanxiety. While I was a little anxious the night before and it was spiking while waiting on the doctor, overall, it was much lower than usual. This is also the first scan since the antidepressants have been in my system and at the right dosage. Chalk it up to that or maybe just getting used to this life as a survivor, but I'm happy with how I handled my scan this time.

Thus concludes the story of scan number four. I went in with a clear mind, got a clear bill of health… and finally came out with a clear diagnosis of no strep.

Author's Note: The next morning, I woke up and felt 100% fine. Almost makes me wonder if my feelings of sickness were scanxiety manifesting as an illness instead of worries. 

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

Click the ABSOT logo below to subscribe to the mailing list for the new blog posts, latest testicular cancer information, and self exam reminders!

Don't forget to follow and share ABSOT on social media by clicking the icons below!

Friday, June 15, 2018

PCL32: An Update to the Stupid Cancer App

The Stupid Cancer App Came Out Last Year - Time for an Update!

In the fall of 2017, the Stupid Cancer organization, in partnership with Gryt Health, released the Stupid Cancer app. I wrote about my initial impressions of the app soon after its debut and I’ve learned a lot about it since then (not the least of which is realizing that the co-founder is fellow testicular cancer survivor and August's Band of Ballers feature, Dave Fuehrer - stay tuned). They’ve released a ton of new features over the past few months.

Minor, but needed, improvements to the Stupid Cancer app

This face is also powered by Gryt
One improvement is that the Stupid Cancer app is now available on the Android platform. While that literally has no bearing on my life (since I am an Apple user… for now - I’m going Team Pixel on my next upgrade), this definitely opens it up to a wider platform. Uniballers of Droid, come find me!

Similarly, the cancer type list has been updated to include more types of diagnoses. While testicular cancer has been represented since day one (see my above comment about Dave), it’s great to see more inclusivity in the Stupid Cancer app.

You can now send live links in the Stupid Cancer app, which is very helpful instead of having to retype or copy and paste (aka copy pasta) a link into your web browser. This seems like a minor improvement, but as a millenial, having to do a few extra clicks are the worst thing that has ever happened to me (he says on his blog where he’s also written about losing both his left testicle and all of his hair, regrowing white blood cells, and emptying the contents of his stomach for five days straight).

Finally, the most important improvement is that A Ballsy Sense of Tumor is now listed as a Favorite Resource on the Stupid Cancer app. Stop what you’re doing, go add it right now (it’s currently the last one on the list - scroll all the way down), and then come right on back to this post!

My favorite improvement to the Stupid Cancer app

Two of the most popular chatrooms
As I expressed in my initial blog post, my biggest desire for the Stupid Cancer app was for individual chat rooms for specific cancer types. While these still don’t exist (I’m still holding out for The Ballroom), they do now have chat rooms defined for special purposes.

The Main Chatroom is kind of the “catch all” and hasn’t changed much since the original iteration. This is where you go just to hang out with the cool kids. There are also individual chat rooms about faith, food, caregivers, and newly diagnosed with cancer. Poke around to find your tribe.

I spend most of my time in the AppChat room. This is where their various chat series occur, including ones dedicated to specific types of cancer (I still want a dedicated Ballroom, especially to discuss my testicular exams and doctors offices research study with other testicular cancer survivors/patients, which you should read and share widely here!), special programs (like the Movie Club), and more. I don’t want to appear too biased, but the best AppChat occurs on the second Thursday of every month.

The best AppChat on the Stupid Cancer app

From 8:00 to 9:00 pm EST on every second Thursday of the month (previously Tuesdays), you can join the AppChat room of the Stupid Cancer app to participate in the “How to Tell Your Story” chat series, led by this incredible, handsome, witty, and very humble testicular cancer survivor that runs a fantastic blog. (Spoiler - it’s me.)

All cockiness aside, I do really enjoy leading this series. I have a regular group of cats that I try to herd into a coherent conversation about how and why to tell your cancer story, but sometimes even I get caught up in discussing the epicness of cinnamon rolls.

So far, we have covered developing a title, where to begin, the tone and purpose, structuring and finding supports, how to use your story to spread awareness, focusing on your audience, and a brief discussion on promotion. In the next few months, I want to transition into making this more of a writer’s workshop, in which we all gather to share our stories, give and receive critique, and help each other grow as writers.

My pun game is strong everywhere
There’s power in sharing your story. It’s about not letting cancer happen to you… it’s about grabbing cancer by the ball(s) and making it work for you. By joining this club (that you never wished to be a part of), you’ve already taken the first steps towards telling your story.

If you’re interested, I’d love to see you drop by the AppChat room of the Stupid Cancer app and join in the fun. Despite what some of my regulars say, I am actually pretty nice and easygoing. Don’t believe a word they say… unless it’s about my ridiculous overuse of ball puns - that’s all true.

A conversation with Aerial Donovan of the Stupid Cancer App

Beyond my own use of the app, I’ve had a chance to talk with the creators behind all of the features and learn about the 'why' behind the app. While I was at HealtheVoices18 (read about Days 1 & 2 here and about Day 3 and my reflection here), I got to meet with Aerial Donovan, the Program Director of Gryt Health. Among other topics, we discussed future features of the Stupid Cancer app. We discussed the ability to filter users, since right now the only way to see matches is by changing your cancer type. They also have more avatar customizations coming out shortly, and I’m hoping for a spiky look as an option. I’m looking forward to these and other features and can’t wait until it rolls out.

But the upcoming features of the Stupid Cancer app weren’t was struck me most - it was the passion in which Aerial spoke about the app and how it clearly was reflected in the entire Gryt Health team.

One feature I inquired about was the ability to send pictures in the main chat room, since I thought this might help with facilitating a chat by posting graphics of the questions. She understood my request and then shared how hard the team has been debating whether or not to allow pictures in the main chat room (they are allowed in individual messages). In my mind, I couldn’t understand why this was such a big issue.

But then Aerial dropped a truth bomb that made it all clear. The main chat room is where most people get their feet wet. There’s a sacredness to being anonymous. While I am super on the ball when it comes to talking about my cancer experience, this may not be everyone’s decision. Preserving a space where you can just be an avatar makes it a safe place to be Justin B. as opposed to Justin Birckbichler, King of the Ball Puns. Once you feel secure and welcome in the community, you can branch out into DMs and share as many pics as you want with your newfound friends.

That single anecdote really illustrated how much integrity Gryt Health has behind the scenes. They are truly a great company of many extraordinary individuals, and I am proud to say I am not receiving any compensation in saying this (aside from a cool hat and shirt, but that’s since I’m an Uber Ambassador - it’s a real thing!).

I am also honored to say that I consider the CEO Dave a close friend. Recently, he gave a talk at CancerCon about the app. I feel it really speaks to what the heart of this app is all about, so enjoy it below, though it kind of makes the rest of this post redundant, so thanks for that, Dave. It also has an incredible video name (and How to Tell Your Story is mentioned around the ten minute mark)!

Thank you, Gryt, for making such an awesome place in the Stupid Cancer app, and I can’t wait to write the eventual third edition of this post...

And by then, I fully expect the Ballroom to be 100% operational for those of us who are operating with 50% of the standard amount of testicles.

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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Tuesday, June 5, 2018

PCL31: What's the Deal With Testicular Exams at the Doctors? A Research Study

We Asked 550 Men, “Do Testicular Exams Happen at Your Annual Physical?” Survey Says...

About 51 percent of men said their doctor physically examined their testicles, while 42 percent said they did not have an exam done, and seven percent could not remember. (I feel like this is something most people would remember, but hey - to each their own.)

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While those figures are dismal, responses to the next two survey questions get worse. 78 percent of men reported that their doctor did not teach them how to do a testicular self-exam, and six percent said that they didn’t remember, which is effectively a no in my book. Similarly, only 11 percent said their doctor told them how frequently to do a self-exam.

Of the 550 respondents, 87 percent of the men were in the 15-50 years old range. This is great, since 50 percent of testicular cancer cases occur in men ages 15-44. The remaining 13 percent were either above 51 or below 14.

Thirteen respondents reported that they had been diagnosed with testicular cancer at some point in their lives, which is slightly higher than the average of 1 in 250 men who will develop testicular cancer in their lifetime. This may be due to the fact that some of my social media postings about the survey were seen by fellow survivors.

In the survey, there was an optional, open-ended section where people could share their own comments. These were some of the more interesting ones:
“Never had an exam by a doctor and I am 60.”

“I haven’t had the doctor warn about testicular cancer or been told to do self exams since the age of 12....” (This respondent was in the 21-30 years old range.) 
“I have since asked my GP for a physical and he downplayed its importance, declining to do one as I am young and it's probably not necessary.” (This respondent was also in the 21-30 years old range, also known as the high risk age range.) 
“I was told I was no longer in the high risk age range and didn't need a testicular exam.” (This respondent was in the 31-40 years old range, which is still considered high risk.) 
“I've had a physical every year for the past 9 years and only once has a doctor done a testicular exam on me. The last visit was with a female nurse practitioner and she apparently didn't want to get that personal. She simply asked, ‘Are you having any problems with your male parts?’” 
“I just turned 40 this year and have only had my testicles examined two times in my entire life. Once was for a sports physical in high school and [I didn’t receive one] again until 2015 when I was mentioning testicular atrophy/shrinkage. I just had my physical for 2018 and my (male) physician was actually embarrassed when discussing men's health issues and asked if we could skip the testicle examination. This was at freaking Cornell in NYC.”
For a full breakdown (including each question by age range, which shows a trend of less positive results as men age) and further analysis, click here to view more information.

Administering the testicular exam study and reactions from men

To learn more about the development and backstory to why I did this study, check out this piece I wrote for Cure.

Getting the data I just presented above was no easy task. It required a lot of creativity, support and visibility, and I knew I needed to get other health advocates and organizations involved to collect the minimum 500 responses I desired. Big thank you to I Had Cancer, CACTI, Check 15, We Are Survivors, Cancer Grad, 15-40, Mr. Ballsy, Handled With Care, So Close to Toast, and many others in helping to support this study.

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As for me, I personally focused on pushing the survey out on my various social media channels as often as I could. The study even caught the attention of Willie Garson (of White Collar fame) and Tom Green (a fellow testicular cancer survivor).

One of my favorite ways to administer the survey was doing impromptu interviews with random people - and I quite literally mean random people. During Relay for Life and HealtheVoices18, I would walk up to total strangers and ask them if I could administer a survey. Since these events were geared around health awareness, it wasn’t too hard of a sell, but if you know me, I’m no stranger to a challenge, so I went ball to the wall (as they say). Since I endlessly promote the importance of talking about men’s health (and a number of ways to do so), I knew I’d better sack up and do it myself.

I talked to guys at school (not students - don’t fire me), at the gym (talk about an awkward bench press spotting experience), at the grocery store, during my travels in Chicago, and at the airport. Bottom line - if I saw a guy or group of men, I’d approach him/them and say, “Hi! I’m a testicular cancer survivor and I’m running a research study. Can I ask you a few questions?” I may or may not have been forthcoming with the fact that questions about their balls were forthcoming.

Surprisingly, even after the ball questions were dropped (pun fully intended), most guys were totally into it. If they answered no to questions two and three, most of them even asked me how to do a self-exam. Unfortunately, I didn’t think to carry around my pair of fake testicles (and figuring that a physical demonstration would ban me from Wal-Mart... again), so I had to verbally explain it. If you’re unfamiliar with how to do one, scroll to the bottom of this (or any other) post, or check out ABSOT’s self-exam page.

Despite the overwhelming positive response from most guys, about ten men straight up refused to participate. Some of these may have been put off by a random guy approaching them inquiring about their health, but more baffling were the people who said no after their group of five other friends had done it. Frustrating, yes, but also shows that there’s still work to be done with men’s health discussions.

In my opinion, the only man who had a right to say no was the TSA agent, since he probably administers enough exams every day.

How to advocate for testicular exams and testicular health as a patient

While it is important to note that this study was not reviewed by an IRB and should not be considered a formal research study*, I do still feel this data is important. The vast majority of men are not educated about testicular health during their yearly exams.

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When you’re at your next physical, ask for a testicular exam. Be outright pushy about it if you need to - afterall, you’re probably paying a copay and/or insurance premiums; might as well get your full money’s worth. Ask that the doctor performs testicular exams on all of his male patients. No man is immune from developing testicular cancer.

If you’re unsure about how to do a self-exam, ask your doctor. Encourage him to discuss it with all men. Share this blog post and results of the study with him.

Be sure to tell your friends, brothers, fathers, and other assorted cast of male characters in your life about this. If doctors and others begin hearing the importance of testicular exams more often, it’ll become second nature to dedicate a decent amount of time to this vital task instead of treating it like a checklist item to gloss over.

As a side note, the study is still open, and you are welcome to participate by clicking on the image below. This post was published in June 2018 and any large modifications to the trends will be added to this post in a few months.

There’s another area of focus to consider here.

One thing that always shocked me was when men apologized to me for answering no to any of the questions about doctors physically examining testicles or discussing the proper technique for self-exams and how often they should be performed.

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In this study, the only question that respondents have control over is when they most recently attended a physical. 68 percent of men had attended a physical in the past year, showing an eight percent increase compared to findings from a 2016 Cleveland Clinic study. Answering no to any other question is something that lies in the hands of the doctor (or, as in the case of roughly half of the respondents, does not lie in the hands of a doctor).
Beyond sharing with guys who are at risk for testicular cancer, this information needs to get into the hands of medical professionals as well. Now that this study is complete, I plan to reach out to doctors/medical students to share my findings, ask them to change these points, and help spread the practice as widely as possible.

Men deserve to have their health taken seriously. Now that we've cracked open this nut of an investigation, the ball is in your court.

*All information was aggregated and rounded to the nearest whole percentage, which may account for any slight discrepancies in adding up to 100%. For a sample size of 550, it is to be expected that there is a margin of error in the 4.5% range. Since this study was based on men’s recall, there may be some inaccuracies in what occurred versus what was remembered.

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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