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 July’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).

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!). 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.


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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

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.

 Click for a larger image or to download and share.
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.


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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