Monday, September 17, 2018

BOB07: Matt Wakefield - Manhood: The Bare Reality

Matt Wakefield, Two-Time Testicular Cancer Survivor, Bares All About His Journey - Quite Literally. 


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 Matt Wakefield, who showed just how ballsy he is in various awareness events, including posing in a book called Manhood: The Bare Reality. Enjoy!

So I've been asked to share a few words about my two cancer experiences, and how it's changed me. How hasn't it changed me? Well, I have two birthdays, 23rd April, when I was born and 22nd June, when I joined the cancer community.

I'm a double testicular cancer survivor, a Flatbagger, if you will.


It looks like it's cold as balls up there-
Oh wait. 
I was first diagnosed in 2000, when I was 20. Before then, I was quite ignorantly ignoring the lump on my left nut for about 9 months. Why did I ignore it? Mainly the typical reason men ignore problems down there - ignorance and embarrassment. When I finally bit the bullet and told my parents about it, and in turn my GP, the lump had grown from the size of my little finger nail to the size of my finger and thumb put together.

On 22nd June, I had a hospital appointment and found out it was more than likely testicular cancer. The urologist telling me the news said he was so certain the lump was malignant that he would bet his house on it. I was shocked and I thought I was going to die. But I was also defiant; I wasn't going to go down quietly!

A week later, I became a one baller (Editor’s Note: I prefer the term Uniballer, but this may just be a USA/England difference. Jolly good!), and shortly afterwards, I got the results that it was cancer - Stage I seminona. A CT scan revealed that while it may not have spread, I would soon begin a course of radiotherapy to nuke away any cancer cells just in case. As the radiotherapy would have an adverse affect on my fertility, I decided to freeze some sperm in case I wanted to have kids in the future.

Radiotherapy came and went and life resumed its regularly scheduled programming. In 2004, I met the woman who would later become my wife, Corinne. We decided it would be a good idea to have children; unfortunately my fertility was next to nothing after the radiotherapy. So we went the IVF route with the sperm I had banked. The results were Sam and Bethany, born in August 2008!

Life went on.

In summer 2014, I found a lump on my remaining nut.


Matt with his twins (while lacking
his original twins)
This time, I didn't mess around. I found the lump on a Friday night, and I was at the doctor's on Monday morning. I knew from the feel of it that it was cancer. An ultrasound scan confirmed it, and so I became a flatbagger. Again it was Stage I seminona, with no sign of spreading, but I had a cycle of chemotherapy (carboplatin) to be on the safe side.

As a result of being a flatbagger, I am now dependant on hormone replacement therapy (HRT) for my body’s testosterone. I had already been on HRT when I was a one baller, in the form of a gel (testogel) but now, as I need it full time, I am on an injection (nebido) which I have every ten weeks.

One thing you don't get told about when you face cancer is how it affects you mentally and emotionally. I was a wreck following my first round with cancer. I felt guilty for surviving, was anxious, and had an overactive imagination that it was coming back (Editor’s Note - Par the course, been there). The second time I had cancer, I booked myself in for some counselling sessions which helped me 100%.

I'm a big believer in raising awareness of testicular cancer.


Back when I was diagnosed 18 years ago, there was zero awareness of testicular cancer. Now, it has vastly improved. I have been involved in awareness campaigns for TV, radio and newspapers and magazines over the years. I have done awareness stunts, such as sitting in a bathtub of nuts - after all, you check your nuts in the bath! (Editor’s Note: Slow clap.)

Matt being on the ball on the radio
I have also been in documentaries about testicular cancer and have shared how my life has been affected by low testosterone. I have also posed naked from the bottom half down in a book called ‘Manhood- The Bare Reality’, which is about men and their penises, their life experiences, and what it means to them to be a man. That came about after seeing a shout out on Twitter by the author, Laura Dodsworth, looking for men brave enough to bare all, so I went to London to give an interview and have my picture taken.

(Editor’s Note: I have received a copy of this book and will be doing a review of it in October - stay tuned. I have already read Matt’s story and it is incredible!)

The thing is, my life is richer because of testicular cancer.


It revealed hidden strengths I didn't know were there, a true sense of resilience. I appreciate life a lot more. I have made lifelong friends with people, fellow survivors who I wouldn't have met otherwise. And of course, my kids exist because of it.

What has cancer taught me? You have zero control over what life throws at you, but you have the ultimate control over your attitude towards it.

- Matt ‘the Flatbagger’ Wakefield, aged 38.

Be sure to connect with Matt by visiting him on Twitter (@flatbagger1980) or on Instagram (@insta_flatbagger) 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!


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Tuesday, September 4, 2018

PCL37: Making Testicular Self-Exams Standard Practice in Virginia's High Schools

Early Detection of Testicular Cancer Saves Lives And It Needs To Be In High School Health Education. Here's How You Can Help.


Looking to access the PSA immediately? 

Click here to watch the video.


Part of being a fourth grade teacher (my full-time job for the past five years) is the dreaded end-of-year “your body is going to start changing” talk. While I can talk to adults about balls until I’m blue in the face, it’s hard to switch from teaching ten-year-olds about factors to penises (although both are used for multiplying).

After completing my yearly lesson, I started wondering if the Virginia health curriculum includes education about testicular self-exams. 


I did some research and found that self-checks are only explicitly mentioned in one standard in 9th grade: “The student will demonstrate understanding of specific health issues, including the ability to conduct self examinations.” It’s indirectly mentioned in 10th grade: the student will “identify regular screenings, tests, and other medical examinations and their role in reducing health risks.”

Filming at the High School
In my opinion, these passing mentions are not nearly enough. Doctors recommend that both testicular and breast self-examinations are done once per month when full physical maturity is reached. For some students, this could be as young as fifteen years old. During their eleventh and twelfth grade years, Virginia students are not exposed to any information about the importance of self-examinations, which is when most students will have reached full maturity. The current standards were, in my opinion, not enough. It’s unrealistic to expect students to form the habit of regular self-exams based on one passing mention in ninth grade. This reality is even more alarming when paired with a 2016 study by the Testicular Cancer Society that found over 60% of young men have never been told about testicular cancer. Something needed to be done.

As a man of action, I decided to write to the Virginia Department of Education (VDOE) to express my concerns and to work with them on a solution. 


Within a few weeks, Vanessa Wigand, the VDOE Coordinator of Health Education, Driver Education, Physical Education & Athletics, emailed me back. She suggested that I script and star in an instructional video about testicular cancer and the importance of self-exams. Furthermore, she suggested having high school film department students film, edit, and produce the video. I loved that idea, especially the part about having high school students assist, as they are a part of the target demographic I’m trying to reach.

Around the same time as my discussion with Vanessa, I was at an EdTechTeam Apple Conference, and attended a session by Steven Knight, the Coordinator of Digital Learning for Falls Church City Schools. Since his presentation was all about video production, I approached him about having his students help produce the video. He loved the idea and later shared that he is also a cancer survivor.

With the technical side of things locked down, I began to work on the script the self-exam video. 


Presenting at HPAI
With the help of my sister, a high school senior, I polled some high school students and asked them what they’d want in a self-check video.According to the results, they’d like something that included a blend of humor, serious information, personal stories, and a how-to. I kept these recommendations in mind as I wrote the script.

I knew that my story wouldn’t necessarily be the most relevant to high schoolers, since I am ridiculously old compared to them. I needed someone their own age to share his story, so I reached out to Grant Moseley, a current high school senior and testicular cancer survivor who was diagnosed at 17. He agreed to write and share his story.

In early April, which is also testicular cancer awareness month, I filmed my sections, including my own story, information about testicular cancer, and narrating an animated self-exam demonstration, at George Mason High School under the direction of Steven, Kenneth George (the school’s film teacher,) and his high school student film crew. Beyond the coolness factor of being on camera, I loved seeing the three male students show expressions of intrigue while I shared some facts about testicular cancer. Later, when I spoke with one of the students, he said he had previously heard about testicular cancer but never knew exactly how to do a self-exam before filming. Mission accomplished.

Full disclosure - while I had my lines totally memorized well in advance, I messed up about 384 times while filming. Something about having two cameras on you is intimidating, but I felt confident in my final takes and in the editing skills of the students.

Finally, the PSA (Personal Scrotum Assessment) was completed.


My faith in them was rewarded - they actually made me look good! Rather than tell you about their awesome work, I’m embedding the final product below (or watch it directly on YouTube here). While it is 11 minutes long (practically decades in this era of YouTube), it’s well worth the watch!


I had a chance to debut the video at the Virginia Health and Physical Activity Institute. 


In two sessions, I provided statistics, tips, and other information about testicular cancer to a number of health educators and curriculum coordinators. The attendees seemed to enjoy the video and especially liked that it was a comprehensive resource that covered all the bases, with a great blend of personal stories, information, school-appropriate humor, and an animated self-exam demo. Many eagerly asked where it would be located so that they can use it in their own districts.

Vanessa happened to be in the session and said that the video is posted on Health Smart Virginia, which is an online depository of lesson resources. To access it and other resources, visit this link and select "Health Smart VA Lesson Plans" under "Health Promotion." Scroll to Unit 27 - Grade 9 - Testicular Cancer 101 Video. These resources are also located in similar places in Grade 10, but it's the same information either way.

She also said she will send it directly to all health curriculum coordinators across the state, which will hopefully help the video become regular viewing material for all high school grades.

While I am honored to have made an impact on Virginia’s curriculum, I always want to have as big of a reach as possible when it comes to testicular cancer awareness. 


In the 50 states of the US (and Washington, DC), only 18 states make a specific mention of testicular self checks in their mandated health curriculums. Of these 18, only two states (California and Washington) include standards that address how to do a self exam in grades 9-12. Consult the map below to see if your state made the cut or not.


If your state has room to grow, please send this blog post or the link to this educational site (which is also posted on Health Smart Virginia) to the relevant parties in your state. I personally plan on reaching out to the “Vanessas” of each state in hopes to make this a national project.

In closing, I would like to offer a sincere thank you to all of those who helped support this project, including Vanessa and the VDOE, Grant Moseley, the Moseley family, Eric Manneschmidt (who filmed and edited Grant’s section), Steven Knight, Kenneth George, the high school film students, my colleagues at school who helped review my script, and countless others. This was truly a collaborative project.

We put forth the effort to produce this video, and now the ball is in your court to watch and share this video. As I said in the closing of the video, together, we can get the ball rolling on discussing the importance of testicular 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!


https://aballsysenseoftumor.us18.list-manage.com/subscribe?u=b4883398e11f09a7628a9ac58&id=b967eb48f2

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Sunday, August 26, 2018

BOB06: Dave Fuehrer - Gryt Health

Dave Fuehrer, Two Time Testicular Cancer and Founder of Gryt Health, Says, “Losing My Balls Helped Me Become More Of A Man."


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 Dave Fuehrer, the founder and CEO of Gryt Health, the minds who developed the Stupid Cancer App (check out ABSOT’s posts about the App here). Dave recently gave a Ted Talk, entitled “The Science of Living”. Enjoy!

I won’t try to convince you that going through testicular cancer twice in my twenties wasn’t physically painful. It was. But when the physical pain started to subside… a new tidal wave of emotional, mental (and even subconscious) pain began to take its place.

In the few short minutes I have to convey something meaningful, I want to focus on how much we suffer beyond the physical challenges of cancer. As men, we often hear comments like “Be strong,” “Tough it out,” or my personal tormentor: “You gotta have balls to try something like that.”

I’ll admit it, before facing testicular cancer - I fully bought in to that mentality.


Surprisingly, this is not the face of pain
As a former athlete, ignoring pain is what made me who I was. For context, this was me winning a New York State Natural Bodybuilding Title in 2001.

A few months after winning the title, I felt something different in my groin. I just had this really weird feeling about it. I was a senior in college and remember walking into the Health Services office. Whatever I said, they got me right in (Editor’s Note: Sounds like the doctors were about to actually get the right out) and then immediately sent for an ultrasound at the hospital. Testicular cancer. BOOM. Just like that. I remember thinking “How fast can I recover from the orchiectomy and get back to the gym?” And that was it, ignoring pain again as quickly as I could.

Five years later, I started to notice changes in my other testicle.


You might think having one diagnosis already… I would be eager to get it checked out. But denial is a powerful thing, my friends. I waited several months (with continued atrophying) until my routine check-up.

It was a whirlwind of a few weeks. CT Scan. Followed by MRI. Followed by immediate attempts to determine sperm count. “None present.” Then immediately into surgery...

Dictation Date: 13 March 2007

SPECIMEN: LEFT TESTICLE

--- SEMINOMA, 1.8 cm

--- MULTIPLE FOCI OF INTRATUBULAR GIANT CELL NEOPLASIA WITH FOCAL AREAS OF SEMINOMA

That’s what my surgical pathology report reads. I have it in front of me as I write this. Almost not believing it was me, Patient No: 342661320XX.

Soon thereafter, I started radiation treatments, covering my pelvis through my abdomen. I remember feeling dirty inside - like my body was betraying me. Still, I just wanted to ignore it all.

But while ignoring pain can be a highly effective approach to athletics, it is the direct enemy to men’s health. My training as an athlete taught me to ignore all of the real pain I faced from cancer (including anxiety, PTSD, isolation, and loss of identity),. What I’ve learned in the last 10 years is that you can only ignore these things for so long before they overwhelm your life (at least, this was certainly the case in my life).

A few years ago, I made what I thought was a mistake. I was so full of pain inside, that I let some of it slip out. In a moment of breakdown, I admitted how broken I felt. But this started to change my life. People didn’t judge me in the way I expected - quite the opposite, actually. They thanked me for being open and told me how strong I was to be vulnerable. (If you’re a man, your internal monologue is probably going crazy right now!) Admitting pain, crying and asking for help...how could anyone see me, a former bodybuilder, as… strong?!

Fast forward to 2018 - I’m a far different man after facing testicular cancer twice. 


I had the honor of giving a TEDx Talk this year. It was the most honest I’ve been about my experience as a two-time testicular cancer survivor. Getting to this point was only possible because of the “mistake” I thought I made all those years ago.


Between that moment of starting to let things out and today, my life has completely changed. I’m humbled to play a small part of helping men (and women) in 80 countries feel proud of who they are after cancer.

I work with a team of inspired survivors and caregivers at our company, GRYT Health (pronounced “grit”). Together, we have built and run a free app that’s used by survivors and the people who love us around the world. The purpose for our app is to help others like us live on our terms. Nobody is more of an expert on our life than we are. When we think of ourselves as a “patient” or “caregiver,” we’re dependent on others. At Gryt, we think of ourselves as Healthcare Consumers - those who are empowered to know our options and choose what’s right for us. As Healthcare Consumers, WE are in charge.

If you look at this picture with
3D glasses, Dave actually
appears to have two testicles
If you ask me what I hope my legacy in this world will be, my answer will be counted in the number of lives changed. In the number of people who felt helpless but now feel hopeful. In the individuals who went from feeling out of control or alone to those who now feel empowered and connected.

I am truly grateful for the leaders of this movement who help each of us stop “being tough” and start talking openly. I admire Justin at ABSOT for his willingness to be open about our struggles - the physical ones, and even more importantly, the emotional ones. (Editor’s Note: Aw Dave, you make me blush, but since you said something... if you're reading this, check out this piece about how to talk about testicles.) I am in awe to see organizations like The Movember Foundation (through their TrueNTH Testicular Cancer program and their Quality of Life pages) support and celebrate men’s health in the way they do.

If I can ask you to take one action, it is to admit to something that scares you.


Admit it to a friend, to a partner, or to a piece of paper. But just admit it. Getting that fear out of the darkness inside us and exposing it to light is the first step in changing the world. And it is the first step in helping men become of the men we’re proud to be. Thank you for changing the world with us.

Be sure to connect with Dave by visiting him at www.facebook.com/grythealth www.instagram.com/grythealth www.twitter.com/DaveFuehrer #MensHealth #OnMyTerms #poweredbygryt. 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!


https://aballsysenseoftumor.us18.list-manage.com/subscribe?u=b4883398e11f09a7628a9ac58&id=b967eb48f2

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

Thursday, August 16, 2018

PCL36: Three Self-Care Tips from a Testicular Cancer Survivor

As a Testicular Cancer Survivor, Self-Care is Very Important to Me. 


While I spend a lot of my time working on ABSOT and other cancer awareness and advocacy projects, I’m also careful to make sure I’m not investing every single moment of my day into this work. I’ve talked about how I have focused on healing my mind, but it’s been just as important to take care of my body.

Exercise is what I do solely for me - it’s my form of self-care. I was honestly ashamed of my bloated and flabby body, lack of endurance, and pitiful amount of strength post-chemo. I finally decided to do something about it a year ago, in August 2017. Since then, I’ve shed over forty pounds, dropped nearly ten percent of my body fat, increased my running stamina, and nearly doubled my maximum lifting stats.

Chemo journal is the bigger one,
just in case you thought WBC Low
was some sort of extreme lift.
These three tips are how I’ve grabbed my life by the ball(s) and made a commitment to making my post-cancer life the best it can possibly be. While exercise is what I’ve chosen as my form of self-care, it may not be yours - and that’s totally fine. The following tips can all be easily adapted to whatever form of self-care you choose. Find what works for YOU.

Apply old cancer habits to new endeavors in self-care


While I was going through chemotherapy, I kept a journal of how I felt at certain hours of the day, medications I took, my temperature, and the amount of testicles I currently possessed (spoiler - it was always one).

Now, I use that meticulous record keeping habit for a different purpose - tracking my weight lifting routines. Every single workout is logged, including how many pounds I picked up and subsequently put down, how I was feeling that day, and how many sets I did.

Another major component of chemo was strict scheduling. I had a timetable of when I had to be at chemo and what treatments I would be receiving. These days, keeping a schedule is just as important - straight to the gym from work. I may not necessarily write it down always, but I have a plan for which muscle group and run I do on each day.

  I lived with a rigid schedule and a journaling habit for many months, and now I’m retooling these habits to benefit my self-care routine.

Repurpose cancer objects into self-care motivational tools


Not to humblebrag or anything, but I get a lot of compliments on my gym bag. If you’re reading this without looking at the pictures (which is an impressive feat in and of itself), it’s a backpack with various Marvel characters on it, represented in a stylized cartoon format. It may or may not have been designed for fourteen year old boys, which are half my age, but I have half the amount of testicles as they do, so I think it all balances out

Even though I am wearing the same bandana in
both of these pictures, they were taken weeks apart.
However, this bag used to be what I used to carry my personal effects to and from chemo. By bringing the same bag with me to the gym, it’s a constant reminder of where I was and my motivation to take care of myself to get to where I want to be.

My iPad traveled with me to chemo, and it still has a place in my bag today. The purposes I use it for are even similar. My iPad, which is a vintage model (to be generous) is basically a way to watch digital movies and TV. However, while it was used during chemo to Netflix and chill (I’m 98% sure I’m using that term correctly), it’s now used to Vudu and run (not as catchy, admittedly). Sometimes, I just plain don’t feel like running, but by seeing that iPad poking out from my former chemo bag, I remember what it was like to not even have energy to do a flight of stairs.

Finding physical reminders and repurposing them for my self-care routine helps keep me motivated to stay on the ball with my fitness regimen.

Set self-care goals, but don’t beat yourself up if you don’t meet them


Both minor and major goal setting was a huge component how I faced cancer. Some of my minor and more short-term goals included eating lunch, walking around upstairs, and not throwing up for the next hour (admittedly, I failed pretty epically on that last one). Goal setting gave me something to work towards and focus on, and I’ve applied that to my self-care routine today. If I did 2.2 miles in a 20 minute interval run this week, I’ll aim for 2.3 the next. I did 8 pull ups on that last set; I’ll shoot for 9 the next time. Small goals help keep me motivated and moving along.

This pic took a ridiculous amount of effort and
skill with a self-timer
My main cancer goal (as is the goal of most cancer patients) was to beat the disease. Since I am writing this, I’ve clearly achieved that goal and I am thankful every day for that. However, I did not achieve my primary goal I set for myself when I began working out in August 2017. I had a plan - I would have a max bench press of 225 pounds, something I had never been able to do this when I was an avid lifter in college. While this was a completely arbitrary goal, it felt like a good amount of weight to aspire to (and two plates on each end seems really cool, though two of one thing seems to be excessive in my opinion).

It’s now August 2018, and my max bench press hovers around 200. For those of you who may struggle with math, this is approximately 25 pounds less than I planned on attaining. To be frank (and this is not to be confused with ‘to be Frank,’ my neighbor who I aspire to be one day and who is a fellow cancer survivor), I was very disappointed in myself at first. I pride myself on reaching goals, and I failed.

But then I flipped back to my lifting journal and saw where I started in August - barely 100 pounds. I wasn’t kidding in the introduction when I said I had no strength. By lifting 200 pounds, I’ve nearly doubled my bench in a year. This is a huge proportional increase, and this isn’t even to mention the gains in other areas of lifting or the great strides in running progress - pun fully intended.

Both small and large goals are great, but don’t let them bury you.

A final note on self-care


Self-care is important, and we need to take time for ourselves. You don’t owe anyone any explanation of your preferred method, and it’s not always necessary make a big deal over how or what you’re doing to take care of yourself. While I am exercising, I often think about what I’ve been through and what kind of person I want to be. It’s an intense moment - both physically and in the reflection aspects.

Physical fitness is a great idea, especially in the case of cancer survivors, since the American Cancer Society recommends at least 150 minutes of moderate activity per week to lower risk of cancer.

No matter what you choose as your form of self-care, make it a priority. We can’t give our 100% to others if we’re not taking care of ourselves first. While this may seem selfish, as a cancer survivor, I realize I’ve been given a second chance at life - and I intend on making the most of it.



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!


https://aballsysenseoftumor.us18.list-manage.com/subscribe?u=b4883398e11f09a7628a9ac58&id=b967eb48f2

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

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. (Please note: Endorsing for 2018 is now closed, but you can still read why I asked for endorsements.)

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.

#relatable
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.

ABOUT WEGO HEALTH:


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!


https://aballsysenseoftumor.us18.list-manage.com/subscribe?u=b4883398e11f09a7628a9ac58&id=b967eb48f2

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


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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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