Tuesday, January 15, 2019

BOB11: Jon Barr - Here Be Barr on YouTube

Jon Barr Shared His Experience with Testicular Cancer on YouTube - It's Been Viewed Over 36k Times!


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 Jon Barr, a travel vlogger, who shared his testicular cancer journey on YouTube. Enjoy!

I was on top of the world and living in Mexico. It was mid-April of 2017 and I had spent over a month in the largest city in the Western Hemisphere, living with my girlfriend and making travel vlogs for my growing YouTube audience.

It’s amazing how one day can completely change your life


I had just finished filming a vlog about my experience volunteering at a school for the blind in the Condesa neighborhood of the city. I was voicing my outro clip on camera, and right as I completed what I wanted to say, I felt a sharp pain shoot up from the right side of my groin to my lower abdomen.

I even captured that moment on camera, which you can watch on the video below that I made about my testicular cancer ordeal, around the 1:04 mark.




It hurt so much, I had to sit down on a nearby chair. My first instinct was, this was from squatting to much at the gym that afternoon. I told my girlfriend and I noticed how concerned she was from the get-go - maybe it was the female instinct. I convinced her that I was fine, and that I would get home, lay down and it would go away.

We returned to our apartment about 15 minutes later, and I went to lie down. I had planned a video shoot the next day at some Mexican pyramids. I didn’t want anything to stop me from joining this shoot. I got back up one hour later and the pain was still there. My girlfriend insisted that I go to the hospital to see a doctor. I later learned that she had an ex-boyfriend who died of testicular cancer 10 years earlier, and any symptom of this nature was an automatic alarm for her.

Even though I didn’t know about her past with testicular cancer, I still agreed to go to see a doctor


Hat skills on fleek
We walked to a private hospital a few blocks from our Airbnb. First, a general doctor came to see me and asked about my symptoms. He felt around and concluded that I potentially had a hernia from lifting to heavy at the gym. While I wasn’t thrilled with his prediction (I had a hernia years earlier as a child), I was willing to accept it. To prove his hypothesis, I had to go upstairs for an ultrasound. I later learned that this scan was critical. While his initial diagnosis was wrong, it did lead to them finding what came next.

I laid on a cold metal table on the second floor of a Mexico City hospital and met with a technician, who luckily spoke fluent English. He applied the ultrasound wand to my groin, which was not exactly a pleasant experience. As I waited for him to find the “hernia,” I saw his eyes widen. He said, “This isn’t normal... I found something else.” I replied, “What is it?” He exclaimed, “You see this, right there? That’s a tumor.”

The words stung, I was in complete shock. I felt like I just got blindsided by a truck. I was speechless. He explained he would have to call in a urologist. The rest of the night at the hospital was a bit of a blur. The urologist explained what would likely come next: I would need blood work, a CT scan to see if the likely cancer spread and I had to make a decision if I wanted treatment in Mexico or the United States. The decision was easy, and I flew home to NYC the next afternoon.

Back in New York City, my testicular cancer journey moved along swifty


The doctors at NYU’s Langone Medical Center, got me in the day after my flight arrived. A second ultrasound was done, confirming the tumor, and I did blood work, chest x-rays and a CT scan that afternoon.

The hardest part of any medical situation is not knowing. The days I waited for the results of my blood work and CT scan to see if cancer spread to other parts of my body was the most agonizing of my life. By the end of that weekend, I decided I was ready for whatever came my way, good or bad and that I would take it one step at a time.

My doctor called on Monday and asked me to get out a pen and paper. I was locked in for the news. The bloodwork was okay, and the CT scan showed no spread. It was the best news someone in my situation could receive.

I still had one final hurdle - surgery to remove the tumor, along with my right testicle

That Friday, I went to NYU for the first surgery of my adult life and it went smoothly. There was one last bit of information I needed, the results of the biopsy to find out what kind of tumor it was, and if I would need radiation or chemotherapy.

I was walking on a Monday afternoon around the West Village of Manhattan. My phone rang, I recognized the area code, and it was my Doctor. He said, “I have your results. Good news. It’s a seminoma, the slowest moving of the cancers. We see no reason to treat you any further. We’ll put you on active surveillance for the next few years, but the odds are you’ll never need anything else done to you.”

Again, it was one of the best case scenarios, outside of the small percentage of men who have a benign tumor. While I wasn’t thrilled because I was still at a small risk of a recurrence, this good news was cause for celebration. I kissed my girlfriend, and went home to drink a Brooklyn Lager beer. I still remember the brand for some reason… Beer never tasted so refreshing.

Fast forward a year and a half, and I’m still cancer free


So much travel envy
With my role as a YouTube Creator, I have made a few videos about my experience, including the one above that has over 36,000 views. My videos encourage men to take care of themselves and listen to their bodies. (Editor's Note: He should connect with fellow Band of Baller alumni, Kyle Smith of Check15. These two Uniballers could grab the attention of YouTube by storm!)

If my girlfriend didn’t push me to go to the hospital, the cancer could have spread by the time I caught it. Before, I didn’t check myself in the shower monthly, but now I am a keen advocate for early detection. I was a 31-year old healthy young man who went to the gym. Cancer can affect anyone, and testicular cancer is the most common one for young men. It’s very treatable, but you need to be vigilant to catch it early before complications can you cost you time, money, and even your life.

Be sure to connect with Jon by visiting him at www.twitter.com/herebebarr, www.instagram.com/here.be.barr/, and www.youtube.com/herebebarr/. 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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ABSOT is endorsed by the Laughter Arts and Sciences Foundation, a registered 501.c.3 charity. To make a tax-deductible contribution to help help continue ABSOT's work with testicular cancer awareness and men's health, click the image below.

Monday, January 7, 2019

PCL44: A Look Back on 2018

New Year, Same Me: Reflecting on the Past Year of Testicular Cancer Awareness Work and Setting Goals for 2019



Generally speaking, I try to avoid writing reflective posts that have no actionable takeaways. However, I feel like after being in 2019 for a week, it’s a good time to reflect back on 2018, while also looking forward to the upcoming year.

"Four score and seven years ago... Brothers talked about
regular self exams"
Those 365 days made up quite a momentous year, both in my awareness/advocacy work and in my own continued personal healing. Since this is a recap of a bunch of articles I’ve already written, I’ll be presenting this post in a ‘Listicle’ format, so feel free to click to the links to read the whole post.

Although, a more appropriate term might be a… Test-icle.

2018 was my busiest year yet on the testicular cancer awareness and advocacy front


  • In late March, I launched the Band of Ballers series, highlighting other advocates for their efforts in raising awareness in testicular cancer. In the months since then, I’ve had the privilege of sharing eleven different stories of some incredible people, with more to come. 
  • Throughout April (testicular cancer awareness month) and June (men’s health awareness month), I surveyed over 500 men to discover what really happens with testicular exams and discussions about self-exam at the doctor’s office. I’ve left the survey open since then and accumulated nearly 700 responses. Now, the statistics stand at saying on that only 46% of the men had their testicles examined at their last physical (down from 51% originally), and 80% were not told how to do a self-exam (as opposed to 78% previously). 
  • In April, I was able to attend the HealtheVoices conference through Janssen Pharmaceuticals. The connections I made there have continued to flourish to this day and I hope to be there again this year!
  • One of my most shining moments was winning WEGO Health Award for Hilarious Patient Leader in October. Somehow, I’ve managed to trick many people into thinking that endless ball puns is worthy of recognition. Earlier in the year, ABSOT was also recognized as the Best Cancer Awareness and Advocacy Blog by I Had Cancer.

Quite the ballsy headline, no?

Beyond my testicular cancer awareness efforts, I had many special moments in my personal cancer journey


  • In June and December, I received two good follow-up scans - no active cancer in my body! This is definitely a major plus. In 2019, I’ll only have bloodwork and won’t have a scan until December (or possibly January 2020)!
  • I spent the majority of the first half of the year taking care of my mental health, through a combination of antidepressants, regular exercise, and writing. Although I never got back around to resuming therapy, it’s always on my radar as an option if I feel the need. 
  • At my December scan, it was also found that my Vitamin D was low, which can also contribute to mood swings and memory issues. I’m now on a supplement that is supposed to help, and it feels like it might be helping. 
Hitting the smize in a Bristol-Myers Squibb video
  • I opened up a lot about what it means to live life after a cancer diagnosis, including regular posts on Cure Voices and working with Bristol-Myers Squibb to share my perspective in their Life with Cancer video series that aims to help raise awareness of life after diagnosis by sharing the stories of patients and those who support them.

Looking towards 2019 in the testicular cancer awareness space


New Years Ball-Checkin' Eve
  • To be honest, I don’t have many “big goals” for 2019. I want to continue doing what I am doing and help improve on the work I’ve already done. 
  • In late 2018, I became a weekly columnist for the Good Men Project and a brand ambassador for Zeus Beard. These two additional roles are vital pieces of the puzzle as we move into 2019, as it helps me reach my “target market” with more regularity and ease. Both organizations have been so welcoming and understanding of my goals and I am excited to see what these opportunities hold. 
  • In another new role at the latter half of 2018, I joined the Board of Directors for the Crush it for Curtis Foundation. Now in 2019, my ‘title’ is officially Director of Men's Health Programs, and will be more solidified as the organization begins to get more involved in the men’s health space
  • The results from the aforementioned survey still are bothering me. A self-exam saved my life and I find it ridiculous that it’s not a common occurrence and talking point in physical exams. A big reason for this may be that the U.S. Preventive Services Task Force recommends against them for a variety of reasons, including “unnecessary testing.” However, if a testicular lump is detected, a scrotal ultrasound is done, which does not have any harmful side effects. The USPSTF also used to recommend against both mammograms and prostate PSA tests, but they were overturned. There are a variety of advocates working to do the same for testicular examinations, and I want to help join this force. 
  • Finally, I am going to be focusing on getting the PSA into high schools, starting with the school district I currently work in. While the production of the video is awesome in and of itself, it’s not serving its primary purpose of educating high school students by just sitting on YouTube. 

The ball may have dropped on New Years Eve, but I’ve only begun to crack the nut on my testicular cancer mission




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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ABSOT is endorsed by the Laughter Arts and Sciences Foundation, a registered 501.c.3 charity. To make a tax-deductible contribution to help help continue ABSOT's work with testicular cancer awareness and men's health, click the image below.

Thursday, December 20, 2018

BOB10: Mike Craycraft - The Testicular Cancer Society

Mike Craycraft Founded the Testicular Cancer Society to Help Raise Awareness and Improve Care for 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 Mike Craycraft, who founded the Testicular Cancer Society. Enjoy!

When I first heard the doctor say, “It looks like you have cancer,” I wasn’t shocked at all. In fact, unfortunately, I was all too well prepared for it. I had felt a lump on my left testicle some seven months previous and immediately “knew” it was cancer. However, instead of going to the doctor I remained silent, not sharing my concerns with anyone.

At the summit of Kilimanjaro for his 7th Cancerversary
During this time of “silence” I convinced myself that I was going to die from metastatic disease and even “made peace” with it. I took a long hard look at my life and realized that, although I didn’t want to die, that I had lived a great life already with incredible friends and family and that I was way more fortunate than others have been. I even went as far as to throw a party in my hometown of Cincinnati during Thanksgiving weekend but didn’t tell anyone that it was my “going away” party. I figured in a few months that my friends would find out that I was dying of cancer. They’d realize that me buying some beer and getting people together was my feeble attempt to see everyone one last time.

I should have known that going to the doctor immediately was my best option when I suspected testicular cancer


As a clinical pharmacist, you’d think I would be smarter than I was being. However, I specialized more in cardiac, critical care and infectious disease medicine. Besides knowing that testicular cancer existed, I knew little about the disease.

Miraculously, despite the seven month delay, I was diagnosed with stage I seminoma. At the time, three weeks of radiation therapy, just to make sure that the cancer did not return, was the gold standard of care. However, a wait and see approach, called Active Surveillance was beginning to come into favor and a single dose of carboplatin chemotherapy was an option too but was still a bit too investigational for wide acceptance in the U.S.

Being a clinical pharmacist, I believed in primum non nocere (first do no harm) and decided that Active Surveillance was the correct approach for me. I chose to defer radiation therapy or chemotherapy until if I relapsed and definitively knew it was needed.

Amazingly, 12 years on and I have not faced a relapse. Today, Active Surveillance is now the preferred approach for stage I seminoma so perhaps I was a bit ahead of my time in selecting this as the best option for me.

Once I was diagnosed, I opened up about testicular cancer and have never stopped doing so


I reached out to whomever I could find that had been affected by the disease and started asking about their experiences and how they made treatment decisions. I began to learn of the journey of others and more specifically what resources were missing from that journey. When I was diagnosed, some 12 years ago, there was very little, even on the internet, about testicular cancer.

Talking balls in Ireland
Given my experience as a survivor and my knowledge as a medical professional I figured that I was uniquely positioned to help change the world of testicular cancer for the “next me” that was diagnosed.

To achieve this, I founded the Testicular Cancer Society. Originally, I envisioned it as kind of a hub in a tire and figured that I could easily point people down the spokes in the direction of what few resources were available and then develop resources that didn’t yet exist.

Today, we focus on reducing the burden of the disease by simultaneously working to increase early detection, access to care, and quality of care. We strive to make sure that those affected by testicular cancer (the fighters, survivors, and caregivers) are not facing things alone and have the best support and resources available to help assure positive outcomes.

I am often asked, “What does the Testicular Cancer Society do?”


My best answer is that until you contact us in need you’ll never really know exactly what we do. I know that is a horrible elevator pitch, but it is the truth. Fellow “Band of Ballers” Dave Fuehrer once said that we, helped people “go from overwhelmed and unable to cope to having a new perspective and hope.” (Editor’s Note: Seeing one Uniballer reference another survivor is a heartwarming feeling. Mike and Dave are two of my favorite people in the cancer space, with one nut between them.)

I like to believe that this is indeed the case and each person we connect with differs in what they need.

In medicine, I was trained to give the answer that is needed and not necessarily the answer to the question that is asked. I do this all the time in helping those affected by testicular cancer. While I can answer their direct question, I more impactfully provide the answers they need and help avoid pitfalls in their care. For example, the answer to, “Where can I get financial assistance for my care?” is that none really exist unfortunately. However, given my experience in health care I can usually make some calls and get the care that is needed.

In fact, not once have we been unable to find care for someone, regardless of the patient’s insurance status, ability to pay, or our limited resources as an organization. It is somewhat amazing that some of the largest cancer organizations in the nation, those that raise tens of millions of dollars a year, refer patients to us. They have no resources for testicular cancer and yet we are able to help overcome any access to care issues.

I am frequently asked why I continue to do what I do with testicular cancer?


Hopefully, I’m not risking sounding braggadocious, but it is because I am not sure who else can or would. I do believe I am unique in having the sincere empathy as a fellow survivor, the in-depth medical knowledge to converse with world-experts on the disease, and the communication skills of a pharmacist to be able to explain things to the patient and caregiver.

I have developed relationships with experts across the globe to help advance the access to quality care. I have published articles in medical journals, have developed research partners for further publications, reviewed other’s articles for publication, and even review proposals for cancer research funding. Most importantly, I have continued to have the compassion and open ears to listen to those newly diagnosed, to those mothers, wives, and girlfriends that are scared for the man in their life and console each the same.

One of the best ways to reduce the burden of testicular cancer and save lives is via early detection and treatments. If diagnosed with stage I disease, the 15 year-survival rates are almost 100% and most men can avoid chemotherapy, radiation and more aggressive surgery.

However, getting the attention of young men and having them realize that they are most at risk for the disease and convincing them to do monthly testicular self-exams is like herding cats.


While our social media and web properties reach several million people a year, this post from the Super Bowl reached over 1.7 million individual users on its own, we have come up with some unique ways to achieve our awareness goals.

At the opening of Funeral Day
We developed a mobile app, Ball Checker, with a few facts about testicular cancer, instructions on how to do self-exams, and the ability to set monthly reminders. To date, the app has been downloaded in over 140 countries. (Editor’s Note: That means a minimum of 280 testicles have been checked… give or take a few!)

Beyond the app, we also have a monthly text reminder program where people can text @selfexam to 81010 and then once a month we send a reminder to do their self-exam with a link to instructions. We don’t use the system except for the monthly reminder and the person’s cell number is never revealed to us.

Furthermore, we have also forged partnerships with other non-profits and industries to help raise awareness. A perfect example was our partnership with Patient Point this fall that delivered our awareness video message into over 4,500 primary care physician offices.

We also have partnered with the movie Funeral Day, not only to have the rights to show the movie for educational purposes, but they have also graciously helped with some Testicular Cancer PSAs that we are currently releasing.

While we can’t prevent testicular cancer, we hope that by simultaneously increasing early detection, access to care and quality of care, that future guys diagnosed will be minimally impacted by the disease and get back to living their their lives immediately.

Be sure to connect with Mike and the TCS by visiting him at:

https://www.facebook.com/mikecraycraft

https://twitter.com/pharmacistmike

mike@testicularcancersociety.org

http://www.testicularcancersociety.org/

https://www.facebook.com/testicularcancersociety

https://twitter.com/TCSociety

https://www.instagram.com/tcsociety/

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!



ABSOT is endorsed by the Laughter Arts and Sciences Foundation, a registered 501.c.3 charity. To make a tax-deductible contribution to help help continue ABSOT's work with testicular cancer awareness and men's health, click the image below.

Tuesday, December 11, 2018

PCL43: There's Snow News Like Good News

Winter Storm Diego Brings Me Two Days Off From Work... and a Set of Clean Scans! I'm Still Testicular Cancer Free!


The weatherman predicted one to three inches of snow from Winter Storm Diego. In actuality, we received closer to six. With either amount, this equalled one thing - a snow day on Monday, December 10th, 2018. Even though I transitioned out of the fourth grade classroom at the end of last year and into an instructional technology coaching role for this school year, I still reap the benefits of school closings.

Peep my decorating game
However, the icy conditions and blanket of snow represented more than just a day off to me. I was scheduled to have bloodwork, my next CT scan, and a phone call for the Crush It for Curtis Foundation Board of Directors all after school on Monday. Realizing that I could shift everything up to earlier in the day, I made a call to Dr. Maurer’s office and the medical imaging place to see if I could bump my appointments to earlier in the day.

Getting my medical tests done on Monday


Dr. Maurer’s office offered me a slot at 11:45 am, which I happily took. The medical imaging place couldn’t guarantee me an early slot, but advised me to just “show up and see if we can fit you in.” Quite the ballsy move - I approved.

Soon after I got off the phone with the imaging center, Dr. Maurer’s office called back. I was thinking they could offer me an even earlier slot, but instead they had some bad news. Dr. Maurer was not going to be in on Friday for my scheduled follow-up.

However, this bad news was headed off at the pass and they said they could give me an appointment on Tuesday. Not only was I able to get my medical tests done earlier on Monday, I wouldn’t have to wait four days for results. Talk about baller status.

I got my blood drawn at Dr. Maurer’s office (even earlier than I was supposed to be there, which may surprise some of my co-workers since I am habitually late to meetings) and showed up at the imaging place around 11:40 am. Luckily, barium for pre-scan prep has been eliminated, so I just needed to drink a bunch of water before my scan, and that’s fine by me. I checked in and the receptionist said they were having trouble finding my appointment.

“Yeah… I’m a little early,” I said.

“What time is your scheduled time?” she asked.

“Um… 5:45 pm. But the guy on the phone said I could just show up!”

Long story short, they were able to work me in. After getting an IV put in, requesting my traditional “CT scan pic,” following the directions from the CT machine about breathing protocols, and heading out, my medical tests were all done…. well before 12:30, which is around my normal lunch time. Diego, you’re the real MVP.

Not as good as June's pic, but still decent
As I drove to the gym for an earlier workout, I realized that I had not experienced any scanxiety in the lead up to this scan day. In fact, the only thing I had been stressed about before this day was that I was not going to be able to get to the gym, had these snow days not occurred. I suppose becoming accustomed to scans is all part of my “new normal.”

I got another call later that evening, which was far too many phone calls for one day, in my opinion. However, the message it brought was a welcome one - another snow day for Tuesday! Diego, you’re both the hero I needed and deserved. Don’t ever change.

Receiving the results on Tuesday


The next morning, I ate breakfast, headed to the gym, picked up my turkey to begin thawing for my annual “Friendsgivingmas” on Saturday, and drove to Dr. Maurer’s office. Soon after being seated in a room, he entered and told me that my scans were clear.

One set of lymph nodes is still on the higher side of normal size and one of my tumor markers were slightly elevated as compared to June’s scan, but on the whole, everything is looking great. Most importantly, my risk of recurrence drops significantly now that I have been in remission for about two years.

He asked how I was doing with the antidepressants and I said that they definitely were helping since the dosage was increased in January. I also told him about how I’ve been struggling with lingering effects of chemo brain, specifically short term memory problems and ability to focus.

Dr. Maurer shared that more research is being done into this phenomenon, but preliminary reports show that brain exercise programs, such as Lumosity or similar, can be helpful. However, my pun game remains strong, and that’s what really matters.

Two smiley selfies in one post...
A new record
I also got to see Nurse Jen, and later found out that it was her birthday, so here's another happy birthday message!

Reflecting on this scan and looking towards the future


In a month, I have another appointment for blood work to check on the aforementioned elevated tumor marker. Beyond that day, I will have a full panel of blood work in six months and won’t need another another scan until next December.

This is great news because I’ve been on six-month scan rotations since finishing chemo in January 2017. Since I’ll still be seeing Dr. Maurer for the next few years, he also said that he can more or less act as my GP doctor. That is one less, one less problem I need to worry about, as Ariana Grande puts it.

I will say that this scan was definitely the best of the six I’ve had since diagnosis. I had little to no scanxiety and just went along my day, business as usual. Usually, my anxiety peaks when I am driving to the office, but today it was a non issue, though this may have more to do with me being engrossed in Stephen King’s The Outsider audiobook. Having to wait only 24 hours for results versus a few days was definitely helpful, as was realizing that this might be the last scan for the next year.

The fact that this all transpired over two snow days didn’t hurt either. The only thing that could make it better would be a third day.

Come on, Diego…

Make my day.

Author's Note: About an hour after the original publishing time of this post, I got the call. He came through. 
Snow day, parte tres. Diego, wherever you are, you are a beautiful, beautiful soul.



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!



ABSOT is endorsed by the Laughter Arts and Sciences Foundation, a registered 501.c.3 charity. To make a tax-deductible contribution to help help continue ABSOT's work with testicular cancer awareness and men's health, click the image below.

Monday, December 3, 2018

PCL42: Bollocks and Bums

The Urology Foundation Releases Startling Figures on What British Men Know About Testicular and Prostate Cancer


Whether it’s CACTI’s study on men’s perceptions of testicular cancer, the Cleveland Clinic’s survey on the state of men’s health, or my own dive into understanding what how doctors perform and teach about testicular exams, I have developed quite the affinity for reading research studies and surveys about men’s health.

In early November, I came across a new men’s health study from The Urology Foundation, a UK-based charity that “leads the fight against urology disease.” While this study focused exclusively on British men, it was still eye opening. I reached out to them to get some more insights and to ask permission for me to repost their findings… and of course, I had to add my own ABSOT spin.

What do British men know about testicular cancer?

  • More than half of British adults do not know the age range when men are most likely to get testicular cancer
  • Half of British men have not checked their testicles for lumps in the last year 
Click to enlarge and download
Each time I read different studies and see numbers like this - I think two things. First, I realize just how important my mission truly is in this world. Second, I get fired up that someone dropped the ball on sharing such important information with men. If you don’t know to know to do these things, you aren’t going to do them. How can you know what you don’t know - you know? It’s up to doctors and patient advocates to band together to share this information widely.

For those men who didn’t know this information, 15-44 is the “high risk” age range, with over 50% of cases occurring in this age band. In the past year, you should have performed a self-exam once a month, for a total of twelve. If you’re not sure how, allow me to tell you (or click here if you’re more of a visual learner):

Best done during or after a shower when the scrotum is relaxed, a self exam is a quick and effective way to catch testicular cancer early on. Just place your index and middle fingers under the testicle with your thumb on top. Firmly but gently, roll the testicle between your fingers. Any weird lumps or bumps should be checked out by a doctor ASAP. When you get out of the shower, be sure to look for signs of changes in shape, color, or swelling.

What do British men know about prostate cancer?

  • 70% of British adults do not know the correct age from which men should be tested for prostate cancer
  • 2 in 3 British adults do not know what a prostate does
Click to enlarge and download
While I have a vague understanding of these matters, these were topics I admittedly needed to research to fully understand. According to the American Cancer Society, a prostate is a gland found only in males that makes some of the fluid that is part of semen. Prostate exams should begin at 50 years old for average males (and as early as 40 for the higher risk population).

I was correct in knowing that the prostate had something to do with the male reproductive system and that it’s generally screened later in life. However, I’m not sure that this is something I knew off hand before making my life’s work about men’s health. I also am assuming that even though I am citing American Cancer Society statistics, the same holds true across the pond.

Though prostate cancer is generally regarded as an “older man’s cancer,” any man with a prostate can develop it - the twisted mirror of testicular cancer being a young man’s disease. Either way, more men need to know this information so they know what to look out for.

To this end (pun very much intended), I commend a new fellow advocate friend, Gabe Canales, for committing to educate young men about prostate cancer (and how to lower risk from an early age) through his Blue Cure foundation. Stay tuned for a future Band of Ballers from Gabe!

How do urology diseases affect British men’s outlook on relationships compared to women?

  • 2.6% of women said they were often prevented from having sex because of urology disease, but that number jumps to 4.1% in men 
  • 15% of men say they’ve been prevented from pursuing a romantic relationship because of urology disease, but only 10% of women have
When I emailed TUF to ask for further information, they shared the above two statistics along with the following anecdote:
“I had a prostate cancer patient tell me that he’s heard other men say that they’d rather not know if they have prostate cancer because they’re worried what the cancer and subsequent treatment could mean for their sex life.”
This connects to what many of the themes, quotes, and anecdotes in Manhood: The Bare Reality encompassed. Men view their genitalia as an extension of their manhood and will literally choose to be kept in the dark so they don’t have to admit to problems in the bedroom… also in the dark. Unfortunately, this is a damaging, and possibly fatal, mistake that we must work to change.

What does The Urology Foundation plan to do to fix this?


Click to enlarge and download
Statistics are important, but more crucial is actionable steps. I asked TUF for their overall thoughts on this study:
“Unfortunately, getting men interested and engaged with their urological health has been an uphill battle for far too long. Urology disease for men often means problems with sexual function and once you start to get into that territory, a lot of men put off dealing with it, and it’s easy to understand why.”
“We need to work on educating men. The message is simple: the sooner you deal with a problem, the more chance you have of getting it fixed. If you notice something out of the ordinary for your body, whether it’s struggling to pee, peeing too often, a lump on your testes, or difficulty with erections, you need to see your doctor.”
It’s not just a fancy quote; they’re doing the hard work to raise awareness wherever and however they can.

They have Urology Health pages that provide information on a variety of diseases. Beyond their own site, they write articles that are aimed at getting men to take greater care of their health (including a post in the Huffington Post recently). Just as Ken Lane created #Takea2nd4theBoys, TUF set up #TUFnutsTuesday which encourages men to check their testes on the first Tuesday of every month and use our social media channels to share urology health information. They’re also working to get leaflets and slideshows into GP (general practitioners) waiting rooms.

As I was emailing back and forth with TUF (and often getting confused why their emails would come at like 3 am, before realizing time differences between North America and Europe are a thing), I realized that perhaps I need to take ABSOT’s mission more worldwide.

In looking at my audience analytics, United States visitors account for well over half of all viewers. I am based in America so this make sense, but men’s health is a worldwide issue. Furthermore, while I am focused mainly on testicular cancer, I need to make sure I’m also highlighting other men’s health conditions. We need to bring all nations of the world together to rally around this important message.

Only through collaborations between men’s health organizations and activists of both the Western and Eastern Hemispheres can we make sure men know how to take care of their own ‘hineys’ and spheres.



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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ABSOT is endorsed by the Laughter Arts and Sciences Foundation, a registered 501.c.3 charity. To make a tax-deductible contribution to help help continue ABSOT's work with testicular cancer awareness and men's health, click the image below.

Tuesday, November 20, 2018

PCL41: Two Years of Writing... and Still Only One Ball

A Look Back At The First Two Years Of Testicular Cancer Awareness and How It Has Changed My Life


In addition to November being No Shave November and the month I began chemotherapy in 2016, it’s also the month I began writing about my cancer journey. ABSOT was officially launched towards the end of the month and since then, I have published over 100 pieces here, in addition to about 120 other guest posts/interviews on other sites.

Last year around this time, I wrote about the story behind the creation and original intention of ABSOT. The first plan was to begin developing a comprehensive resource for someone facing testicular cancer, as it was something I could not easily find when I was initially diagnosed. Since the active treatment part of my testicular cancer journey wrapped up almost two years ago, I haven’t added new pieces in this regard.

One recent email
However, I do frequently receive emails from new patients who find my blog. It’s nice to see that the resource I wish I had is helping others and I can point them to one of my posts about what to expect in their coming journey, whether they’re wondering if they should bank sperm for the future, how hair loss will go, or if nausea ever proves to be an issue.

Despite not having an active testicular cancer experience to write about, I still continue to publish pieces frequently


These pieces are generally focused on two of the other goals of ABSOT - sharing an honest look about what it means to be a cancer survivor and broadening lines of dialogues about men’s health as a whole. These are two vital parts of my post-cancer life (so much so that the current series on ABSOT is literally called “Post-Cancer Life” and form the bulk of my writing these days).

The Band of Ballers class of 2018
Beyond the PCL series, I have also opened up ABSOT to share the voice of others through the Band of Ballers series. This series was launched in April 2018 and features other testicular cancer patients, survivors, and advocates who have grabbed their life by the ball(s) to spread awareness about this disease. I get to play more of an editor/producer role in these pieces and it is completely awe-inspiring to see other men sack up to share their stories so openly in hopes of destigmatizing men’s health.

In the future, I hope to continue this series and bring in advocates for other men’s health conditions, such as when John Falk shared his story with male breast cancer. At the end of the day, I’m still just one man, with one testicle, and one blog, but by giving a platform to other men to share their health journeys, we can get the ball rolling on changing this narrative.

In addition to writing on ABSOT, I became a regular contributor to CURE Voices in March 2018


CURE is the largest publication for patients, survivors and caregivers in the US. Knowing this, I was honored when they reached out to bring me on board. Perhaps my favorite thing about having CURE as an additional place to write is that I can keep ABSOT’s focus on men’s health and post more generalized cancer pieces on CURE. The community on the CURE Voices forums truly “get” what I’m saying in these pieces, so it’s great to have another place to share my random rambling thoughts.

While the first few posts on CURE were remixed versions of my original journey and posts from ABSOT, I also regularly produce exclusive pieces that do not appear here. Since I did a top twelve list last year of my favorite ABSOT posts, I felt it was just as important to do one this year for CURE, since they have become such an integral part of my writing process. The list is presented in descending order.

Cartoon Justin smiles

Honorable mentions:

  1. Conquering the Spartan Sprint After Cancer - About a month before my diagnosis in 2016, I “ran” (read: walked) the Spartan Sprint. Just a few weeks ago, I did significantly better.
  2. What Cancer Survivor Day Means to a Testicular Cancer Survivor - June 3, 2018 was Cancer Survivor Day. This is what it means to me.
  3. Another Spring, Another Worry, Another 'Balltrasound' - Fears of recurrence is a constant struggle. However, I’m learning to handle it better.
  4. But First... Let Me Take a Cancer Selfie - Beyond the blog, social media is how I raise awareness. 
  5. The Dark Side of Cancer and Social Media - As a continuation of above, this is what I see as a troubling misuse of social media in the cancer community.
  6. Pulling the Cancer Card - It’s a powerful way to get what you want, but when is too far?
  7. Why October Scares Me - October is diagnosis month for me. Sometimes, thinking back on it is more terrifying than any Halloween movie.
  8. Chemo Brain Returns? - Chemo brain (discussed more in depth in this feature I did for CURE Today) is a real thing, and sometimes I wonder if it’s truly gone.
  9. How Cancer Has Taught Me to Just Say No - It may sound selfish, but after facing cancer, I spend more time saying no to things that just don’t appeal to me.
  10. ‘I'm Not an Inspiration,' Says a Testicular Cancer Survivor - Of all the words that have been used to describe me, inspiration is among my least favorite.

Since this is my second year of writing, I figure I’d double up and continue with two lists… even though I no longer have two testicles


Without further ado, I present the second annual top ten ABSOT posts of 2017-2018, again in descending order. *Please note I chose to put both lists in descending order because an undescended testicle is a factor for an elevated risk for testicular cancer.

Honorable Mention:
  1. My Definition of Surviving - One Year Later - What surviving cancer truly means to me, as I reflect on one year of remission
  2. Looking for Clarity - A piece where I open up about my mental health journey with depression, post cancer
  3. Progress with Prozac - A continuation of the piece above, detailing how antidepressants helped me overcome depression after cancer 
  4. A Ballsy Challenge - Five easy ways to make the most of Testicular Cancer Awareness Month and beyond
  5. A Research Study By CACTI - My analysis of the spring 2018 CACTI study about men’s perceptions of testicular cancer 
  6. Every Man Needs a Urologist - An eye-opening interview with Dr. Modlin, of the Cleveland Clinic about their third annual MENtion It survey
  7. What's the Deal With Testicular Exams at the Doctors? A Research Study - An investigation I did about testicular exams at doctors office. Not to spoil it, but about 78% of men reported that they weren’t taught how to do a self-exam
  8. Making Testicular Self-Exams Standard Practice in Virginia's High Schools - The achievement I am most proud of with my awareness work - the creation of a PSA for high school students 
  9. An Open Letter to Tim Howard and Cremo - My response to Tim Howard and Cremo Company misusing the No Shave November hashtag to promote their products instead of men’s health
  10. Eight Reasons Why One Ball is Better Than Two - This post dives deep into the advantages of having only one testicle and is a peak-ABSOT post, blending humor and education AKA my new favorite pair

On a personal level, writing is my therapy after facing testicular cancer


I’ve touched on this in last year’s post, but I can never understate the importance of finding an outlet for dealing with cancer. For me, I have a hard time verbally speaking my feelings out loud. I can never seem to find the spoken words to reflect what I am trying to say, but I don’t have any problem writing them out. When I am feeling down, I write. When I am feeling proud, I write. It gives me an outlet and helps me process.

By having written so much over the past two years, I have a more or less complete record of my life and how far I’ve come. Every few months, I go back to reread the pieces to really reflect on what an incredible journey I’ve been on since October 2016. I don’t have any plans to stop, as this is a passion that truly brings me joy and helps me finding purpose and meaning in life.

Here’s to having a ball as we begin looking forward to a great third year of writing about balls.




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!



ABSOT is endorsed by the Laughter Arts and Sciences Foundation, a registered 501.c.3 charity. To make a tax-deductible contribution to help help continue ABSOT's work with testicular cancer awareness and men's health, click the image below.

Monday, November 12, 2018

PCL40: From Traditional to Transformative - Manhood: The Bare Reality

“Feminism has helped women to re-interpret womanhood and break down feminine stereotypes. I don’t feel this has happened enough for men.” -- Laura Dodsworth in Manhood: The Bare Reality

“Breasts and penises are not direct counterparts but both embody ideas of femininity and masculinity, womanhood and manhood, and offer intimate windows into our emotional and psychological worlds.”
Thus opens Manhood: The Bare Reality by Laura Dodsworth. This book is a sequel of sorts to The Bare Reality, the original book in the series where 100 women had their breasts photographed and shared what it meant to them to be a woman. In this edition, penises took the stage as men shared their stories of what manhood meant to them (including Band of Ballers alumni Matt Wakefield).


In why they sacked up, stripped down, and answered the call of duty, two men had this to say:
"If women are going to stand there and expose themselves in that open way, then to be one of the men who is willing to do that is a really positive thing."
""Penises are so linked to our psyche. Language says it all, we call a penis our 'manhood.'"
As I read the book, I saw many interesting things, and I’m not even referring to the multitude of penises (there is also a strong narrative of what word to use when referring to the penis as throughout the book; I settled for the anatomical term in this piece).

Throughout the 300 pages, major themes arose about the concept of manhood and masculinity. These themes mainly revolved around the differences between “traditional manhood” and “transformational manhood” - not terms used in the book, but I like alliteration so that’s what we’re going with.

These selected quotes (in italics and used with permission of publisher) were moments that made me think about my own experiences growing up as a boy, adolescent, and man and how we can shape the future of our sex.

The concept of “traditional manhood”

"We're taught that men must work hard, provide, be the breadwinner, be strong emotionally and physically, and that's it really." 
"The classic social pressures mean that it can feel very shameful for a boy to... be perceived as weak." 
“Masculinity says you don't talk about stuff."
These and many similar quotes were woven throughout the book. Throughout history, men were supposed to keep their emotions in and just provide for the family. This narrative must change. Not belabor the point, but I’m calling this viewpoint of manhood “traditional” for a reason.

How “traditional manhood” impacted men’s health

"As a small child, you were told, 'Big boys don't cry.' I think this is why men sometimes have a higher incidence of some of the serious illnesses because we don't like to complain about being ill."
"The conventional wisdom is that men don't like to talk about things, and that they are suffering and even dying because they don't talk about this part of their body."
As this is a driving force and predominant theme behind the mission of ABSOT, these lines aren’t new information. Nor are these notions just the musings of random men. The MENtion It survey from the Cleveland Clinic has consistently shown over the past three years that men just choose not to open up about their health.

However, what is most revealing about these quotes delves into why men might keep things close to their chest. Personally, I know I heard time and time again while growing up that “big boys don’t cry” and because of that stereotype, I was very reluctant to call my doctor when I discovered a lump during my monthly self-exam. We need to open up lines of communication to dispel any sort of shame or stigma attached to freely discussing men’s health.

Here are a variety of ways to talk about men’s health in a natural manner, ranging from using current events to witty remarks to simply grabbing the conversation by the ball and being blunt about this crucial topic.

How “traditional men” interact with other “traditional men”

"I can't talk to any of my male friends about anything meaningful emotionally or psychologically.”
"My men friends and I don't have the sort of friendships where we talk about personal things. I never really knew how to make it different"
Prior to cancer, the majority of dialogue with my close male friends included random bantering, ‘roasting’ each other, and discussing movies, but nothing of real substance. I think this really aligns with what “traditional manhood” is all about - keeping deep thoughts and feeling to yourself. Since my experiences with testicular cancer, many of my conversations with my friends have delved into more serious topics, including taking care of their health and taking a real look at the future.

The second quote in this section bemoans that that guy didn’t know how to make it different. In my opinion, he’s halfway there. Recognizing that a disparity exists is the first step, and it must be followed by concrete action steps to fix this. Be that guy to take the first step and ask about personal things with your buddies. Eventually, it will feel less awkward.

Transitioning from “traditional manhood” to “transformational manhood”

"As men, we are told to be have a cool, calm exterior, never cry, brush things off. But you need to have emotion."
"I think as a boy growing up, to be a man was to be strong, to be hard, to not cry. And then I was told that wasn't OK, that I should be softer."
"The old way of bringing up boys, whereby you are not really supposed to express feelings much, ends up with men doing odd things, and those energies can come out in other ways which are unhealthy. Talking and expression are a big part of healing."
"When I was younger, I thought being a man was about being buff. Now it's about being a good person and giving to society"
I’m not going to weigh in too much on these quotes since they do an excellent job of speaking for themselves. While my commentary is absent, I made it a point to include them here to show that many many are aware of the dichotomy of being raised in the “traditional manhood” eras as we enter into the “transformational manhood” time.

The concept of “transformational manhood”

"Being a man means being loving, kind, compassionate, being there for your friends and loved ones"
"I feel that when men come together and talk we can integrate our emotions and then be true in our actions."
This is the heart and soul of the book. While there were a few quotes that reinforces “traditional manhood” concepts, they were shared by men who had their penises photographed a few minutes earlier and were sharing some of their deepest and darkest moments in their lives. (As I was typing this, I really had to wonder - were the interviews taped while they were still naked or did they get dressed first?)

We need to talk more - not about sports and women and stereotypical “guy things,” but about what really drives us as people. Topics like our physical and mental health, our worries and insecurities, our hopes and dream, and our overall emotions should become commonplace.

I’m stealing a challenge from my friend, Dave Fuehrer: “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.” No matter if you’re talking to your male buddy, your wife, or a mashed up dead tree, it’s the first step in being a “transformational” man.
"My boy is very in touch with how he feels and I encourage that. I think it's important that as fathers we step up. At the moment, in the collective... there's more discussion about self-development."
While I don’t have children of my own, this quote still resonates strongly. It’s showing that not only is this father recognizing the value of “transformational manhood,” he’s working on instilling and encouraging it in his own son. In that boy’s life, he may see the end of “traditional manhood” as we know it. He may even be able to answer my final question as I closed out the book...

Should we even be asking what a man is?

"What being a man means is becoming quite blurred"
"I don't like to think about what being a man means. We're not just men and women. We're human."
In writing a men’s health blog, I always try to be careful to not act like men have been systematically oppressed. Every ABSOT post runs through a review process by my Editor-in-Chief, Katie, and we’ve had numerous conversations about making sure that I’m keeping my eye on the ball with regards to the overall scope of society in regards to men and privilege. While I do get very passionate about men’s health, the truth is that men have done much of this damage to themselves by perpetuating harmful stereotypes and narratives.

Since the US election of 2016, which literally coincided with the day I was told my cancer had spread, there has been an inspiring movement of female empowerment between the #MeToo movement and more.

This isn’t to say we need a ‘manism’ movement, which is even echoed in this quote:
"I don't think feminism should rewind, but there needs to be a way for men to say it's hard for us, that we hurt. [But] that should take place away from feminism"
We can celebrate the differences without placing one sex above the other. Respecting differences and promoting equality for all gender identifications is important, especially in today’s world. It’s truly the only way we can progress as a human society. It’s ok for men to have feelings and share them, and it is ok for women to stand up for what they believe in when something isn’t right. At the end of the day, as the above quoted man said, we’re all human; we shouldn’t assign certain ‘tasks’ to certain genders.

We know “traditional manhood” is broken. “Transformational manhood” is in a step in the right direction, but we should continue moving closer to just “humanhood.” In closing, I feel this final quote really drove home the overall message of where we need to go from here:
"It's divisive to have all these projections about what men and women do. None of it's helpful. We have to just experience each other in the moment."

*A big thank you to the author and publisher of this book for sending me a copy of this book to review. All opinions expressed are my own and I was not compensated (beyond saving on the cost of this book) for this review. I highly encourage you to check it out. Even though you may be uncomfortable with the idea of looking at 100 penises in a row, the stories are compelling and you’ll find yourself seeing beyond the pictures to get to the real meat of the book*



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!



ABSOT is endorsed by the Laughter Arts and Sciences Foundation, a registered 501.c.3 charity. To make a tax-deductible contribution to help help continue ABSOT's work with testicular cancer awareness and men's health, click the image below.