Saturday, October 20, 2018

BOB08.5: John Falk - "Men Get Breast Cancer, Too!"

John Falk Shares His Experience and Mission as a Two-Time Male Breast Cancer Survivor 



Welcome to the Band of Ballers! While this series on ABSOT usually features other ballsy testicular cancer survivors and patients, this is an extra special edition featuring a two-time male breast cancer survivor.

October is Breast Cancer Awareness Month, and what better way to raise awareness in our men’s health community than from a male breast cancer survivor, John Falk. I guess technically he is a Band of Boober, but he’s a member of the Band of Ballers in my book.


One day in 2013 I noticed my left breast was swelled up. It did not look right at all. The breast itself felt uncomfortable. It had a ticklish feeling and it really made me wonder what was going on. I went to the doctor to get it checked out.

John and his wife and two awesome shirts
After my first consultation my tests were negative. It was a year later when I felt the lump. I caught it so early that it was frozen in place and did not move. I had a full mastectomy. No lymph nodes taken. No chemo or hair loss. No medication. It was a surgery and I was done. I didn’t want to have the ribbons. I didn’t want to wear the banner because I didn’t go through wrenching treatments battling my cancer.

Two years later, I found another lump and my male breast cancer was back


The second time around the doctor said it was invasive. I was thunderstruck. I realized that I am a cancer survivor. I had a mammogram, a biopsy, and a pet scan. After my surgeries, I had 30 radiation treatments and I am on a 5 year regimen of Tamoxifen. I also had genetic testing that shows I do not carry the breast cancer gene mutation.

Now, I am 2 years in remission. I had radiation pneumonia and I have some resulting issues such as coughing and shortness of breath but at age 60, overall, I am doing great.

However, my experience with the first doctor I saw was not great


When I came into his office, in a matter-of-fact voice, he asked me, “Why did your doctor send you to me?” It came off as cold and unconcerned, as though I had interrupted his day. He examined my breast. He stated “It’s breast tissue. Men have breast tissue.” Then he said, “I guess I’ll have to order some tests.”

I did switch to a different doctor right away. The biopsy was no fun. The device made a sound like a staple gun while withdrawing the tissue. The mammogram was interesting. I was a 50 something guy who doesn’t work out at the gym so there wasn’t much to work with. But believe me... they can definitely do mammograms on men. I felt no embarrassment or shame at having to be in an office with only women; I actually felt special. I was the only man there and I had a procedure that mostly women get but not many men do.

The day my wife sat me down to tell me the result I did not cry. I was not hysterical. I kept myself together for my wife’s sake and she did not cry. She wanted to but only because she was sad I had to go through this. But I was strong. The surgery was easy. The woke up with a drain tube wondering when I am going to feel pain from the surgery which never happened

From the moment I discovered my swollen breast tissue to the last radiation treatment I was not scared. I never was depressed. I never said, “Why me?” I did not will it away but I was so sure I had caught it early I was certain the outcome would be good.

After my two experiences with male breast cancer, I’ve made an effort to educate men about this disease


I have joined a Facebook page for “The Male Breast Cancer Coalition.” It includes stories of men and them dealing with breast cancer. It is terrific organization. They sent me a men’s breast cancer T-shirt. I wear it every day and switch off with a shirt I had made with my own mantra, “Breast Cancer - Men Get It Too.”

John post-mastectomy 
I was sent stickers that are imprinted “Men Get Breast Cancer.” It sounds crazy but I have taped them to public urinals at every store that I shopped at. I wear my t-shirts and push them in people’s faces and tell them I am a two time breast cancer survivor. I talk to people I see when I’m out and about. I’m don’t think I am annoying; I like to think I am passionate. I tell everyone guys check yourself and to the women be sure the men in your life do the same. I told my story on my Facebook. I don’t usually do personal things, but I did this.

The funny moments in handling male breast cancer for me started when I returned to work and my friend said, “I heard you lost a moob. How are you doing?” From that point forward it was easier to see the humor in it. After a full mastectomy, I told my my friends, “Summer’s coming and I’ll be out on the beach. My shirt WILL be off. See you there!”

Another funny moment was a guy at work posting pictures of his knee surgery staples. I said, “If you can do that, then here’s my scar.” I posted a selfie of me with my radiated nonexistent breast and a screwed up pained expression. I killed it.

Men need to know that they can get breast cancer


Every man needs to check themselves frequently as we should our testicles against testicular cancer.

How to do a Male Breast Self-Exam (via verywellhealth.com

1. Run a warm shower or bath. Use soap or bath gel to create a soapy, slippery layer over your breast area. Well-soaped skin will be easier to examine, as it allows your fingers to slide along your skin without rubbing. 
2. Raise your left arm over your head, and if possible, put your left hand on the back of your head. On your right hand, put your index finger, middle finger, and ring finger together as a group. You will use these three fingers to check your left breast. Check the texture of your left breast by starting at the outer edge. Place your three fingers flat onto your skin, press down and move in small circles. Repeat this all around your breast. Don't rush. 
3. Check your nipple by gently squeezing it between your index and ring fingers. Look for any discharge, puckering, or retraction (pulling inward). 
4. Check the other breast. 
5. Rinse yourself off and dry with a towel. Stand before a mirror which is large enough for you to see both breasts. Take note of any asymmetry and skin changes (rash, puckers, dimples).

Check yourself on a regular basis for any lumps. You don’t want to be the 1 of 2500 guys who will be diagnosed. Get your physical every year. If you feel a lump or something not right don’t ignore it. Go to the doctor. There is no shame in having breast cancer. It’s not a woman’s disease. It’s a human disease.

As a man with male breast cancer, I’m driven to make others comfortable with me as a person with cancer


No one wants to talk about it. On my Facebook page I told everyone. If you want to ask me what my cancer, please do. I will try not to bore the heck out of you. If you don’t want to ask that’s okay too. Don’t be uncomfortable around me. I’m still the same guy as I have always been.

Shirt game so strong
People need to know it’s ok to talk about cancer. It’s tough. When I discovered my cancer was positive, I called my job, where I had worked 22 1/2 years as a correctional officer. I told my Sergeant that I have breast cancer and I am having surgery. I told him to tell my coworkers I had cancer and I would be back. I wanted him to announce it in roll call so they would know so they wouldn’t worry or wonder.

Men are afraid of sharing feelings or talking about them for the most part. There is stigma attached to illness mental or certainly men's breast cancer. All I have read of male breast cancer stories is the shame and embarrassment they felt. Many of them had an obvious symptom that was ignored. Mine is a different take because I caught it extremely early. I had symptoms and I got it taken care of.

In a decade, I believe our awareness of male breast cancer and men’s health will be tenfold or more from where it is now because of folks like Brett Miller of The Male Breast Cancer Coalition, your work with A Ballsy Sense of Tumor, and me, taping stickers in men’s rooms, wearing my shirts, and telling everyone wherever I go.

But my real wish is for men's breast cancer being spoken about in lockstep with women’s breast cancer. I want the American Cancer Society to recognize it equally and in the same breath as women’s breast cancer.




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!

Sunday, October 14, 2018

BOB08: Nancy Balin - The Family Jewels Foundation

Nancy Balin Raises Testicular Cancer Awareness Through Her 'Family Jewels Foundation' in Memory of Her Stepson, Jaimeson Jones 

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 is a special edition, featuring the the first female member of the Band of Ballers, Nancy Balin. She founded the Family Jewels Foundation in honor of her stepson. Enjoy!

My journey as a passionate testicular cancer educator started on January 15, 2005, when my stepson Jaimeson Jones was diagnosed with late stage, poor prognosis testicular cancer at age 14.

Nancy and Jaimeson in his junior/senior
year of high school
He had had symptoms of pain and swelling in his testicles for upwards of a year, but he was “too embarrassed to tell mom.” We had his course of treatment managed by Dr. Einhorn at Indiana University – Purdue University Indianapolis. He went through four cycles of BEP chemotherapy in Seattle and then multiple life-threatening surgeries in Indianapolis, including an RPLND (Retroperitoneal Lymph Node Dissection - a surgery to remove affected lymph nodes). Thankfully, he was declared in remission by age 15.

Over two years passed, and he had not had a testicular cancer recurrence.


Due to this, his surveilling oncologist (not Dr. Einhorn) began saying, “If it hasn’t come back by now, it won’t.” The doctor was so convinced of this that he actually missed the recurrence when it happened, after 4 ½ years of remission when Jaimeson was 19. When we saw some college pictures of Jaimeson, we knew he didn’t look right. It turned out that one of his markers had risen into the 80s. He went through four cycles of BEP again, high-dose chemotherapy with stem cell rescue, and multiple additional surgeries. But this time we couldn’t beat it, and Jaimeson died on October 7, 2010 at age 20.

It's a well known fact that many Uniballers are
former/current runners
When he knew that he was dying, Jaimeson asked us to give his college savings to his two younger sisters for their schooling. His request inspired me to endow a scholarship in his memory at his college, Washington State University. This scholarship was to be awarded to a student who had had a sibling with cancer. Almost as soon as the papers were signed, we had our first scholar! Since then, we also have endowed a scholarship in Bothell, Washington, where we are from, and currently we are helping put three local students (who have had a sibling with cancer) through college.

As the years have passed, I have become even more “ball(s) to the wall” with testicular cancer awareness.


I am very active in teaching boys and young men about the symptoms of testicular cancer and the importance of both monthly self-exams and medical provider testicular examinations. Although Jaimeson had a sports physical seven months before his initial diagnosis, the family practitioner he had been seeing for years did not perform a testicular examination. (Editor’s Note: Sadly, the study I ran found this to be common. When I talked to the Cleveland Clinic about possibilities of why, they said that doctors are just asked to do too much nowadays.)

Given that one of Jaimeson’s cancer types was non-seminoma, which doubles in size every 10-30 days, that massive oversight and the resulting loss of seven months of diagnosis and treatment time has haunted me ever since.

Now, I find myself “talking testicles” all the time. 


My heartfelt motto is “I couldn’t save my own boy, so I’m trying to save yours.” Whether it’s the Boy Scouts, various Chambers of Commerce, retired folks (Don’t forget, they have grandsons and nephews and sons and sons-in-law), Rotary clubs, local employers, school health classes (still working on that), or anywhere else that boys and young men (and their families) gather, I lead the charge for helping young men to learn about testicular cancer.

I'd like to make a reservation for one
(to clarify - I mean one testicle, not one person)
I bring Nut Notes (“Check Your ‘Nads, Lads!”, “Too Chicken to Check Your Nuggets?”, “Swelling is Telling!”, and more), Nut Sacks (bagged peanuts), informational brochures, self-check-reminder shower cards, and my tongue-in-cheek humor and driving passion to keep other families from going through what my family experiences every single day.

Ever seen a Nut Hut? I take this mobile self-check station on the road to many of my talks and fundraising events, and the Family Jewels Foundation (the charity I founded) recently won “Most Imaginative” for our float, featuring the Nut Hut, pairs of balloons and blown-up rubber gloves (get it?) in a popular local summer parade.

I also have developed two annual events to help this mission. Every March on the second Saturday (Jaimeson's birthday is March 14), I put on the Family Jewels Pie-K, so named because of Jaimeson's Pi(e) Day birthday and the fact that we are the #only5Kwithapietable. On March 9, 2019, we will put on our 9th annual event.

A newer event is coming up fast on November 10, when I will put on the Family Jewels Kenmore Ball Crawl. At this fun, family-friendly event, three local craft breweries donate taster trays of their brews, and people receive testicular cancer info, “Nut Sacks,” and other swag in their swag bags.

Because of Jaimeson’s needless and tragic death, I am absolutely compelled to educate about testicular cancer.


This disease essentially was cured 15 years before my boy was born. I am so driven, in fact, that I left the government-lawyer career I loved in order to talk testicles full-time. There is a glaring gap in education about testicular cancer. It doesn’t have national prominence or its own “Pinktober” like breast cancer awareness does, and this omission is further exacerbated by young men’s sense of invincibility and their embarrassment about these sensitive body parts. Most of my Nut Notes are funny, but there is one that isn’t: “Don’t Be Embarrassed to Death.”

Be sure to check out the Family Jewels Foundation...
and check out your family jewels!
What can young males do to take charge of their own health? Make sure you have a medical provider do a testicle exam annually. Check your own testicles every month, and see a urologist right away if they hurt, have lumps or bumps or have either shrunk or grown since the last time you checked them. Most importantly, please don’t wait! People who love you are counting on you to take care of yourself, and this includes making sure your testicles are healthy, too.

Remember, “Smooth and Round is Healthy and Sound!”

Be sure to connect with Nancy Balin by visiting her at WWW.FAMILY-JEWELS.ORG; https://www.facebook.com/FamilyJewelsFoundation; https://twitter.com/FamilyJewelsFdn; https://www.instagram.com/familyjewelsfoundation; SavingGuysLives@gmail.com. Until next time, Carpe Scrotiem!



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!

Wednesday, September 26, 2018

PCL38: Every Man Needs a Urologist

A Conversation with Dr. Charles Modlin of the Cleveland Clinic about the MENtion It Survey 



As legend has it, ABSOT originally began as a guide for newly-diagnosed testicular cancer patients - the resource I wish I had had when I first heard the words, “You have cancer.” However, the mission changed into educating the general public about the importance of discussing men’s health when I found the 2016 MENtion It survey done by the Cleveland Clinic. This was one of the first surveys that showed clearly that men don’t always necessarily take their health seriously, and I incorporated into one of the first pieces on ABSOT about my reluctance to call a doctor.

Since then, I’ve referenced those stats multiple times in my writing and awareness work but never had personal contact with the Clinic. A few weeks ago, I was pleasantly surprised to see the results of the 2018 MENtion It survey land in my Gmail inbox. Now in its third year, the theme of this year’s survey is analyzing how men’s health is influenced by female spouses.

The email also mentioned an opportunity to speak one-on-one with Dr. Charles Modlin, a urologist at the Cleveland Clinic and the founder/director of Cleveland Clinic's Minority Men's Health Center. I eagerly accepted the offer, which led to the following fantastic conversation.

Discussing how the the Cleveland Clinic came to be a pioneer in men’s health with the MENtion It campaign


Click to enlarge and share
One of the first things I asked Dr. Modlin was why the Cleveland Clinic started this push for men’s health. A few years ago, the Department of Urology in the Cleveland Clinic noticed that men historically “have, in many respects, shunned doctors, and a lot of times they don't want to go to the doctors. They ignore signs and symptoms of certain diseases they may have. As long as they're able to get up, go to work, and aren’t in severe pain, they'll just say, ‘There's nothing wrong. I don't need to go.’”

Dr. Modlin postulated why this may have occurred: “A lot of men were taught to be stoic, to be macho, to grin and bear it, to just deal with and ignore pain, [whereas] women have been educated at earlier ages that if they sense there's something wrong with their health or their bodies to go get it checked out.”

Realizing all of these factors, the Cleveland Clinic started the MENtion It campaign in 2016 to do more to encourage men to take better care of themselves.

Discussing differences between 2016 and 2018 MENtion It surveys


The 2016 MENtion It survey found that 53% of men don't talk about their health, and in 2018, that had slightly increased to 56% of men preferring to keep health concerns to themselves. 2016’s survey showed that 40% don’t attend their yearly physical, while the 2018 edition said that 61% of men have neglected visiting a doctor even when they needed to go. In this year’s study, it was also reported that 83% of women said they encourage their spouse/significant other to get their health checked once a year, but 30% of men believe that they don’t need to go because they are “healthy.”

I asked Dr. Modlin about his opinion on why these stats don’t seem to be improving. He said, “he fact of the matter is, it still suggests that over half of men are reluctant to speak to others about their health concerns, to speak to each other about their health concerns, [and] to admit that they even need to get checked out, even if they do have signs or symptoms.”

Comparing the results of the 2018 MENtion It survey to other testicular cancer studies


Click to enlarge and share
On a good note, the 2018 MENtion It survey also mentioned that 59% of men would see a doctor promptly for changes in their testicles and 49% of men would see a doctor immediately for testicular pain. However, the majority of men aren't actively looking for these problems. The survey found that only 41% of men under the age of 35 regularly do testicular self-exams. This aligns with findings from the CACTI study from earlier in 2018 (more than 1 in 3 of all men polled have never been told about the importance of a monthly testicular self-exam) and a 2016 study by the Testicular Cancer Society (only 42% of men know how to do a self-exam).

When asked for his reaction to these studies, Dr. Modlin stated that he was surprised that the statistics were that high and would have assumed that they were lower. I also shared the study ABSOT ran that found that 78% of men weren’t taught how to do a self-exam at their most recent physical, and asked why the ball has been dropped on this particular information.

“Medicine is changing and in a certain way that is actually putting more pressure on primary care providers to do more during their encounters with the patients in a shorter amount of time. They're trying to manage the diabetes, the hypertension, high cholesterol, heart disease, stroke prevention,weight management, behavioral health, the medications and all that kind of stuff… in a 15 to 20 minute interaction that is allotted to them. It [also] requires that doctors spend more time doing documentation and it's taken away time from the face to face encounter interaction between doctor and patient.”

As a public school teacher, this made total sense to me. Just like I’ve felt pressure to do more with less, doctors are feeling many of the same stressors. In either case - this isn’t an excuse; it’s simply the reality of our society.

Identifying a problem in men's health awareness is important, but working to a solution is critical


ABSOT’s mission isn’t just to bemoan the state of men’s health - it’s to improve the care and attention it receives. I asked Dr. Modlin how healthcare professionals and health activists can work together to right this course. He suggested a three-pronged approach.

1. Every man needs a urologist:


I used to joke that I was 25 and had a urologist, but Dr. Modlin said this should be the norm, not the exception. He didn’t mean that urologists should replace primary care physicians; they should augment care. The primary care physician can focus on the aforementioned general issues and allow the urologist to focus on men’s health issues, similar to how gynecologists work in tandem with women’s doctors on their specific needs.

For this to be successful, two things need to happen. We must begin educating people that men need to start seeing a urologist far before the traditional 40’s/50’s timeframe. Dr. Modlin said as early as 15 (the same age in which testicular cancer begins to become more common) wouldn’t be a bad idea.

Click to enlarge and share
In addition, the digital age of medical records has definitely helped put collaboration between primary care physicians and radiologists on the right path. Dr. Modlin said that e-consultations and phone calls between the medical professionals are common, but it’s also important for doctors to physically refer patients to specialists.

2. Help men prioritize their health:


On the Titanic, it was women and children first, and men - if there was room. Dr. Modlin mused that this attitude had been adopted throughout society, and though putting others first is kind, it can be deadly when it comes to personal health. Without being politically incorrect, according to him, “historically the men were the ones that went off to war. It was the belief that men were expendable.” This notion that men were expected to endure danger contributes to modern feelings towards personal health.

While healthcare is a personal responsibility, and men need to start prioritizing it, we also need to place more emphasis on men’s health as a society as a whole.

3. Go where the men are:


I always find it ironic that my analytics on ABSOT and Instagram show that my viewership is primarily women. While it must be my endless charisma, my roguish good looks, and the allure of what a man with one testicle must be like, sadly, they’re not my target audience. This isn’t surprising however, since the major users of most social media are women (with YouTube being a notable exception).

We need men talking with men about men’s health where men are hanging out with other men - places like work, barbershops, gyms, bars, and places where sportsing happens. If you look at the world through my eyeballs, you’d be amazed how many opportunities for talking about balls and other men’s health issues present themselves in these areas.

According to the 2017 American Time Use Survey, men spend more time than women do working, exercising, and watching television. While the above mentioned ideas cover the work and exercise components, a push for national media coverage would help reach the men who watch TV or stream online.

Dr. Modlin and I agreed that there needs to be a collaboration between healthcare professionals and men’s health activists to make this work. My voice alone (as someone who is seemingly obsessed with testicles) doesn’t carry much weight by itself, just as a medical facility’s message can be augmented with a “Regular Joe Everyone” voice.

Let’s join together to grab this mission by the balls and make it into a reality.




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, 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!


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, 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

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

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 a Winner in the WEGO Health Awards

A Ballsy Sense of Tumor Has Been Nominated Won for Hilarious Patient Leader 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: Endorsements closed in August 2018, but read to the end of this post for an exciting update)

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.

OCTOBER 2018 UPDATE  


I ended up being a finalist in the Hilarious Patient Leader category, because let’s be honest, I am incredibly funny. I’m also very humble, but mostly funny. I mean, I laugh at all my own jokes.


As you may have guessed from the above video, I ended up winning the category and got to travel to Boston to the Connected Health Conference in mid-October to network and accept my award. It was a whirlwind of an adventure, with many laughs, connections, and opportunities for networking. Hopefully, this helps elevate the work of ABSOT to more prominence. 

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


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, July 5, 2018

PCL34: A Research Study By CACTI

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

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

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

What do men know about testicular self-exams?

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

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

What we can do to change this?

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

What do men know about testicular cancer causes and detection?

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

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

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

What we can do to change this?

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

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

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

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

What we can do to change this?

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



A self exam is how most cases of testicular cancer are detected early. Click the image for video directions or click here for a larger version


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


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!