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

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

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.

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!

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, 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!

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, 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!

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.