Thursday, December 20, 2018

BOB10: Mike Craycraft - The Testicular Cancer Society

Mike Craycraft Founded the Testicular Cancer Society to Help Raise Awareness and Improve Care for Testicular Cancer

Welcome to the Band of Ballers! In this series on ABSOT, I’m turning over control to some other ballsy testicular cancer survivors and patients who have inspired me with their work in advocacy and awareness during and after their diagnosis. This month’s feature is all about Mike Craycraft, who founded the Testicular Cancer Society. Enjoy!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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, December 11, 2018

PCL43: There's Snow News Like Good News

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

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

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

Getting my medical tests done on Monday

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

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

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

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

“Yeah… I’m a little early,” I said.

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

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

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

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

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

Receiving the results on Tuesday

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

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

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

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

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

Reflecting on this scan and looking towards the future

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

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

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

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

Come on, Diego…

Make my day.

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

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

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

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

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

Monday, December 3, 2018

PCL42: Bollocks and Bums

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

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

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

What do British men know about testicular cancer?

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

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

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

What do British men know about prostate cancer?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.