Recently I have been working with Justin Birckbichler who is based in America. Justin is a fourth grade teacher, men’s health activist, testicular cancer survivor, and the founder of aBallsySenseofTumor.com. From being diagnosed in November 2016 at the age of 25, to finishing chemo in January 2017, to being cleared in remission in March, he has been passionate about sharing his story to spread awareness and promote open conversation about men’s health.
Recently, he was kind enough to answer some questions about his testicular cancer journey.
Let’s talk about your cancer journey – when did you first realise something wasn’t quite right? What treatment did you have?
This page has a complete listing (and relevant links to major developments) of my diagnosis/treatment journey.
Prior to my diagnosis, I didn’t make health a priority. I had really no major health events, and perhaps my uneventful history caused me to be less worried when I first felt a lump. Because there was no “pain” associated with the lump (like many testicular cancer survivors mention), I thought it was nothing. To be perfectly honest, I felt 100% healthy and fine. Just a few weeks ago, I had completed a Spartan Sprint and was jogging in the mornings before school. I had no fatigue, headaches, swelling, fever, or anything that indicated I was sick.
However, I was in the minority of men who perform regular self checks, which should be done monthly. According the Testicular Cancer Society, only about 42% of surveyed men know know how to perform one. They’re best done after a shower, when the scrotum is relaxed, and they’re pretty easy: 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.
I found a lump while doing a routine self-exam in the shower in early October 2016. After I found my lump, I called a doctor a few days later, which began me on the path that I elaborate on in the following question. My GP, urologist, and oncologist all stressed how important calling early and not putting it off was in a successful course of treatment.
By late October, an ultrasound result caused my doctor to suspect cancer (this would be confirmed after surgery). The testicle was removed at the end of the month, but a CT in early November revealed that the cancer had spread to my lymph nodes (officially my diagnosis/staging was Stage IIB nonseminoma testicular cancer), so I needed BEP chemo. I started 21 treatments (5 days in a row, 2 days off, 1 day on, six days off, 1 day on, rinse repeat for three cycles) in late November and concluded at the end of January 2017. A scan in March showed that I was in remission, and I remain in remission as of December 2017.
What do you do now to raise awareness and to help others who may go through testicular cancer in the future?
I write and am an advocate for men’s health through my blog, A Ballsy Sense of Tumor. One of my goals is for ABSOT to help others who have been diagnosed with testicular cancer to find the resource I wish I had when I first started. I couldn’t find a patient-friendly resource that detailed the entire journey (from discovery to the struggles of survivorship) and was written from a twenty-something’s perspective. I’m hoping to fill that void and am happy when I hear others have found it helpful.
While that’s one of the missions of ABSOT, the main goal is to open up lines of dialogue about testicular cancer and men’s health in general. Testicular cancer is not talked about enough in society. My hopes are that sharing my story from beginning to end with an open attitude will stimulate more open discussion and bring a larger focus to men’s health in general. Knowing someone who is going through cancer can help make it more real to men who might not otherwise be concerned about their own health. I put my face where their balls are (which is a somewhat awkward turn of phrase).
Recently, ABSOT won an award for the Best Advocacy and Awareness Cancer Blog in 2017 and I was recognized as one of 15 People Who Raised Cancer Awareness in 2017, which should help get the word out more. In late April, I’ll get to attend the HealtheVoices Conference to learn even more tips and techniques for helping to spread awareness.
I’ve got two projects I am working on – filming a health education video for distribution throughout the state of Virginia and subsequently the nation as a whole. I am really excited about this as the filming, editing, and production will be done in conjunction with high school students, who are a part of the age range most at risk for testicular cancer.
April is testicular cancer awareness month, and I am sharing a fact (whether it be a symptom, risk factor, statistic, or something else) every day on my Instagram and Twitter page. Hopefully this gets the ball rolling on more discussion by keeping the topic of testicular health visible to anyone who follows me.
Eventually, I plan to write a book about my experiences.
How did you feel when you were diagnosed and going through treatment? Did you understand about all the support available and what was going to happen?
Physically, the hardest part of the journey was a five day span of constant vomiting. I had gotten so close to the end of my chemo regimen (19 of 21 treatments) and just totally lost my lunch – literally. I haven’t been back to Olive Garden since.
Emotionally, survivorship is significantly harder than dealing with active treatment. After months of grappling with processing what had happened in such an abrupt timeframe, I finally admitted to my doctor that I was experiencing depression and asked for antidepressants. After a few adjustments and battles with insurance, I found the right dosage and feel so much better.
My doctors were (and continue to be) awesome at explaining my course of treatment and treating the entire patient; not just the cancer.
Why are you working to raise awareness of testicular cancer? In the UK, most men find it embarrassing to talk about this private area of their body – is this the same in the States? What is the general attitude towards testicular cancer?
Men being resistant and guarded about about talking their health is a driving force behind why I do ABSOT. Society has such skewed visions of men talking about their health – we’re supposed to be seen as strong and able to heal ourselves. According to a 2016 study by the Cleveland Clinic, only three in five men actually go to their annual physical, and just over 40 percent go to the doctor only when they have a serious medical condition. 53% of all the men surveyed reported that their health just isn’t something they talk about, and 19 percent admitted they will only go to the doctor to stop nagging from their significant other, a point I can usually understand.
The title, A Ballsy Sense of Tumor, is purposefully chosen to convey that the blog is about testicular cancer and that I talk about it in as positively and with as much humor as you can use when discussing cancer. While cancer is no laughing matter, my method is to approach it with humor, awareness, and positivity. Keeping an upbeat demeanor was very important in my approach because I was feeling physically like crap, but I needed to stay internally positive. My main nurse, Jenn, even noted it in a card she gave me at the end of chemo: “You were handed a tough regimen but you were always positive and even when vomiting you were laughing and making a joke.”
Testicular cancer, and the associated terms such as balls, sack, nuts, etc etc, lend themselves nicely to puns and humor. It’d be a crime to not utilize it. Humor is a natural connector for people. In the words of Mary Poppins, it helps the medicine go down. Keeping it positive and light, while underscoring the seriousness, make conversation easier to swallow and more apt to be an actual conversation instead of a lecture.
In summary, it’s sometimes hard to have such a stiff conversation, and it’s certainly not always a ball, but you would be a nut to not sack it up and do it. Don’t get teste about it.
If you could give men 1 piece of advice – what would it be?
Carpe Scrotiem! Don’t be afraid to check yourself and talk about your ‘boys’ with your boys!
On a serious note, men need to start by talking openly about their health. I want to live in a world where we can freely talk about testicular self-exams. I want conversation to be open about all health issues, but I’m especially passionate about men’s health. Not talking about it can be a potentially life-threatening mistake. Keeping each other accountable for performing regular self-checks is also critical. Without honest conversations, this accountability is impossible.
I want to be a catalyst to start talking about testicles in everyday conversation. I want men thinking of me and checking themselves (hopefully not at the same time, but whatever works).