Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.

“A Ballsy Sense of Tumor:” How Justin’s Testicular Cancer Diagnosis Led Him to Advocacy Around Men’s Health

When we are young, we often feel invincible, as though the world is ours to conquer. With seemingly clear heads and clear minds, we’re prepared to tackle whatever is in front of us—although our youth often tricks us into thinking that nothing bad is yet to come.

At 25 years old, Justin felt invincible. He felt healthy, strong, alive. Much like most 25 year olds, he didn’t think much about his health or potential health issues that might arise. He was too busy enjoying life, living day-to-day.

Then one day he felt a lump in his left testicle. From a young age, his pediatrician had instilled in him the importance of monthly testicular self-exams. And that October, he felt significant changes from the month before.

At first, Justin thought about ignoring his symptoms—especially given the stigmas associated with men’s health. He explains:

“I think men’s health, in general, is under-discussed. When I told my friends about how I found the lump, I had to really explain what a testicular self-exam was and why it should be done. I’ve found that there’s a notion that men don’t necessarily talk about their health because it can be seen as ‘weak.’ This is an issue that is self-perpetuated, and we need to change the narrative to the idea that you are strong when you are vulnerable. You have to take care of your health to be there to protect the people you love.”

Since his diagnosis, Justin has become an advocate for other cancer survivors, including through Bristol Myers Squibb’s Survivorship Today, an initiative that aims to share stories of people across the country who have been affected by cancer and advance our collective understanding of what it’s like to live with the disease today. In sharing his powerful story of how he was diagnosed with a rare form of testicular cancer, Justin hopes to fight the stigma that comes along with male mental and physical health, and to encourage others along their journey.

Justin’s Journey

After finding the lump in his testicle, Justin made the decision to see a doctor. An exam and ultrasound showed the presence of a concerning mass. One urologist referral later, Justin was told that he needed an immediate operation. He says:

“I was very fortunate that my entire medical team from my primary care physician to my oncologist and urologist did a great job of explaining what would happen. I got as much information as they could possibly give from that initial visit to surgery, which was about ten days later. I recognize that isn’t always the case, but I’m very thankful that my doctors explained everything and let me process while also underscoring the urgency.”

Following surgery to remove his left testicle, Justin underwent a full-body scan, where doctors learned that his cancer had spread to his lymph nodes. He then had 21 aggressive chemotherapy treatments in a three-month span, which he explains was physically the toughest thing he has ever done. Justin shares:

“I would definitely do it again if needed, because it saved my life. But chemotherapy in television and movies is completely different than experiencing it first-hand.”

What is Testicular Cancer?

Testicular cancer is a cancer that manifests in the testicles (testes), two glands located inside the scrotum that make testosterone and sperm. Doctors haven’t identified the exact cause of testicular cancer, but they have found risk factors: having an undescended testicle, abnormal testicular development, being Caucasian, or having a family history of testicular cancer.

Although testicular cancer is considered rare, it is also the most common cancer in men between ages 15-35. Testicular self-exams, like the ones Justin conducted, can play a crucial role in early discovery and treatment. This cancer often affects just one testicle, so the following symptoms may be found in only one testicle:

• A testicular lump
• Testicular inflammation and/or pain
• Abdominal or groin pain
• Sudden fluid collection in the scrotum
• Back pain
• Enlarged or tender breast tissue
• A “heavy feeling” in the scrotum

Unfortunately, there are still many myths and misconceptions floating around about testicular cancer. Says Justin:

“One of the most common myths I’ve heard is that getting hit in the testicles or biking too much causes testicular cancer. That isn’t true. Maybe someone gets hit in the testicles and it hurts for longer than it should, which leads them to get checked out, but it isn’t the exact cause.

Another misconception is what it means for you as a man to have your testicle removed. That was something I was very concerned about and wanted to keep private. I thought I was going to become less of a man, but I’m the man I am today because of what I went through. Being a man isn’t tied to having two testicles. The thousands of testicular cancer survivors are some of the manliest, strongest men I know for talking about their experiences. It also won’t stop you from being a father. My wife and I conceived naturally for both my son and my daughter, who we recently welcomed into the world.”

Fighting Stigma

While the physical impact of cancer and treatments wore on Justin, he found himself grappling with an entirely separate stigma and concern, one that relates to the fear and anxiety that diagnosis and treatment can bring: mental health. He shares:

“I think healthcare providers do a great job in managing physical symptoms. Towards the end of my treatment, I was dealing with extreme nausea, coughing, and insomnia. Doctors could treat this, no questions asked. But I didn’t anticipate the importance of dealing with mental health, nor did I recognize the ramifications of mental health long after my treatments ended.”

As he faced uncertainty about his health and his future, Justin found himself grappling with depression and anxiety. He felt alone and isolated—and with each upcoming scan, the anxiety levels grew. As he shared on SurvivorshipToday.com, he wanted to return to “pre-cancer Justin.”

While Justin has overcome his feelings of depression and anxiety, and now shares his story to help others on their journey, he believes that mental health support should be integrated in the cancer survivorship journey from the start. For example, he suggests:

“Just like oncologists come to check on you, it would be nice to have a social worker or counselor available to check in and talk. I think having that resource available, and knowing that it’s there, would be invaluable.”

A Ballsy Sense of Tumor

Throughout his journey, Justin came to recognize the importance of community connections and building relationships with others who have gone through this. When he was first diagnosed, he began searching for stories of what the treatment journey would be like. Instead of finding personal stories of what to expect while going through treatment, Justin found mostly clinical information.

He began to journal as an outlet to vent and share his thoughts. Then, he shares:

“My friend encouraged me to create the resource that I wish I had. That was the impetus to help the next Justin, the next version of not just myself, but others going down this same path. A Ballsy Sense of Tumor was born from the idea of writing down my account of going through testicular cancer while helping men talk about their lives and the realities of living with cancer.”

A Ballsy Sense of Tumor encompasses broad information from how to do a self-exam to the difficulties of dealing with fatigue or the phenomenon of “chemo brain.” Justin explains:

“When I started sharing my story and opening up, so many others felt comfortable sharing what they went through. A Ballsy Sense of Tumor helped me to reorient my life and set myself on the path I want to take. But more importantly, it helped connect and share the stories of cancer survivors across the country—and these stories are far more valuable than statistics or clinical guidelines.”

Living a Full Life

Today, Justin is 32 years old and thriving. He has been in remission for just over six and a half years, and enjoys spending time with his family, writing, and being an advocate; he not only runs a testicular cancer awareness campaign with local schools and shares his personal story with cancer survivorship as part of the Survivorship Today series, but works with Savvy Cooperative, which empowers people to use their patient experiences to improve health innovations. At Savvy Cooperative, he shares:

“Everyone has some sort of experience with cancer and chronic illness, so we really put the patients first. We even brought 12 patient partners to a conference earlier this year and saw developers walking away realizing that they need to talk to patients more. If healthcare companies and innovators aren’t asking patients what they want and need, they are probably missing the mark. If someone is talking about patients, they need to talk with patients.”

Beyond that, Justin remains tied to his own personal advocacy and is driven by a mission to ensure that every testicular cancer patient and survivor has the tools they need to get through their tough times. Says Justin:

“I know that this journey can feel isolated and alone. But you’re not alone. There are so many resources out there. Don’t be afraid to lean on your support systems. If someone offers help, take them at their word and ask for what you need. Be open and honest, as much as you’re comfortable with. I know that we all have such different stories, or cancer types, or experiences, but it’s important to find the common threads between us. You are not alone.”