Q&A: Raising Awareness With the Testicular Cancer Society

When attempting to prevent any form of cancer, awareness of where and how it affects people is often the best place to start. With testicular cancer, we know it's fairly rare—only about 8,000 to 10,000 cases per year—and primarily afflicts younger men, ranging from the ages of 15 to 49.

Because it accounts for just 1 percent of all cancers that occur in men, though, testicular cancer is rarely discussed in everyday life. On top of the rarity, treatment for testicular cancer is straightforward and often successful, with a 95 percent five-year survival rate. But this lack of dialogue can make people feel as if there's nothing to worry about, when in fact, early detection—knowing what to look for and when to see your doctor—is just as critical as it is with any other type of cancer.

That makes awareness paramount in treating and preventing testicular cancer, even given its rarity and treatment success. For Testicular Cancer Awareness Month, we talked to testicular cancer survivor Mike Craycraft, the founder of the Testicular Cancer Society, about the difficulties of raising awareness, certain misnomers regarding causes and why self-examinations are still vital.

The main point is that it's primarily a young man's disease. It's the leading cause of cancer in men ages 15 to 49. The issue is that for that age group, cancer isn't generally common. So people are not thinking about how a testicle problem could be testicular cancer.

Researchers worldwide have different ideas about what it could be. For instance, some think puberty could trigger cancer cells, but there's no concrete reason for why it affects younger men. However, a majority of people who get it are in their 20s and 30s.

I think men's health, in general, isn't as preventive with care as female health. Females monthly go to the gynecologist and they're used to more preventive care. Guys tend to have an "I'll fix it once it's broken" mentality.

It's tough to break that down. One, you have to get the attention of young guys, and then you have to deliver a message that will stick with them. Sometimes it's having others in their lives to help get them aware of it. You just have to notice changes and go to the doctor if you do notice something.

I mean, there are all sorts of myths around it. Ones that come to mind are that you can get it by getting kicked, if your pants are too tight or from riding a bicycle, but that doesn't involve the awareness of it. I think the biggest issue we find is normalizing the conversation. When it's mentioned, the first thing people hear is testicles, and it mind-boggles them when it shouldn't. We're talking about cancer of a body part, and yet there's still a lot of taboo around mentioning the word "testicle." You don't hear it in normal conversation or on the news often. I think that's the biggest problem. It's the taboo around it and not having normalized conversations.

We've gone in high schools with breast cancer organizations and we'd split up with the guys and girls, and I noticed and said that when we go into these schools, the breast cancer folks have free rein and I have a guy following me around all day. We mention a testicle, so people inherently think it has to have some kind of sexual connotation. We've tried to get around it by getting young men where they are. We have Twitch streamers who do awareness events and just chat. If they're joking about balls, we'll jump into the conversations. The guys affected by it are the ones who help normalize the conversation. We've tried to use the pamphlet and have people read it, but those methods don't work anymore. Now, we've created an app, and they can go to ballchecker.com to download it.

Yeah, I think there has to be some kind of humor to get attention. It's a serious topic, but humor can break the ice. For instance, I'll often mention how I have one testicle because of cancer.

I think it's a challenge, I mean, it is difficult. We face challenges; we're used to it. The main issue is no one is talking about it. [According to some of our surveys], 62 percent of the guys said no one had talked to them about it. And, of the people who had talked about it, the highest response for that group was 22 percent saying their doctor brought it up. So only 1 in 5 heard about it from the doctor and about 1 in 10 heard about it from their parents. No one's mentioning it.

We see narratives and things on TV that are starting to mention it, but a lot of times, it's a joke rather than anything serious. But we're getting there.

I don't know if it's difficult. The experts and people who treat it know it well and take it seriously. One of the issues is there are not enough [experts]. There are 10,000 urologists, and only 9,000 cases per year, so there's not even a 1-to-1 ratio. In that sense, it can hurt expertise. What we find is the mental and emotional challenges of the disease can be much more difficult than the physical challenge. You hear the word "cancer" and it flips your world upside down.

The issue is that there's no substantial evidence that it prevents cancer. We say check your testicles once per month and if you notice anything wrong, go to the doctor. They [the task force] say it might cause more harm than good. There's no evidence it would actually cause harm, but in these situations, they review the evidence and there's never been a randomized trial that followed guys who checked their testicles once per month and then followed them to see if it made a difference in preventing death.

Is a month a perfect interval? Maybe not, but you need something to get familiar with your testicles. We get guys calling worried about their testicles after finding epididymitis.

I mean, really, just going to our website, testicularcancersociety.org, or ballchecker.com. The app has info on the type of cancer, and you can connect with us through the app. The learning curve is really only five to 10 minutes. All you need to know is it can occur at any age and it primarily affects young, healthy males. If you [detect] it early, it's basically 100 percent curable, and if you notice any changes, contact your doctor immediately.