When Jaimeson Jones doubled over at the finish line of a few cross-country races during junior high, his parents weren’t overly alarmed.
After all, teenagers get growing pains. And athletes push through muscle strains, minor injuries and discomfort all the time, right?
His parents urged the student at Bothell’s Skyview Middle School to wear better athletic support.
Months later, Jones collapsed in pain, unable to move. By the end of the day, he’d been diagnosed with late-stage testicular cancer.
Aggressive chemotherapy and surgeries bought him a remission that allowed him to attend high school, go to college for a year, row on Washington State University’s crew team, have a serious relationship and travel a little bit. But less than five years later, the cancer was back, and it had spread to his lungs.
Jones died in 2010, at age 20.
His death so affected his mother and then-stepmother that they started The Family Jewels Foundation to educate boys and men about testicular cancer — the most common cancer in American males age 15-35 — and help them have desperately needed, no-nonsense conversations about their health.
What haunts Nancy Balin, who was married to Jones’ mother at the time, is how preventable Jones’ death was. Testicular cancer is 95%-98% curable when caught early. Had her stepson gone to the doctor when he first noticed a problem, his story might have ended differently.
“He had been having pain and swelling for a year but was too embarrassed to tell his mom,” Balin said.
Balin left her legal practice to work full-time on the foundation, which also awards scholarships to students who have had a sibling with cancer — sometimes called “shadow survivors” because they can feel sidelined while the family’s financial and emotional resources are overwhelmingly directed toward the ailing child.
“Many siblings feel like they’ve lost their parents as well as a sibling to the disease,” she said.
So far, the foundation has awarded five scholarships, two through the WSU Foundation, to siblings of children with cancer. This year, it committed to give $40,000 over four years to three students from the Northshore School District, where Jones went to school.
Balin makes health presentations at any gathering to which she is invited; she has spoken at rotary clubs and high schools including Juanita, Garfield, Ballard and Nathan Hale.
To get her message across, she uses cheeky humor and plain talk to discuss symptoms and address the embarrassment that can cause delays in diagnosis and treatment.
The foundation calls its annual fundraising event “The Ball Crawl.” It includes beer tastings at various breweries around Kenmore, and visitors are invited to step into what Balin calls the “Nut Hut,” a small, enclosed tent structure where people can palpate a realistic-feeling scrotum to practice detecting deeply embedded “masses.” It’s also a private place where men can do a quick self-exam, Balin said.
“The best moment of my life is when someone goes in the Nut Hut and I hear a belt buckle and a zipper,” she said.
Though Balin said she will never get over the “ridiculousness” of Jones’ death, she is heartened by the reaction she gets from people who hear her speak or visit the Nut Hut.
“I tell guys, ‘I know you’ve been going ‘down there’ since you were nine months old. Don’t tell me you haven’t! Now, while you’re down there, check them out and know what they’re like on a regular basis. If they change size, get lumps and bumps or start hurting, say something,'” said Balin, who also advocates for testicular exams to be conducted routinely during sports physicals. “The biggest thing is not to wait.”
She said her stepson had three kinds of testicular cancer, and one of them, the most aggressive, is estimated to double in size every month.
“Jaimeson waited a year,” she said.
When men can have the candid conversations Balin encourages, they’re better equipped to take care of the many issues that commonly affect men, whether it’s cancer, mental health, heart health or high blood pressure. Crucial in that equation is finding the right doctor and seeing them regularly, said Dr. Scott Itano, a primary care physician with Kaiser Permanente, who equates finding the right doctor to dating.
“You want to be with somebody you trust, maybe even somebody you can joke with,” Itano said. “Even if someone feels healthy, there might be some aspect of family history that a doctor needs to know. There are things you might not feel but could be at risk for potential harm.”
Every year, about 174,650 men in the United States are diagnosed with prostate cancer, 9,560 with testicular cancer, 2,670 with breast cancer, and 2,080 with penile cancer. Many of these cancers could be caught early if men followed Itano’s advice.
At UW Medicine’s Urology Clinic, Dr. Richard Pelman said he usually sees men after a co-worker or a friend has been diagnosed with prostate cancer. While he’s always glad when men come in, he would rather they established relationships with primary care doctors instead of coming to him only after being scared by the diagnosis of someone they know.
“When you have a doctor who really knows you, you have someone you can talk to,” Pelman said. “We really want to get men in the hands of primary care doctors. That relationship cannot be undervalued.”
Pelman has for decades tried different methods to encourage men to have regular contact with their doctors. In the 1990s, he created a pamphlet to pass out at his clinic and worked with area companies to distribute it to employees. Last year, he started a podcast called “The Original Guide to Men’s Health.”
“Whatever hook works,” he said.
Macho norms — toughing it out, not asking for help — can play a role in keeping men away from the doctor’s office as well, Itano said. But when he encounters that attitude, he tries to turn it to his advantage (and the patient’s).
“If you can stay healthy, not only are you going to be a good role model for your family, you are going to be able to provide better for your family,” he said.
Balin recently heard from a 16-year-old who reported changes in his genitals to his father, who told him not to worry.
“I told him, ‘You are your own best advocate. Ask for a second opinion,'” she said.
If something feels wrong, Balin advises, check it out and don’t accept an easy answer if the first answer doesn’t feel right.
“If somebody says it’s a pulled muscle, don’t be lulled just because it’s what you wanted to hear,” she said, “and don’t be embarrassed to death.”