To say Eric van Gestel has taken his breast cancer diagnosis in stride is a tremendous understatement. As a middle-aged male, thrust into dealings with a disease that predominantly affects women, he has emerged as the mouthpiece for an under-represented population. A pioneer in the making, van Gestel is leading the charge and changing the way the world views breast cancer, all with a witty line and a smile.

Since he was diagnosed in January, the 51-year-old entrepreneur has undergone a mastectomy and 16 rounds of chemotherapy. But that hasn’t stopped him from educating men about the disease’s impact – a subject that, he said, can be difficult to broach.

“The breast cancer awareness campaign is amazingly successful, but it’s also a victim of its own success, in that it creates an image that breast cancer is a female thing,” van Gestel said. “And it’s not limited to that.”

According to the American Cancer Society, approximately 1 percent of all breast cancers occur in men, and the lifetime risk of a male getting breast cancer is about one in 1,000.

And while the numbers are far from staggering, van Gestel said he believes the concern is great enough.

“Why not take it to the next step?” he said. “Let’s infuse males into this discussion. Let’s educate the public.”

Van Gestel was living in Sausalito at the time of his diagnosis, but has since relocated to Dublin. After discovering a lump in his breast, he said he initially failed to pursue a check-up for three months. Now, he encourages all males to take the matter seriously.

“As men, we stick our heads in the sand,” van Gestel said. “We ignore [lumps for] too long and then they [are able to] migrate to the lymph nodes. Don’t be dumb. There’s no reason to be embarrassed about this.”

But what he encountered after his initial diagnosis is, perhaps, the most surprising of all.

Van Gestel explained that many of the people he met with, including insurance company representatives, were ill informed about men dealing with breast cancer. He said he often felt excluded, even by something as simple as the color pink, which has come to be the unofficial color of breast cancer awareness.

“The problem is insurance companies and other programs are just starting to understand it’s an affliction males get,” he said. “My mastectomy was no different than anyone else’s. We go through all the same stuff.”

And van Gestel is not alone in his experience.

Mill Valley resident Gerry Bourguignon, a male breast cancer survivor and current board member of the To Celebrate Life Breast Cancer Foundation, said he encountered the same after being diagnosed four years ago, which prompted him to also take action.

The volunteer-based organization’s mission is to raise funds and grant financial assistance to nonprofits that, in turn, provide services to individuals living with breast cancer. Since 1996, To Celebrate Life has raised and distributed more than $3.7 million to Bay Area nonprofits.

“Most organizations don’t even mention men,” Bourguignon said. “To Celebrate Life was really upfront about wanting to help men. They make sure all of the agencies they support are helping male patients.”

Bourguignon, 71, began aggressively researching the disease after his diagnosis, as he holds a Ph.D. in biochemistry and molecular biology. And although he doesn’t claim to have all the answers, he did provide a simple theory on how to increase awareness.

“Many breast cancer organizations can’t get funding because men don’t make up a significant enough portion [of the affected population],” Bourguignon said. “If men make up one percent [of the patient population], one percent of the funding should go toward men.”

Bourguignon said many of the shortcomings deal with medication and treatment procedures, which are typically designed with women in mind.

“Almost every breast cancer patient, regardless of gender, will be recommended to have hormonal therapy,” Bourguignon said. “The problem is there are often very difficult side effects. Severe muscle cramps, joint pains; it can be very debilitating.”

A recent study from the California Cancer Registry shows a drop in breast cancer incidence and mortality rates in Marin County between 2006 and 2010. However, incidence rates in Marin are still approximately 10 percent higher than the rest of California and approximately 20 percent higher than the national average.

Marin County Public Health Officer Dr. Matt Willis said the declining numbers are a step in the right direction.

“Our overall understanding of the disease, our ability to detect cancer at earlier clinical stages and improvements in personalized therapy have all contributed to lower mortality rates,” Willis said.

Stepping out for a cause

In 2010, Bourguignon participated as a model in To Celebrate Life’s annual Stepping Out Gala and Fashion Show, which features models who have all survived breast cancer. The event aims to raise both funds and awareness for breast cancer patients who are unable to pay for necessary treatments.

“It’s amazing how motivating it was,” Bourguignon said. “I never thought that I would do that, but I enjoyed it thoroughly.”

This year, van Gestel, too, will take a spin on the runway.

“I obviously want to participate to create awareness for men, but I also think there’s a shock factor that could be positive for women,” van Gestel said. ”There’s so much noise out there that women gloss over it. If all the sudden a guy goes strutting down the runway and a woman sees it, she might think, ‘Maybe I ought to go in for my mammogram.’”

Van Gestel is also preparing to launch a nonprofit organization, NotJustPink, which will be geared toward the inclusion of men in the breast cancer discussion. In addition to using the color blue, he said he will make other adjustments to make men feel comfortable, like referring to breast cancer as “chest cancer,” and mammograms as “man-o-grams.”

“The way we deal is we make jokes,” van Gestel said. “I want to be able to approach regular guys and make them feel comfortable. If my talking about it helps someone, then I die a happy man.”

Van Gestel, who prefers to call himself “cancer free,” said he is grateful of his significant other Elaine Ashley, who’s stuck by his side through the difficult nine months.

“She could’ve easily walked away, but that’s not her,” van Gestel said. “It makes me realize what I’ve got, but it also makes me realize that I’m mortal.”

Bourguignon said van Gestel’s positive outlook and enthusiasm has revitalized his dedication to the cause.

“It’s a tremendous boost in my energy level to keep pushing,” Bourguignon said. “If somebody wants to work hard with you, it becomes very motivating.”

Catch van Gestel and Bourguignon at the To Celebrate Life Breast Cancer Foundation’s 18th annual Stepping Out Gala and Fashion Show on Saturday, Sept. 28, at the Marin Center Exhibit Hall, 10 Avenue of the Flags, San Rafael. For more information, visit tocelebratelife.org.

Contact Gregory Andersen at gandersen@marinscope.com.

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