"I was thinking about it from the standpoint of my children, and how they were at risk," says Stephanie Wagner. "This was the first I’d heard about the connection and how it could relate to me."

Like most of us, when Stephanie Wagner looks in the mirror, she can see the resemblance she has to her father. She has his eyes, and his coloring. She likes to think he’s passed on his sense of humor to her, as well as a little bit of his intellect.

And a little more than a year ago, she found out what else she’d inherited from him. "I was diagnosed with breast cancer at 39," she says, noting that the cancer was first discovered through her annual visit to her ob/gyn. "That’s pretty significant. At 39, you’re too young to be having annual mammograms."

A family friend who happened to be a physician suggested that Wagner be tested for a genetic predisposition to breast cancer. Wagner is Jewish, and the friend knew that there was a connection between breast cancer and women of Eastern European or Ashkenazi Jewish descent. After testing, Wagner found out she’d inherited a mutated gene from her father’s side of the family. "A few people in his family did have cancer, but overall it was insignificant," she says. "There just aren’t that many women on that side of the family tree, so it really didn’t have a big effect on the family, even though that’s how the mutation was passed on."

According to Sara Svendsen, a genetic counselor at Froedtert Hospital and Medical College of Wisconsin, the prevalence of mutations in the breast cancer 1 and 2 genes are more likely in Ashkenazi Jewish than women in the general population. "Ninety to 95 percent of the Jewish women in our area have Eastern European ancestry," she notes.

Svendsen says that it is likely that, despite the large population of modern descendants, the Ashkenazi Jews probably started with a population of 1,000 to 2,000 people generations ago. "And like many ethnic groups, the Ashkenazi Jews tended to marry within their own community," she says. "When this happens, the genes tend to get ‘recycled’ with each successive generation."

The mutation can be passed on to children from either their mother or their father.

Research has discovered that women who carry either the gene mutation have up to an 80 percent risk of developing breast cancer and up to a 40 percent risk of developing ovarian cancer during their lifetime. Inheriting the genetic mutation doesn’t necessarily guarantee that a woman will develop either type of cancer. "It’s an indicator of predisposition toward cancer, not a guarantee that cancer will develop," stresses Svendsen. "We don’t know at this point what other factors are involved: Aging, environmental exposure and so forth."

For Wagner, the new knowledge was a wake-up call, both in how she pursued her own care and in becoming an advocate for other women of Ashkenazi Jewish descent. After discussing her treatment options with her doctor and her overall risk factors, Wagner chose chemotherapy and a bilateral mastectomy. She is still involved in her treatment and recovering from the effects of the surgery and chemotherapy. "A lot of women find that a cancer diagnosis is scary and overwhelming, which it can be, but the more you learn and understand, the less afraid you will be," she says of her experience. "Even if you get cancer, in many instances, its not a death sentence at all now, particularly if you can catch the cancer at a very early stage. The word ‘cancer’ often has a lot of baggage surrounding it."

That’s one of the main reasons she’s started speaking about and working to get the message out to other Jewish women in the area. She’s hoping that her efforts can be replicated in other cities to help make women more aware. In March, Wagner organized a panel discussion with experts from Froedtert and Medical College of Wisconsin at Congregation Shalom in Fox Point to help increase knowledge of the issue in Milwaukee’s Jewish community. "While we can’t change our heredity, we can be more proactive in screening for cancer, which can have a significant impact on treatment and survival," she says.

Wagner is not an automatic advocate for genetic testing. Instead, she encourages women who think they might be at higher risk to work with their physician or their local breast cancer clinic. Wagner worked with the specialists at Froedtert; her sister is involved with a similar program at Northwestern in Chicago where she lives. "The goal is to detect cancer at its earliest stages," Wagner says. "When you are able to catch it early, the treatment is not as aggressive and the prognosis is quite good."

She’s just reached the milestone first anniversary of her diagnosis. Looking back, she says there are some positive elements in her experience. "I faced breast cancer like any other major health issue," she says. "It wasn’t so terrible. If there’s one thing I think women need to understand it is that the mutation is part of who you are and there’s nothing you can do to change it. What you can do is change your awareness of what you need to do to stay healthy."

— Laurie Arendt

Pat and Joan Kerns are raising awareness about colon cancer screenings.

Cancer crusaders

Can one family’s tragic loss result in another’s gain? That is the goal of Joan and Pat Kerns of Mequon, who lost their daughter, Judy Kerns Pence, to colon cancer in December 2003.

The busy mother of three children hadn’t been feeling well, but didn’t take the time to go to the doctor. When she finally did seek medical help, doctors found a malignant mass in her colon. Her life was a roller coaster for the next 18 months, her parents say, and she lost her battle at the age of 42. "Our daughter’s death may have been prevented if she had been screened for colorectal cancer," Joan Kerns says.

While they prefer to celebrate her life and rejoice in her accomplishments rather than dwell on her death, the Kerns don’t want another family to experience such a tragedy. As early as their daughter’s funeral, Pat Kerns urged all his friends to get screened for colon cancer and told them no one is too young to get the disease. "When detected early, it is quite curable," he says.

Although they acknowledge it may not be table talk, they are most willing to discuss bowels and colonoscopies. "It may be embarrassing, but if it saves your life, it’s worth it," Joan Kerns says.

They began searching for a vehicle to make a difference, and created an endowment fund in Judy’s name at Aurora Sinai Medical Center. It is designed to build awareness of the importance of early screening and detection. "It was important for us to make something positive happen from this tragedy and to continue Judy’s life in a constructive way," Pat says.

"Also, it shows our grandchildren, eight in all, how we cope — that we have to go on with our lives in a positive way even though we think of Judy every day and always will," Joan says.

With a family founding gift, they launched the fund at "Judy’s Night," a kick-off event held in 2005 that drew more than 300 people. So far, they have raised more than $250,000 that is being used to educate the public and the health care community on the prevention and early detection of colon cancer. "We didn’t want to build a building or do research — we wanted to get information out to the community," Joan says.

Several initiatives they are working on include:

• Providing screening for those unable to afford it

• Educating physicians about the importance of obtaining complete family histories

• Establishing an annual lecture featuring a national expert to discuss related topics

• Reaching out to groups identified as high risk

The couple are passionate about their goal to save lives through screening and early detection. "I tell everyone I know to get screened — even a rental car agent," Pat says. "We wish we knew then what we know now. We can’t go backward, but we can go forward to educate others, prevent the disease and save lives."

The Kerns find their dedication to this effort to be satisfying and therapeutic. "It makes us feel good to talk about Judy while helping others at the same time," Joan says.

For more information about the Judy Kerns Pence Cancer Fund, contact Aurora Sinai Medical Center, department of philanthropy, (414) 219-7359.

— Mardee Gruen

Cancer survivor Cathy Shaw helped organize a Soccer Mom Camp, the first of its kind in the country.

Kicking cancer

When you think of devotion, you might think of a mother. When it comes to determination, it’s tough to top a cancer patient. And when it’s fun and fitness you’re talking about, soccer definitely fits the bill.

The worlds of moms, cancer patients and soccer came together this spring in the first Soccer Mom Camp, promoted by Cathy Shaw of Fox Point and Ginny McCullough of Glendale.

The camp was created by Marquette University’s men’s soccer program and E.C. Miracles, a nonprofit organization headed by MU assistant men’s coach Khaled El-Ahmad. It spanned five Friday evenings at Marquette’s Valley Fields complex, drawing 55 women participants ranging in age from their mid-20s to their 50s. Early figures had the effort raising some $5,000. "Dollars were raised, which was incredible, but to do something healthy that is exciting and competitive was great for my kids to see," Shaw says. "That’s how we change the world, one person at a time."

Shaw was diagnosed with breast cancer two years ago at age 37, following a 10-year stint as a fund-raiser in the Marquette athletic department. Her MU connections remain strong — El-Ahmad is her oldest son’s coach with the Bavarian Soccer Club.

Shaw underwent a double mastectomy, chemotherapy and radiation to beat cancer, all the while penning an online journal that detailed her treatments and the support she received from family and friends. "I never really drove any attention to the fight, other than living it," she says. "This puts me back a little closer to the cancer than I had been in the last year."

While El-Ahmad was working with Shaw to develop the camp idea, he also was talking with another MU coach, Stan Anderson, whose sister is a breast cancer survivor as well. In the end, the entire MU men’s and women’s soccer staffs, plus 30 Golden Eagle players, worked at the camp. "It’s pretty personal with us," El-Ahmad says. "As far as we know, this is the first camp like this in the country, and it’s a great cause."

The Women’s Soccer Club Inc., which has 1,200 adult members, helped drum up participation in the camp, according to McCullough, who serves as its CEO, president and executive director. "We promote women and health."

The camp featured instruction and fun activities, and on its final night put the women in the spotlight with a full-production game that included a PA announcer, national anthem and other authentic touches. Organizers already are making plans for next year.

— Cathy Breitenbucher

Kay Yuspeh

Charitable focus

Kay Yuspeh’s been keeping a dark secret most of her 56 years: She is blind in one eye.

"All these years, it’s something I don’t talk about," she says. The cause is retinoblastoma, a rare childhood cancer diagnosed when she was 2 or 3 after her parents thought her eye "looked cloudy."

"There wasn’t any treatment," she says. "I had an eye removed."

To this day, Yuspeh remembers nothing of the surgery. But her subconscious did. "I was in high school. I would have dreams that I saw bright lights and couldn’t see anything." Those dreams faded, but growing up with one eye was difficult. "I was called cross-eyed. Or people would ask me, ‘Are you cross-eyed?’ And I’d say, ‘No.’ Or, ‘Are you blind?’ And I’d say, ‘No.’"

It also forced her to make some tough choices. "Two weeks before I was married, I was having my vision checked and the doctor told me I shouldn’t have kids," she says, since retinoblastoma has a hereditary component to it. She took the risk, and has three grown children with husband, Richard. "I watched very carefully that they didn’t have it," she says, noting that today, losing an eye isn’t the only treatment option. "They’re fine."

Being blind in one eye is difficult for Yuspeh on a daily basis. "I don’t talk about it, but it’s something I’m aware of every day. I walk into things. I walk outside my office and I don’t see anyone coming across," she says. "If I go to a cocktail party, I don’t want anyone sitting on my left side," she says. "I like to be the behind-the-scenes person. I don’t like to be in front of a crowd."

Nonetheless, Yuspeh, of River Hills, chose a physically demanding career — physical fitness. "I didn’t want anyone to say I couldn’t do something because I was blind." She’s the owner of the four area Elite Fitness and Racquetball Clubs, and very active. "I bike, so I have to make sure I have a rearview mirror. I’ve done triathlons. I’m a horseback rider. I have horses.

"Team sports are harder than individual sports," she says. "In tennis, I don’t like playing doubles. I don’t want to hit my partner."

Being blind in one eye has defined her, she says. "As my mom said, it made me more competitive. I don’t accept failure. But I’m also more understanding of other people because I do have a handicap," she says.

And more giving. Her clubs have staged many fund-raisers and raised $250,000 alone for the nonprofit Prevent Blindness. Just this past June, Yuspeh’s clubs were among the hosts for the Women for MACC Tennis Tournament. "There are very few charity events we turn down," she says.

Yuspeh says it’s her way of giving back, and despite her challenges, she’s grateful. "It’s a disease that goes from one eye to another. I’ve always considered myself lucky. If my parents wouldn’t have caught it, I would be totally blind."

 — Candace Doyle