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Survivor stories
Cancer has touched them and the lives of those
they love, yet they have gone beyond the battle to 
raise awareness, help others and fund live-saving 

July 2007

"I was thinking about it from the standpoint of my children, and how they were at risk," says Stephanie Wagner. "This was the first Iíd 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 heís 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 sheíd 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. "Thatís pretty significant. At 39, youíre 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 sheíd inherited a mutated gene from her fatherís side of the family. "A few people in his family did have cancer, but overall it was insignificant," she says. "There just arenít that many women on that side of the family tree, so it really didnít have a big effect on the family, even though thatís 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 Ďrecycledí 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 doesnít necessarily guarantee that a woman will develop either type of cancer. "Itís an indicator of predisposition toward cancer, not a guarantee that cancer will develop," stresses Svendsen. "We donít 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 Ďcancerí often has a lot of baggage surrounding it."

Thatís one of the main reasons sheís started speaking about and working to get the message out to other Jewish women in the area. Sheís 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 Milwaukeeís Jewish community. "While we canít 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."

Sheís 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 wasnít so terrible. If thereís one thing I think women need to understand it is that the mutation is part of who you are and thereís nothing you can do to change it. What you can do is change your awareness of what you need to do to stay healthy."

ó Laurie Arendt

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

Cancer crusaders

Can one familyís tragic loss result in anotherís 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 hadnít been feeling well, but didnít 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 daughterís 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 donít want another family to experience such a tragedy. As early as their daughterís 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, itís worth it," Joan Kerns says.

They began searching for a vehicle to make a difference, and created an endowment fund in Judyís 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 Judyís life in a constructive way," Pat says.

"Also, it shows our grandchildren, eight in all, how we cope ó 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 "Judyís 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 didnít want to build a building or do research ó we wanted to get information out to the community," Joan says.

Several initiatives they are working on include:

ē Providing screening for those unable to afford it

ē Educating physicians about the importance of obtaining complete family histories

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

ē 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 ó even a rental car agent," Pat says. "We wish we knew then what we know now. We canít 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.

ó 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, itís tough to top a cancer patient. And when itís fun and fitness youíre 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 Universityís menís soccer program and E.C. Miracles, a nonprofit organization headed by MU assistant menís coach Khaled El-Ahmad. It spanned five Friday evenings at Marquetteís 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. "Thatís 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 ó El-Ahmad is her oldest sonís 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 menís and womenís soccer staffs, plus 30 Golden Eagle players, worked at the camp. "Itís pretty personal with us," El-Ahmad says. "As far as we know, this is the first camp like this in the country, and itís a great cause."

The Womenís 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.

ó Cathy Breitenbucher

Kay Yuspeh

Charitable focus

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

"All these years, itís something I donít 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 wasnít 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 couldnít see anything." Those dreams faded, but growing up with one eye was difficult. "I was called cross-eyed. Or people would ask me, ĎAre you cross-eyed?í And Iíd say, ĎNo.í Or, ĎAre you blind?í And Iíd say, ĎNo.í"

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 shouldnít 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 didnít have it," she says, noting that today, losing an eye isnít the only treatment option. "Theyíre fine."

Being blind in one eye is difficult for Yuspeh on a daily basis. "I donít talk about it, but itís something Iím aware of every day. I walk into things. I walk outside my office and I donít see anyone coming across," she says. "If I go to a cocktail party, I donít want anyone sitting on my left side," she says. "I like to be the behind-the-scenes person. I donít like to be in front of a crowd."

Nonetheless, Yuspeh, of River Hills, chose a physically demanding career ó physical fitness. "I didnít want anyone to say I couldnít do something because I was blind." Sheís 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. Iíve done triathlons. Iím a horseback rider. I have horses.

"Team sports are harder than individual sports," she says. "In tennis, I donít like playing doubles. I donít 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 donít accept failure. But Iím 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, Yuspehís 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 itís her way of giving back, and despite her challenges, sheís grateful. "Itís a disease that goes from one eye to another. Iíve always considered myself lucky. If my parents wouldnít have caught it, I would be totally blind."

 ó Candace Doyle