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Great expectations
Stacy Victor battles back from rare form of bone cancer

Photo by Dan Bishop

October 2012

Stacy Victor and her fiancé, Jonathan Berg, were eagerly anticipating their trip to Las Vegas to celebrate his 30th birthday. But it was only one week to departure, and Victor could no longer ignore the shooting pain from her right shin to her hip.

"I was in perfect health, but I had this lingering problem," she says. "I had felt the first pain about a year and a half before then, but it was intermittent. I thought it was a pulled muscle."

Victor had spent five months in physical therapy, but instead of improving, the pain was becoming constant. Her doctor thought it was sciatica, and she was intending to have back surgery to relieve the irritated nerve. An orthopaedic surgeon took preliminary X-rays, and detected a tumor above her femur (thigh bone).

The couple cancelled their vacation and put their wedding plans on hold. "I was devastated and in disbelief," Victor says. "At the age of 26, I never expected it to be cancer."

Her case was referred to Dr. Donald Hackbarth Jr., an orthopaedic surgeon with Froedtert & The Medical College of Wisconsin Clinical Cancer Center. He is part of an interdisciplinary team of physicians who are experts in the complexities of musculoskeletal cancers, or sarcomas. These malignant tumors compress and destroy bone tissue as they grow, causing pain and swelling. Development of a sarcoma is currently believed to be a random event.

Hackbarth evaluated Victor’s bone scans, which revealed a large destructive tumor and mass outside the femur. A pathologist processed the biopsy, which showed a particular gene rearrangement, or fingerprint, of a rare form of cancer. On Nov. 2, 2010, Victor was diagnosed with Ewing’s sarcoma, which represents 1 percent of all childhood cancers.

"The majority of cases occur before age 20. Stacy was at the upper limit of the age group, but 10 percent of patients with Ewing’s sarcoma are between 20 and 30 years old," Hackbarth says.

This type of sarcoma has a high propensity for metastasis (spread), usually to the lungs, but responds well to chemotherapy. "Surgery is the mainstay, but chemotherapy takes an important role in the treatment of Ewing’s sarcoma," says Dr. John Charlson, Victor’s oncologist. "It is another weapon against cancer that is helping to improve survival rates."

Victor’s treatment plan originally included 14 rounds of chemotherapy, limb salvage surgery and radiation therapy. She began chemotherapy immediately, but suffered greatly from the side effects and could withstand only 11 rounds.

At one point, Victor had severe damage to her digestive system and was unable to eat or drink. She was readmitted to the hospital and administered an IV. "That was when I lost the most weight; I was down to 89 pounds," she says.

Charlson explained that Victor’s case necessitated a vigorous chemotherapy regimen. "It was very arduous but it had to be done. Chemotherapy was an ‘insurance policy’ for Stacy’s long-term wellness and staying cancer-free," he says.

Limb salvage surgery, or the practice of replacing bones and joints affected by cancer instead of amputation, was performed by Hackbarth in March 2011. Victor required a complete resection to remove the tumor, and thanks to the chemotherapy, there were no live cancer cells. A metallic implant reconstructed her entire knee, femur and hip. Radiation therapy was not required. In September 2011, a second surgery removed scar tissue in her knee to elevate her mobility.

Hackbarth described the resection as "rather formidable surgery," but says, "Stacy is doing very well. She wants to use the reconstruction to maximize her abilities and do everyday activities. She motivates us."

Rehabilitation therapy has helped Victor advance to walking with a cane, with a barely noticeable limp. She says, "I’m getting faster. I have to keep pushing the leg, pushing myself to walk without assistance."

Victor also pushes herself with a weekly sand volleyball game. She used to play in high school, and has been with this team for five years. "It is quite difficult, but to me this is the best therapy," she says. "I’m doing something I love around people who are very encouraging and willing to let me test myself."

Hackbarth acknowledged Victor’s athleticism. "We don’t like our patients to run, but we want them to be as normal as possible."

Besides volleyball, a normal life for Victor includes her bank job, which she returned to in January 2012. Her wedding to Berg is back on schedule, set for Dec. 8. Additionally, the couple recently moved to Cedarburg, where they purchased a home.

"Last summer, when I had chemotherapy, I promised myself to go out and live when it was over. It’s catching up to me now," Victor says with a laugh. "After this year, hopefully things will calm down."

Now age 28, Victor admits that some days still get her down, that she can be disappointed by the limits of her lifestyle. But then she remembers her huge support network. "It’s great to have so many people who care."

That network includes her team of physicians, who will continue to monitor her. "We never say goodbye to our patients," Hackbarth says.

At nearly two years from Victor’s diagnosis, "We’re in surveillance mode," says Charlson. Every three months, CT and PET scans verify that the cancer hasn’t returned to the initial site or metastasized to another location. At three and four years after her diagnosis, the scans will be scheduled every four to six months. By year five, Victor’s visits will be on an annual basis. "By then, there are slim odds of recurrence," Charlson explains.

"I’m proud of myself for getting through this," Victor says. "My medical team is the best. I am very grateful."

Charlson, however, feels fortunate that Victor chose to work with them. "Stacy is the center of this team. She is doing the hardest work, and she is doing a fantastic job."


This story ran in the October 2012 issue of: