Lorie Vincent Was Told Cancer Would Kill Her in Months

By KAWANZA NEWSON

Lorie and Mark Vincent walked along Waikiki beach holding hands, barely noticing the sand and crowds around them. They’d just bought a two-bedroom vacation place overlooking the ocean.

Mark would visit later with the children, perhaps another wife.

Lorie was dying.

She had a rare and aggressive form of uterine cancer. It had spread into her lungs, and doctors warned she’d die within months.

The couple spent their week in Hawaii being grateful for marrying young and having their children early. They talked about the strength of their faith and the business they’d opened just that year.

It’s nearly five years later, and Mark hasn’t been back.

After four surgeries, one course of radiation and three courses of chemotherapy, Lorie is alive and doing well.

Doctors say her response to treatment is even rarer than the disease itself.

"It surprises me, in general, that every time we do something, she just gets better," said Paul LeMarbre, her oncologist at Waukesha Memorial Hospital.

"I wish I could say that everyone responds well to treatment, but the sad truth is that success is reserved more for the minority of people," said Howard Bailey, an associate director of clinical research at the University of Wisconsin Comprehensive Cancer Center who is not involved in Lorie’s care.

Mention uterine leiomyosarcoma and some doctors may briefly pause before speaking. Though endometrial cancer, which usually begins in the lining of the uterus, or endometrium, is the most common gynecologic cancer in the United States, cancer within the smooth muscle of the uterine wall is not.

It’s the ugly duckling to its benign sibling, the uterine fibroid that causes severe pain and heavy menstrual bleeding in women. And unlike breast or prostate cancer, there aren’t an abundance of survivor stories about people diagnosed with uterine leiomyosarcomas.

"To date, there are very few chemotherapy agents that have demonstrated any activity against the disease," said Martee Hensley, a medical oncologist at Memorial Sloan-Kettering Cancer Center in New York who is one of the nation’s leading experts on treatment of the condition.

"The best chance to treat it is to remove it surgically and hope like heck it doesn’t spread elsewhere," UW’s Bailey said.

LeMarbre had been researching methods to improve cancer chemotherapy treatment since he graduated from medical school in 1974. Over the course of his career, he’d tried various combinations that included tamoxifen, which blocks the effects of estrogen, a hormone that can fuel rapid cell growth and certain cancers.

The treatment has worked for women with advanced breast cancer and cervical cancer and also on some lung and bladder cancer patients, he said.

When Lorie arrived in his office in December 2001, she’d already had surgery to remove tumors from the right bottom of her lung and part of the middle of her lung. She now had two more tumors in her upper right lung.

During earlier discussions, daughter Autumn, then 12, had voted that her dad not remarry. Son Zach, then 10, thought it would be fine. Regardless of what happened, Lorie felt confident her family would be taken care of.

The Vincents moved to Mukwonago from Elkhart, Ind., in June 2001 to be near Lorie’s family.

She was now prepared to die.

"I’m a realist," Lorie said. "I knew I was going to die, that I probably had about six months, so I asked (LeMarbre) if hospice care in Wisconsin was the same as in Indiana, you know, thinking I’d go in there being all big and tough and brave."

LeMarbre listened closely to Lorie and then looked her in the eye.

"I think I can help you," he said.

Reluctant to see oncologist

Lorie married Mark when she was 20 and he was barely 21; they’re now both 42. Within three years, they had Autumn, now 18, and Zach, now 16.

She had been diagnosed with fibroids in 1998 and eventually had a hysterectomy. It was the uterine tissue tested from that procedure in August 1999 that unveiled the cancer.

She reluctantly agreed to see an oncologist. Her mother had insisted, and Lorie didn’t want to disappoint her.

Lorie was told that her cancer would spread to her lungs and that she’d have no symptoms until the end, when she would cough and have difficulty breathing.

Now, in December 2001, she listened as LeMarbre described his treatment plan that used four standard chemotherapy drugs and tamoxifen.

"I was more interested in quality of life than quantity," Lorie said. "At this point I was just coughing and I still wanted to hang out with my family. I knew that I didn’t want to be sick with chemo and then die anyway."

She was so skeptical of his plan that LeMarbre suggested having surgery and letting him test the treatment on the sample of her tissue to see how his protocol would work.

Although she described the previous lung surgery as "the nastiest surgery I ever had and wouldn’t want to go through again," she scheduled an appointment with a surgeon on Jan. 3, 2002.

But once she reached his office, the news she got was not good.

There’s no way to do this surgery now, he said. Her tumors were pretty much on course to end her life she now had 21 tumors, an increase from just two tumors about three months earlier.

Lorie called LeMarbre and asked to hear about the protocol again.

"He was very honest, said this (decision) is totally up to you, but if you do it, you could die from this because you have a lot of tumors," she said.

She began the four-drug regimen plus tamoxifen in January 2002.

Ready to accept fate from God

Design for Ministry, a firm that consults religious organizations, was the soul of Lorie and Mark. In 2001, they began the business as a way to share their ministry.

Though Mark traveled often, he never left Lorie alone during her treatments.

He showed up with a cactus, not flowers, after her first surgery. A cactus didn’t die, he told her.

Now, they prayed together and agreed that they would again accept whatever fate God had for them.

"It was also sad we had decided to live well in the best sense of the word when we were staring death in the face," Mark would say later.

Lorie cried the day her hair fell out. She was extremely fatigued, couldn’t walk and couldn’t eat. She lost 20 pounds.

But six months after beginning treatment, the tumors disappeared.

In December 2002, two more tumors appeared on the upper right side of her lung.

LeMarbre tried treating her with radiation and the chemotherapy drug Gemzar. Her white blood cell count plummeted, and she was more susceptible to infections, but her tumors were shrinking. By mid- March, they were gone.

Lorie changed her habits.

She ate better and spent 40 minutes daily on her treadmill.

In September 2003, she weighed 146 pounds, down from 217 when she’d first met LeMarbre. It was because of her excellent lung function that a surgeon agreed to remove tumors found in her lower left lung that month.

But despite more chemotherapy, she needed more surgery last October to remove tumors from her upper left lung.

Mark arrived at the hospital with boxing gloves, showcasing a "Round 7" and a black-and-white hooded boxing robe.

Lorie had survived seven treatments for her disease, he said.

Earlier this month, she had a checkup and was still cancer-free.

She and Mark plan to vacation in Hawaii with their children in April.

It’s the perfect spot to celebrate Autumn’s high school graduation.

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