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Lung cancer survivor working to empower others

07/10/04

Bowling Green woman seeks better treatments for, greater knowledge of ever-changing disease

Lori Monroe’s daughter Emily, 16, wears a button that reads "Cancer Sucks ... Lung Cancer Really Sucks." For the 45-year-old Bowling Green woman who was diagnosed with terminal lung cancer in September 2001, it has sucked away some of her ability to do uphill hikes. It sucked away valuable time with her children, Emily and Alyson, 13, while she endured three surgeries to rid both lungs of the disease. It sucked away about 60 percent of her left lung. And she worried that it would suck the life out of her. But Monroe persevered. Now she has one message she wants to get across to people, especially to those with lung cancer: Be your strongest and best advocate. "Keep pushing for better treatments," she said. "You don’t get a second chance at making another decision. Seek second opinions and third opinions." Monroe, who is nurse at The Medical Center, never thought of herself as a candidate for lung cancer. "I started smoking in 1979," she remembered. "I quit at the beginning of 1986 when I got pregnant with Emily." But people who don’t have any known risk factors can get lung cancer, too. "There’s an assumption that if you smoked, you created your disease. People assume that you are a smoker," she said. "I have bronchioalaveolar carcinoma. It’s supposedly not related to smoking. Doctors don’t know what causes it or where it comes from." Monroe’s ordeal began in September 2001 following a hysterectomy, when an X-ray found something in her lung. "I had no symptoms whatsoever," she said. "My doctor thought it might be pneumonia." Monroe began taking antibiotics, but the spot was still there after a second X-ray. Further testing revealed she had Stage IV cancer the most advanced type. "At first doctors said there wasn’t anything that could be done," she said. "Chemotherapy for lung cancer isn’t very effective. Doctors don’t usually do surgery for it because the life expectancy is so short. The choice was whether to start treatment at all." Monroe didn’t want to give up, though. She felt she had two very important reasons to live her daughters. "My biggest fear was of leaving the girls and not being ready to do that," she said. "You have to learn to have faith and trust and go on." Monroe sought a second opinion at Vanderbilt University in Nashville. Her oncologist is Dr. David Carbone, who specializes in lung cancer and is a professor at Vanderbilt’s Department of Medicine. Her surgeon is Dr. Mathew Ninan, assistant professor of cardiac and thoracic surgery. "At first, Dr. Ninan said he couldn’t do the surgery," she said. "He called me back later that night and said he’d do the surgery. He said he didn’t know if surgery could change anything for me, but he didn’t know if it couldn’t." Ninan had done some quick research on cases similar to Monroe’s and decided he wanted proceed with the operation. "Lung cancer is a changing disease that was seen as something that happened in older people, especially men who had smoked for 30 or 40 years," Ninan said. "The people who are getting the disease are changing. It is happening more and more in women who never smoked or who gave it up years before. ‘I smoked in college’ is the typical story. We don’t know why it is now more common in women" Of all cancers, lung cancer is the biggest killer, but it doesn’t get the same attention as others do, Ninan said. "It’s like we’re ignoring the elephant in the room," he said. "This is my life’s work. I’m not in this as a business-making enterprise. I want to get the best results for the patients." Monroe is also worried about ignorance of the disease. "There has been very little done as far as advocacy," she said. "We don’t have enough survivors to become advocates." Monroe had nodules removed from her left lung later in 2001 and began chemotherapy and an experimental drug to stop the tumors in January 2002. "My oncologist said that if it kept the cancer from spreading then it was very, very encouraging," she said. "All the cancer in the left lung was gone and the right lung was stable." Experimental drugs don’t work for all patients, Ninan said, but is an area that he said doctors will study over the next few years. "They’re more gentle than chemotherapy," he said. "They’re targeted to the tumor, (but) a lot of patients don’t respond to them." Then the drug company stopped supplying Monroe in October 2002 it thought the tumor in her right lung had been growing, she said. "They said they’re weren’t sure if they want to keep giving me the experimental drug, so I’d go week after week without treatment," she said. "I began to get nervous." In December 2002, she had another surgery to remove the nodule in her upper part of her right lung. She was cancer-free for 16 months. Then in April, when she went for a routine scan, Carbone found cancer in the upper part of her left lung. She couldn’t stand by and do nothing, so she had surgery to remove the nodules. Last month she had to spend time in the hospital for an air leak in one of her lungs, but it has corrected itself, she said. "My right lung is intact, but 60 percent of my left lung is gone," she said. "After having three surgeries, I’ve decided to wait and see on chemotherapy. I go in every two months for CT scans. There are new experimental drugs that are less toxic than chemo that stop growth to the tumor." Monroe said her doctors have been her saving grace. "They have helped me find new treatment and think out of the box," she said. "A lot of doctors and oncologists feel that there is no hope. They offered me a chance to fight." Ninan pointed out that it’s best to find medical professionals who are experts in dealing with aggressive cancer. "A lot of doctors don’t know much about this field," he said. "Don’t ignore small changes on an X-ray. If you have a persistent cough, you need to get it checked right away. Once this cancer has spread beyond a certain level, good results start decreasing dramatically." Since their ordeal, the family’s faith has strengthened. Living Hope Baptist Church has helped the family a lot, she said. "I remember going before the church and asking for prayer and doors opened," she said. "I lot of prayers have been answered. A lot of doors opened up because of prayer." She has also waged a big fight against lung cancer. Her efforts garnered her and Vanderbilt a Page 1 article in the June 29 issue of The Wall Street Journal. She started a support group at Vanderbilt and hopes to eventually start one in Bowling Green. She is enjoying life traveling with her daughters, although their activities have scaled back a little. "We eat a lot healthier," Alyson said. They worry about some of their friends, too, Emily said. "I have a lot of friends who smoke, and it’s scary," she said. Additionally, Kentucky leads the nation in lung cancer deaths, Monroe said, and a visit to Frankfort to meet with then-Gov. Paul Patton last year right before Lung Cancer Awareness Month in November didn’t allay their fears. "There were ashtrays all over and ‘No Smoking’ signs," Alyson said. But people were still smoking. Monroe then talked to Patton about promoting Lung Cancer Awareness Month for Kentucky. He said, ‘We have to protect the tobacco farmers,’ she said. "I wasn’t there to talk about tobacco. It’s all about economics." But Monroe isn’t bitter about her bout with lung cancer. "You get over the pain, but you don’t get over having cancer," she said. "You let that go unchecked and it will kill you." In fact, the dark-haired woman, sitting on a couch in her home with bare feet tucked under her, looks happy and healthy. She is living cancer-free once again. "I don’t think I’m at 100 percent, but I’m OK," she said. "I’m feeling very healthy. I’m still feeling good." Emily agreed. "Just look at her," she said, smiling at her mother. "She went skiing when she was on chemotherapy." The Wendy D. Wyrick Foundation will have a 5K Lung Run at 8 a.m. Aug. 14 at Keeneland Race Track in Lexington. The new non-profit organization was founded in memory of Wyrick, a Bowling Green woman who lost her battle with lung cancer at age 32. The foundation is devoted to raising awareness, educating the public and funding the research for treatment and cures for lung cancer. For more information about the foundation or the race, call Tami Dobbins at (859) 420-2030.

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