Stories of Hope

Karen Parles, New York Diagnosed in 1998 at age 38 Nonsmall cell lung cancer, Stage IIIB “The only thing that truly relieved my anxiety was the passage of time.”

When Karen Parles was diagnosed in January, 1998, with stage IIIB NSCLC, she was shocked. She was only 38 years old, had never smoked and was happily married with two young children.

In the fall of 1997, I developed a chronic cough that was initially diagnosed as pneumonia. After a course of antibiotics, a follow-up x-ray showed that the "pneumonia" -- a 1.5 cm nodule in my right lung -- was still there. Further testing (including a chest CT) was inconclusive, and I was advised to "watch and wait" to see if the nodule grew. Thankfully, one doctor argued for a more aggressive approach and recommended that I have a biopsy to determine just what the nodule was. After undergoing thoracoscopy, I learned that not only did I have lung cancer (adenocarcinoma), but that the cancer had spread outside my lung into my pleura -- the membrane surrounding the lungs. I was told I was inoperable and given a bleak prognosis. While I was devastated by this news, I also decided that I had to collect myself and figure out how to increase my chances for survival. I focused on finding the best medical care available, learning as much as I could about lung cancer and taking good care of myself -- both physically and mentally.

Through a pulmonologist friend, I discovered that I qualified for experimental surgery despite my advanced disease. My treatment consisted of 4 rounds of chemotherapy (Taxol and carboplatin) followed by an extrapleural pneumonectomy -- removal of my lung and pleura. The most difficult part of chemotherapy for me was the cumulative fatigue -- some days I couldn't meet the physical demands of caring for young children and had to rely on friends and family to help out. Recovery from surgery was slow but steady. Emotionally, the most stressful time for me was following my surgery -- my treatment was over, yet I faced a high risk of recurrence. I dreaded the follow-up scans and worried that every ache and pain might mean my cancer had returned. The only thing that truly relieved my anxiety was the passage of time. I am now 4 years from my diagnosis and continue to be grateful for each day.

After her diagnosis, Karen searched for lung cancer information on the Internet. She found fewer online resources for lung cancer relative to the other major cancers. Much of what she did find was "buried" in general cancer sites. While recovering from her lung surgery, Karen decided to use her skills as a librarian to create a centralized directory of Internet resources for lung cancer. Lung Cancer Online is designed as a clearinghouse of information and resources for lung cancer patients and their families. The site is easy-to-use with links to reliable medical information. Roman Perez-Soler, M.D., a leading thoracic oncologist, says that because she's a patient, Karen knows "how to emphasize certain topics that clinicians might consider secondary, but are very important to patients — their quality of life, the impact of their disease on friends and family, and the psychological aspects of their illness."

Through my work with Lung Cancer Online, I have learned that patients are interested in finding high quality lung cancer information and in connecting with others who are surviving with their disease. Lung Cancer Online provides comprehensive coverage of lung cancer, including links to resources that facilitate patient communication through in-person support groups, one-on-one support (the ALCASE phone buddy program) and online support lists. The connections I have made with other lung cancer survivors are invaluable -- they have given me hope and enriched my life.

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Karen's work as Editor of Lung Cancer Online is a volunteer effort. She keeps in contact with many lung cancer survivors through her site and by telephone (she is an ALCASE phone buddy). Karen is a co-list-owner of the Association of Cancer Online Resource's (ACOR's) lung cancer support lists. She serves on health policy advisory groups, including the Consumer Advocates in Research and Related Activities (CARRA) program of the National Cancer Institute.

Karen can be contacted at kparles@lungcanceronline.org