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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