My husband and I got married in August 2009. In December I developed a cough. We went on our honeymoon in January and by the time we returned, my cough was still persistent and I had swelling in my abdomen. I scheduled an appointment with my primary.
They performed a chest x-ray, couldn't really see anything, prescribed me with Prilosec and said that my abdomen was possibly swollen from a pulled muscle from exercising. The doctor called me the next day to say she took a closer look at my x-ray and could see a little bit of pneumonia-antibiotics given and f/u appointment scheduled for the next week.
The "pneumonia" was worse, at my follow-up, different antibiotics and breathing treatments prescribed. Next chest x-ray showed improvement-everyone assumed that was the end of it.
At the end of February 2010, I went back in the doctor concerning something else. I mentioned at that time that I was still coughing quite a bit since my pneumonia, she said that is normal, it can continue up to 6 months.
On April 25, 2010, the coughing was so bad, I called again and they had me come in. Chest x-ray had her concerned, sent for a CT scan. This began the numerous quizzical looks, followed by questions of if I smoked and repeated statements of "well, you are healthy, young and never smoked, hmmmm." The results came back abnormal and I was referred to a pulmonologist.
We met with the pulmonologist on April 29, 2010 and he showed us the 4 cm mass on my right lung. I was 30 years old and had been very healthy up to this point. I naively asked what he thought it could be. The doctor said "we assume it is cancer until we prove otherwise."
He scheduled me for a CT guided biopsy the next week. The results came back negative for everything, including cancer. I was then scheduled for a bronchospy May 15-all the results again came back negative for everything tested.
My pulmonologist continued to prescribe high dose cough medicine as well as anything else he could think of to try and get rid of this unknown mass. He referred me to a rheumatologist, thinking I might have an immune deficiency disease. After more bloodwork, CT scans, and doctors visits, all was still inconclusive.
On July 21, 2010, we met with a cardio thoracic surgeon who scheduled me for a lower right thoracotomy and lobectomy on Friday July 23. He said what most everyone else said- "You're so young and healthy, I'd be surprised if it was cancer." When I woke from my surgery, my husband had the unpleasant task of telling me that I did in fact have cancer, NCSLC-Adenocarcinoma. I had never even had stitches before this surgery, let alone chest tubes!
After being in the hospital for a week, as we were discharging to go home, we got the results that it was Stage IV NSCLC. The doctor just kept saying, this is really bad, I'm so sorry.
Since then, I started a clinical trial with Tarceva and Avastin on September 1, 2010. All was stable in CT scan up until recently. Because my tumor was removed during surgery, my oncologist basically looks for new growth and measures the pleural fluid that is in the space where my lung was. We received the results of my last CT on April 20, 2011, after the previous one showed fluid around my heart. There is more fluid, I have a pericardial effusion. There also appears to be more fluid on my lungs as well as possible new nodules-all under 3 mm, so said a PET would not help to determine. The plan is for me to have a pericardial window done in a few weeks, then begin Carboplatin and Taxol.
I am very lucky to have a wonderful, supportive husband, as well as family and friends to make this disease more bearable. I have been reading on the forums since my diagnosis and finally got the courage to put my story out here! Thanks for "listening."
Sara in Kansas
Sara in Kansas
31 years old at diagnosis-never smoker, former runner
Treated for pneumonia Feb. 2010 due to prolonged cough, sent for CT scan 4/10, abnormal, 4cm mass on right lung. Pulmonologist 4/29/10, CT guided biopsy 5/10-negative for cancer, bronchoscopy 5/10-negative for cancer. Numerous blood tests later, referred to Cardiothoracic surgeon 7/10. 7/23/10-lower right thoracotomy with lobectomy-diagnosed Stage IV NCSLC, Adenocarcinoma. 9/1/10 Started Tarceva, Avastin. 4/20/11-Tarceva and Avastin stopped, pericardial effusion. 5/12/11-surgery for pericardial window, left lung collapsed during surgery, "extra" chest tube put in. 5/24/11start Taxel, Carboplatin. 8/2/11 End Taxel, Carboplatin, on a break until CT scan end of Dec shows progression. Jan 2012 clinical trial at KU Med. April 2012, progression showed with new spots on liver, left lower lung, right breast, and cancer in cervix. New treatment of Alimta and Herceptin starting 4/17/12.