Daily Archives: August 2, 2009

Clues before a missed diagnosis

When I tell people that I have lung cancer, they almost always ask me if I smoked. Many people with lung cancer are offended by this question, but I view it as an opportunity to educate. There is no getting away from the fact that lung cancer has been stigmatized by the perception that it is a disease of smokers (hence, brought on by their own risky habits). I don’t mind being an ambassador for an unexpected face of lung cancer: young, never-smokers. Nor do I feel that anyone deserves to have lung cancer, whether or not they smoked.

The second question is usually along the lines of “how did you know?” and “what were your symptoms?”. People are genuinely curious about (and afraid of) cancer, so if you are willing to talk about your own experience, they really do want to know. And why not. If you tell someone what to look for, they may someday avoid the tragedy of a delayed diagnosis.

I am certain that I would have been diagnosed earlier had I been a smoker.  Even though I was developing symptoms that were suggestive of lung cancer, my status as a never-smoker meant I was in a low risk category.  It would take somebody who could think outside the box to consider that possibility.

Unfortunately, a much greater tragedy had some bearing on my delayed diagnosis as well.  In the late spring of 2000 I went to see Fred Rimmele, my doctor at that time, regarding progressive weakness in my left hand and arm. Fred was a relatively new MD and I appreciated his enthusiasm, his curiosity and his energy.  I felt that he took my concerns quite seriously.  He ordered a nerve conduction test and made an appointment for me with a neurologist as well.   He also ordered a chest x-ray.  His notes from that day read  “I would like to do a chest x-ray to make sure that there are no chest lesions which would be very unusual in this young, non-smoking woman, causing brachial plexus problem.” The chest x-ray was clear–but Dr. Rimmele was aware of something that I had no inkling of.   It is possible to have early symptoms from a paraneoplastic syndrome:  an immune response on the part of the body to substances produced by the tumor.   One manifestation can be muscle weakness.

No clinical reason was found for my symptoms although I continued to follow up with a neurologist.

In June of 2001, I went to Dr. Rimmele with another complaint–nodules on my fingertips.  He sent me to a rhuematologist who also ordered a chest xray.  Once again, I was unaware that digital clubbing was another possible indicator of lung cancer.  This x-ray appeared clear as well.

I had not yet developed shortness of breath, but I believe that it would have been only a matter of time before Dr. Rimmele connected the dots.

And then the unimaginable happened.  Fred Rimmele was a passenger on one of the planes that crashed into the Twin Towers on 9/11.  It was unfathomable that he was gone: such a good guy and a fine doctor as well.  I was devastated.

At this time I was referred to a new general practitioner at the same clinic.  She was gentle, seemed caring, but was terribly complacent.  And in the end–I think she was lacking in imagination.  It is still hard not to imagine how much earlier my cancer could have been caught had she not waited so long to order a CT scan.

In April of 2003 I came to this doctor with a complaint of shortness of breath. There were also specks of blood in my sputum when I coughed (hemoptysis). She ordered a chest x-ray which reported that my lungs appeared to be clear.  In the absence of another explanation, she diagnosed me with adult onset asthma.  I neither wheezed nor had asthma attacks, but my PF’s (peak flows) were low. Even as I developed a chronic cough, hoarseness, and recurrent infections, no other cause was considered.  For two full years I was (mis)treated for asthma.

By January of 2005 I had begun to feel fatigued and unwell in general.  When I lay down at night, my lungs made an awful rasping noise.  I began to have trouble swallowing.  Finally, in March of 2005, I was coughing up a copious amount of blood.  I saw the on call doctor in the clinic on Friday, March 18th.  He felt I had a virus and sent me home.  By the following Monday I was much worse and returned to the clinic to see my doctor.  She ordered a chest x-ray which showed what appeared to be pneumonia in my left lung.  After three weeks of antibiotics and two more x-rays–it was clear that something else was going on.  The radiologist’s report read:  “The lack of change over approximate 3 weeks raises concern for alternate diagnoses, such as atypical pneumonia, abscess, bronchoalveolar cell carcinoma, or a lung mass”  A subsequent CT scan found a large consolidated area that it said was “suspicious for neoplasm”.

I was not familiar with the term neoplasm, but the grave look on my husband’s face indicated the severity of the situation.  I was admitted to the local hospital where I was treated with intravenous antibiotics as we awaited a biopsy.  I also began to educate myself about lung cancer:  just in case.