I remember sitting in my office in the fall of 2000 and experiencing a sharp chest pain. I was a general manager, responsible for a software and services company with approximately sixty staff and branches in Los Angeles and Chicago. A high stress position, or so I thought, and perfectly suited to give one a heart attack.

I had been fighting high blood pressure since the ‘80s, and lately my readings had been out of control despite my daily blood pressure pills. I consulted several friends in the office and they advised me to seek out a cardiologist. A name was provided to me for one of "the best" in southern California and an appointment was quickly set up.

What happened to me next was in fact very typical of the experience of most Mesothelioma patients. The symptoms of pleural (chest) Mesothelioma are often confused with other illnesses and a wild goose chase is the normal result. Not all Mesothelioma cases appear to progress at the same rate, but for patients with extremely aggressive tumors this delay can be deadly. I have come across cases where six months or more were wasted before a correct diagnosis was finally made and this can destroy any chance for effective treatment and may be partly to blame for the shockingly short survival times after diagnosis that many victims experience. In retrospect I have come to believe that my discovery of the cancer was coincidental and extremely early. It allowed me the luxury of selecting my own treatment path.

I underwent a battery of tests. I was placed on a treadmill to evaluate oxygenation while wired up to an Electrocardiogram or ECG machine. X-rays and an ultrasound revealed a slightly enlarged heart and "fluid" around the exterior of that organ. Blood and urine tests were done as well and although these contradicted the physical examination, the outcome was a diagnosis of "congestive heart failure" and a changed prescription for control of my high blood pressure.

I’m not sure how to characterize this outcome since it was both wrong and also a blessing in disguise. The prescription for a "beta blocker" caused me to retain fluid in a condition called edema. This was quite severe and made me gain over fifteen pounds in a short time, causing me major distress. I was already depressed that I might have to live my life with a diseased and failing heart, only to find myself swelling up like a balloon and developing severe breathing problems and a cough. A referral to a pulmonary specialist, Dr. Shukla, was set up and the prescription was altered and a diuretic (to purge excess fluid) was given instead. My trip to the pulmonologist revealed that I had contracted a mild case of pneumonia so I also found myself on an antibiotic.

Things were improving, however, because Dr. Shukla, a specialist in lung ailments, immediately noted that he didn’t believe I had "heart failure". His analysis of my body fluids, blood and urine, showed no traces of the proteins that are shed when the heart muscle is damaged. I now believe that he guessed immediately what I had but remained cautious and silent about it until he could be sure.

By early spring 2001 my pneumonia was gone. My breathing problems continued, however, and I found myself sitting upright on the couch at night trying to sleep because lying in bed was uncomfortable. Also, the X-rays continued to show fluid next to the lung in the intra-pleural space. The lung is covered with a smooth, slippery lining and rests in the chest cavity in a space covered in the identical lining, called Mesothelial tissue. This space is supposed to allow the lung to shrink and expand with each breath and its silky smooth texture is designed to reduce irritating friction. There shouldn’t be any fluid in that space under normal circumstances. He showed me that my breathing difficulties were caused by a partial compression of the right lung caused by the intruding fluid, and he suggested that I have a needle thoracentesis, the extraction of fluid from the thorax or chest cavity.

Now, I will confess that this was far from pleasant but it paled when compared to what I had done to me later. For now, however, a needle long enough to drill for oil in Alaska was placed between two ribs and over a liter and a half of fluid was drained out. I was sent home rather groggy and disgruntled but otherwise still unaware of what I was facing and therefore still unfazed by developments.

I have to give Dr. Shukla credit for being persistent and advocating for me because after the test showed "no sign of pathology" in the pleural fluid, I was happy to get back to business as usual and forget about my strange case of "heart failure" followed by pneumonia. Six weeks after the thoracentesis I received a call from him.

"Aren’t you going to come in for another X-ray?" he asked.

"Do I need one?" I responded.

"Well," he said, "we should check to make sure the fluid hasn’t come back again, just to be safe."

I agreed, even though I was relatively symptom free at this point, and this probably wound up saving my life. The X-ray revealed the fluid had returned and he immediately, yet quietly, encouraged me to "check it out" by undergoing a biopsy. He sent me to a thoracic surgeon for a procedure called a thoracotomy and thoracoscopy. This procedure turned out to be no small matter since several incisions were made into the chest, the lung was deflated and a fiber optic scope was inserted to examine the lung, diaphragm and the rest of the pleural cavity.

I should have been suspicious when I got an reasonably prompt appointment with the surgeon, Dr. Joyo. During the consultation my wife and I began kicking around dates several weeks into the future but he was having none of it. "How about tomorrow?" he asked. Again, I was fortunate to be in the hands of a doctor who suspected correctly what I had and knew that urgency was of the utmost importance. If I was to be helped no further delays could be tolerated. Early detection is difficult enough with this cancer but chasing false diagnoses or being in the care of doctors who don’t understand the urgency can be very hazardous to the outcome.

The date was June the 8^th, 2001, a Friday, and immediately upon the conclusion of the surgery, Dr. Joyo went to my wife and told her that they had found a number of white bumps or nodules on the lung, on the chest wall, the pericardium, and on the diaphragm. He asked her if I had ever been exposed to asbestos and although he refused to name the condition for certain until more tests could be run, he thought it might be malignant. Tissue samples were examined at my local hospital and also sent to the Mayo clinic for a second opinion. He remained non-committal, however. A diagnosis of Mesothelioma isn’t something you want to announce in error. Dr. Joyo knew that when my wife investigated that name, she would be presented with the worst of all outcomes. Before sharing such a diagnosis with us he wanted to be sure. She clung to the hope that it might be an infection, allergic reaction or a result of the pneumonia, but he quietly discouraged her from these sentiments. Less than a week later we learned that the diagnosis had been confirmed.

I was devastated. For my recovery from this major surgery I was encouraged to walk along the hospital ward as often and as far as I could manage. I did that, sadly wandering down the hallway contemplating the life I felt I would no longer have. I remember pausing at the large glass window of the thoracic surgery floor of my Newport Beach hospital and staring at Newport harbor and the Balboa peninsula. The sun sparkled on the water in the afternoons, dancing on the palm trees, taunting me with the knowledge that shortly all this would be lost to me forever. I wanted more than anything for this to be a bad dream, from which I would awake to find my life intact and many more years ahead of me. Sometimes I would grow angry at all the wasted hours and days of my life spent hanging around the house or on the couch. That was time I could have spent walking the beach, dining near the ocean or watching sunsets with my wife and family; time I could never recover now. In short, I was feeling good and sorry for myself. Even so, I couldn’t get myself to cry and, for reasons that I still can’t explain today, I never quite accepted my upcoming demise as being a forgone conclusion.

I was in the hospital for six days. For the first several days a nifty rubber tube sprouted out of my chest attached to a vacuum-sealed chest drain container. This went with me whenever I went to the toilet or took my walks. Sleeping with it was a huge pain since I could only lie on my left side. This container was partially filled with blue liquid that gradually was displaced by the bloody yellowish fluid oozing from the hole between my ribs. I learned that during the thoracotomy the tumor had been "treated" with a procedure called pleurodesis; manual abrasion with a scouring pad and an application of talcum powder. The purpose of this was to prevent the accumulation of more fluid. The scraping of the tumor and the talcum powder would irritate the surface of the affected tissue, causing it to scar over and stick to the ribcage. This would then deny the tumor a place to ooze its fluid, hopefully negating the need for further thoracentesis procedures.

Opinions on this procedure are mixed. This measure is strictly palliative (treating a symptom) and not curative. It does nothing to stop or defeat the tumor but is commonly performed only to stop the weeping of fluid into the chest cavity that is compressing the lung. The intention is to make the patient more comfortable while waiting for the inevitable. I don’t expect much thought is given to how it might affect the growth of the tumor or later attempts to remove the tumor with additional surgery. Those thoracic surgeons who later decide to try more drastic surgery, like pleurectomy and decortication (P&D or the total removal of the pleural lining from the heart, chest wall, lung and diaphragm) frown upon the procedure because it makes their job so much more difficult. The other major surgical protocol is extrapleural pneumonectomy (or EPP, the removal of the pleural lining as above, with the additional removal of the affected lung). In my case, in the areas where the pleurodesis had been performed, the lung and the chest wall were later found to be stuck together, making the surgery harder and adding hours to an already lengthy and highly risky procedure.

Pleurodesis is, however, the "standard" approach that most thoracic surgeons are familiar with when confronted with large amounts of effusion from a tumor of unknown etiology. The expectation that it might hinder further life-saving surgery or possibly stimulate more aggressive tumor growth isn’t universally accepted or understood yet. Until the medical community can agree on a "gold standard" of treatment for Mesothelioma, biopsy procedures may continue to include pleurodesis, for better or for worse.

I went home and returned to the hospital to have stitches pulled less than a week later. By this time, my wife and I had a thousand questions and we were treated with care and honesty and given sound advice by the surgeon and his intern. Yes, I did have Mesothelioma, and no, there was no mistake. Mayo clinic had confirmed the finding. I had the epithelial variety, which was better than having sarcomatous or mixed variety. Epithelial patients lived a few months longer than their less fortunate fellow sufferers. The best course of action was to seek out a surgeon who would perform either of the above surgeries, followed by some form of adjuvant (accompanying) treatment, like chemotherapy and/or radiation. By then my wife and I had spent time on the Internet and had a number of names in mind. Yes, we were told, I should seek out these doctors and try to get accepted for treatment. No, there were no cures guaranteed but progress was being made and the main thing now was to stay alive until a cure might be found.

As a memento of my surgery I was handed a set of biopsy images of the tumor taken during the thorascopy procedure. The pictures showed a white bumpy coating scattered over the affected areas (see figures 2 and 3 above). It looked somewhat like bread mold, with a fuzzy indistinct appearance. When I compared these pictures to what I saw and read about on the web, I felt certain that my tumor was still relatively early. I asked the surgeon what he felt about this and he agreed. We were somewhat encouraged by this but what sealed the discussion was my appointment with Dr. Shukla who made it quite clear that I should "get my butt into surgery ASAP." Surgery was the best and probably only hope I had.

© 2000-2006 Klaus A. Brauch. All rights reserved.