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Few Patients Understand Their Prognosis

Just reported is a Memorial Sloan Kettering Cancer Center and Cornell University study showing but 5% of terminally ill cancer patients understand the gravity of their disease and prognosis. Moreover, only 23 percent of these had a discussion about life expectancy with their doctor.

At first pass, I questioned the validity of the percentages.  They were so low they bordered on unbelievable. This had to be mainstream press sensationalism at work! Then I spoke with an expert, and she convinced me I was not a typical lung cancer patient. The fact that I read about my disease after diagnosis was a big tell. Many do not.

My education about lung cancer started the first night of my diagnostic hospital stay. The lesson delivered ⎯ a very pragmatic and frank discussion with my general practitioner. His words characterizing my prognosis were "slim odds." He didn't want me to give up but wanted to ensure I knew the enemy.

After discharge from my diagnosis hospital admission, I burned up the Google Search Engine reading everything I could about lung cancer. In 2004 there were not a lot of sources, but there were enough to scare the living daylights out of me.  Research revealed a very low probability of living 5 years even with effective treatment. My bravery evaporated.

My wife recalls that time. She reminded that my inquisitive nature departed with bravery. Martha asked questions. These explored diagnosis, treatment possibilities, and prognosis. I mostly stared at the clock in the consultation room. Or tried to change the subject.

My oncologist was frank. He said even with successful surgery, I had high odds of reoccurrence. When tumors appeared after pneumonectomy, he was down to chemotherapy to combat my lung cancer. Chemotherapy would buy time but it wouldn’t eradicate. Time purchased allowed for CyberKnife technology to emerge that was a surer kill. But treatment opportunities were explored because Martha was persistent. After a year of surgical mayhem and two years of Taxol Carboplatin hardened with Tarceva, I was barely along for the ride.

Sure, I knew my prognosis and life expectancy probability but knowledge did not empower me; it empowered Martha. So maybe the study numbers are low because patients understand their dire straits. Maybe we know and are afraid to talk about it.

In case you are wondering, lung cancer is deadly. Mostly because it displays few symptoms and is often diagnosed at late stage. The treatment tool kit for late stage lung cancer is largely empty. Why? Now that is a good question; one deserving of academic study. I’ll start.

Let’s hypothesize that lung cancer is a self-induced disease ⎯ people give it to themselves. If this is true, why should society invest in new diagnostic or curative means? As a logical extension of the hypothesis, society should never invest in curing maladies that are self-induced. How is taxpayer funded research for HIV/AIDS by the National Institute of Health to the tune of $3 billion a year explained? It is self-induced. Some will assert that a proportion of HIV/AIDS patients get the affliction accidentally. Yes, and some proportion of lung cancer patients are never smokers. But, drug abuse is completely self-induced and it garners just over $1 billion in yearly research. In the same data year, lung cancer was allocated but $225 million. No research for self-induced hypothesis fails.

Let’s construct another hypothesis: society funds diagnostic and curative research for diseases that kill the most people. Seems reasonable. Scarce resources ought to flow to afflictions that take the most lives. Let’s examine the data. In 2012, HIV/AIDS claimed 12,963 deaths according to the Center for Disease Control (CDC). In that same year, lung cancer killed 157,425!

Drug abuse is now anointed our national pandemic. Indeed prescription opioid overdose is “raging through the country.” CDC drug overdose deaths amounted to 38,538 in 2014 but in that year lung cancer deaths were 158,080. Lung cancer is our pandemic. It has been for a long time. The more-deaths-the-more-funding hypothesis is toast!

Frankly, I’m getting tired of the medical research community squandering precious dollars studying what cancer patients think, feel, or understand. What is far more relevant is how to find, fix, and finish lung cancer.

Stay the course.

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