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Why "He told me I have a year to live" Makes Me Grit My Teeth: You (the Patient) are Not a Number!
Tue, 05/05/2009 - 05:22
Author
Dr Pennell

Last Friday I saw a patient in clinic who was referred to me after presenting to the emergency room with shortness of breath. He has a large pleural effusion, and eventually needed a thoracoscopic surgery to drain the effusion and pleurodese the lung (this eliminates the space around the lung so no fluid can collect there).

After his pleural fluid came back positive for NSCLC, the surgeon who did the VATS told him (while still half-asleep in the recovery room, no less) that he "had a year to live, and to get his affairs in order".

This happens at least once a month, sometimes more, and nothing makes me want to call up some poor ER physician or surgeon and rant at them more than this type of hurtful and misleading comment. OK, deep breath...

Yes, the median overall survival for metastatic non-small cell lung cancer (NSCLC; or extensive small cell lung cancer for that matter) is about a year. But what does that really mean to an individual patient? Some people lay it out as an average: "Well, on average you'll live about a year." Aside from being mathematically wrong, who are you, Nostradamus? Unless you can look into a crystal ball, please don't go around pronouncing life spans.

"Get your affairs in order" is another favorite of mine. Sure, it is important to know that metastatic NSCLC is not curable, and there ARE indicators that can suggest to an experienced clinician that someone may die sooner rather than later, but these types of discussions really should be left to people who have them all the time!

OK, let's take a look at where this whole "12 months" number comes from. 12 months is more or less the median survival from a number of phase III randomized clinical trials of chemotherapy for patients with metastatic NSCLC. For example, the ECOG 4599 trial, that led to the approval of Avastin with chemotherapy in advanced NSCLC, had a median overall survival of 12.3 months.

The median is the cutoff point where 50% of some predetermined event has occured. For overall survival (OS), it means that 50% of the patients on a trial have died and 50% are still alive at that point. For the ECOG 4599 trial, half of the patients on the trial were still alive 12.3 months after enrolling in the trial. So you, as a newly diagnosed patient with NSCLC, about to start chemotherapy, are going to live about a year, right? Maybe, but much more likely you will live longer or shorter than that.

When I am asked about prognosis I always ask "Do you want to hear numbers?". And about half the time the answer is yes (more from the family, but often the patient doesn't want to hear it). I then preface things by saying "You are not a number" and that nothing I say will in any way predict how long that patient will actually live. The median survival is a research tool used to compare one treatment to the next. More useful is to speak of ranges, or my favorite, the best case scenario/worst case scenario.

Worst case scenario: Some patients with metastatic NSCLC will have very aggressive disease and will become ill very quickly, within a few months. Many of you may have had loved ones who fit this bill, and to you 12 months would have sounded fantastic.

Best case scenario: Some patients will have more indolent disease, or will get a great response to chemotherapy, or will go on Tarceva and have their cancer melt away, and stay that way for a long time.

Of course, most people end up somewhere in between. Here, look at this survival curve from the recently presented IPASS trial:IPASS OS curve

(click picture for full size image)

As you can see, the median survival is 18 months. Pretty good, a full 6 months longer than 12 months, but still doesn't sound so great to your average patient. But the most important part of the curve, the one I ask newly diagnosed patients to focus on, is what is called the tail. The tail of a survival curve is the far right part, the patients who are still alive for the longest time. If you look at the tail of the IPASS curve, you can see that about 40% of patients were still alive 2 years from diagnosis. In the tail from the ECOG 4599 curve, at 3 years 15% of people or so were still alive.

Dr. West's recent post about his sense that NSCLC patients were living longer really made me think about this topic. He also commented that 2-year survival rates were being reported more often these days, a sign that the tail of the curve, so to speak, is getting higher. That tail is why we treat patients with chemotherapy, and why we try and put people on trials. That tail is why people like me can get up in the morning and face another clinic full of ill patients, who NEED us to give them hope.

I don't tell patients I want them to be average, or to live a year. I want them to end up in the tail of the curve, so that they end up like Dr. West's patient 5 years out and still doing well. Of course, (reality check) most patients don't do nearly that well today, but the tail keeps creeping up higher and higher and I care more about that than the median. Shoot, someone has to be in the tail, why not you?

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