Article and Video CATEGORIES

Cancer Journey

Search By

Why "He told me I have a year to live" Makes Me Grit My Teeth: You (the Patient) are Not a Number!
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?

Tags

Next Previous link

Previous PostNext Post

Related Content

Article
Advance directives are a powerful way to take control of healthcare choices. These documents allow you to outline preferences for medical care and specify end-of-life wishes. These documents can also be a way to appoint loved ones who you would like to help with these decisions, such as a healthcare proxy (someone to make decisions on your behalf, if you cannot). As cancer treatments can involve aggressive treatments and/or complex medical management, having advance directives ensures that your desires regarding treatment options and end-of-life care are clearly communicated. 
Image
2024-25 patient perspectives header
Article
Tell your story and help us help others! Apply online now for this paid opportunity. This program gives a voice to those who have experience in participating in a clinical trial for a cancer diagnosis. Your voice helps to educate and advocate for others who are in or who may be considering a clinical trial.  We want to hear from you!
Image
Foro de Pacientes de Terapias Dirigidas de Cáncer de Pulmón
Video
¡El vídeo completo bajo demanda está disponible para verlo!

Forum Discussions

Hello Linda, my name is Alexandra Beneke, I'm the Outreach Manager for GRACE. Your willingness to share your experiences and knowledge with the cancer community is truly inspiring. Your dedication to...

Hi Bluebird,  Welcome to GRACE.  I'm sorry you're going through this scare and hope it's just inflammation or from an infection you didn't know you had. 

 

A CT would be...

Radiation + Brain Operation has just been discarded due to high risk. They will double Tagrisso dosis and then wait to see if it works, then try traditional Chemo. I would...

Hi and welcome to GRACE.  I'm sorry to know you are entering a new stage.  I'm not about to comment just now but wanted to let you know I see your...

Edit to say, we can't give advice but we can comment with views and facts.  :)

 

My first thought is to ask if she has been seen at a large...

Hi Barbro, Welcome to GRACE. I'm sorry you're worrying about this. We aren't able to give feedback on scan reports. Interpreting scan reports in this setting is not only unethical but...

Recent Comments

JOIN THE CONVERSATION
Tagrix FDA Approval
By mariachristian on
Hi Judy! It is so good to…
By JanineT GRACE … on
Tagrix vs Tagrisso
By Dipakchavan on
Hello Linda, my name is…
By AlexandraGBeneke on