Cancer Patients And Doctors Struggle To Predict Survival : Shots - Health News After being diagnosed with cancer, people often ask one question first: "How long do I have?" Doctors usually overestimate the time, and patients often don't understand it's a range, not one number.
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Cancer Patients And Doctors Struggle To Predict Survival

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Cancer Patients And Doctors Struggle To Predict Survival

Cancer Patients And Doctors Struggle To Predict Survival

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Immediately following a diagnosis of terminal cancer, there is the inevitable question of how much time is left. A cancer prognosis is excruciating to receive and to give. As part of our series Living Cancer, produced with member station WNYC, reporter Amanda Aronczyk looks at how some doctors are trying to make this conversation a little easier for everyone.

AMANDA ARONCZYK, BYLINE: Heather Lake did not want to know her prognosis when she was diagnosed with stage IV stomach cancer.

HEATHER LAKE: I knew stage IV was just a matter of time, so I didn't want to know.

ARONCZYK: She didn't know, but her family did. She overheard her daughter on the phone telling a friend that the doctor gave her just four to six months to live.

LAKE: I say, you could have told me. Four to six months has passed. Next month is five years.

ARONCZYK: Heather Lake was given months to live five years ago. Now she thinks her prognosis was meaningless. And she's glad the doctor never told her.

LAKE: I think that would've killed me because I would have been dwelling on that. I wonder if today's the day I'm going to die. Oh, I don't even like to think about it.

TOMER LEVIN: These prognostic conversations drive patients and their families crazy.

ARONCZYK: Dr. Tomer Levin is a psychiatrist at Memorial Sloan-Kettering Cancer Center in New York. He says the first problem is just hearing what the doctor has said in the first place.

LEVIN: The person is very anxious. They may hear cancer, and everything else becomes blah, blah, blah.

ARONCZYK: Studies show that when patients are told their cancer prognosis, they retain less than half of what their doctor tells them. Many patients walk out of their appointments thinking they've been giving an expiration date, like they're a half gallon of milk.

LEVIN: It's not just one number that you can give to a patient. You can't say to a patient you've got 12 months left to live like in the movies.

ARONCZYK: You say that a doctor can't say it's going to be 12 months live, but they do all the time.

LEVIN: Well, I think what is happening is that the patients hear 12 months, and what the doctor is saying is that you have a 12-month median survival.

ARONCZYK: Median survival; so it's the middle of a range. That means that if you have 100 similar patients - same cancer, roughly the same age - in 12 months' time, 50 of those patients will be dead and 50 will still be alive. It's not as though 100 patients expire on some exact date, but that's often how patients understand it.

LEVIN: If a patient understands that they have 12 months left to live and they die within 11 months, they feel cheated. Well, you know, you told me that I had 12 months. I still had things to do. On the other hand, if a patient lives for 13, then he thinks, gosh, there's just no point. I've done everything. I've taken my cruise. I've said my goodbyes. I'm just waiting to die. And that, again, is time wasted.

ARONCZYK: Dr. Levin thinks patients need to think about their prognosis differently, and so do doctors.

LEVIN: So who can give me an example of a difficult prognostic discussion or a complicated one?

ARONCZYK: He teaches a communication skills workshop for people who work with cancer patients. Today's class is discussing prognosis. And it's attended by three doctors, including Dr. Afsheen Iqbal. She specializes in lung cancer.

AFSHEEN IQBAL: I had a really young kid who was 29 with stage IV lung cancer. He had started smoking...

ARONCZYK: She told the group about a patient she had seen with a very poor prognosis. He was really sick.

IQBAL: And I started crying when I was talking to the mob, who, you know, very easily could have been my mom. And only then did the 29-year-old who was, like, on his phone texting while I was talking him, like, not really understanding...

ARONCZYK: She never cries at work, but he was her youngest patient so far.

IQBAL: And I was new. Anyhow, so they didn't come back to me.

ARONCZYK: Balancing realism and hope is difficult. Dr. Levin describes three kinds of doctors - there is the avoider, who dodges difficult conversations. There's Dr. Death, who goes into agonizing detail about every possible bad outcome. And then there's the optimist. Most doctors fall into this last category. And according to recent data, sometimes the better they know the patient, the more optimistic - and wrong - they get the prognosis. It's the tyranny of positive thinking.

LEVIN: Everyone says, it'll be OK, think positive. And so the person turns around to his wife and says, well, honey, what happens if I die from this? And his wife says, don't worry about that, just think positive.

ARONCZYK: And the end result is that the patient is left alone with his fear of dying. These classes teach the doctors to talk about death while also maintaining hope. Hope is not just a feeling; 1 in 10 patients do really well. So Dr. Levin suggests they present patients with a best-case, worst-case and most likely scenario.

ASMA LATIF: So I want to explain a few numbers because...

ARONCZYK: Another of the students, Dr. Asma Latif, is role-playing giving a prognosis. The patient isn't real; she's an actress pretending to be a 42-year-old with stage III ovarian cancer.

LATIF: So the goal of the treatment is to cure the cancer.

UNIDENTIFIED WOMAN: (As cancer patient) Yes.

LATIF: But we know that often that's not possible. And actually, the most likely scenario is that we don't cure the cancer and that - can I do a timeout?

LEVIN: Yeah, take a timeout.

LATIF: I don't know - I don't know how to, like, recover from this.

ARONCZYK: Dr. Latif was struggling with explaining the prognosis for a cancer with a wide range of outcomes. It could progress quickly and the patient might die within six months, or she could be cured and live her entire natural life. It's a bit like saying it's going to snow and it's going to be sunny and it's going to be windy today.

LEVIN: This is exactly the challenge. So if you are expecting extremes of weather - let's say you have to be in three different cities within a short period of time, you have to pack appropriately.

ARONCZYK: Dr. Levin says patients need to be ready for extremes. The point of a prognosis is to help you plan for the worst and the best. Look at Heather Lake, the five-year stomach cancer survivor. On the day I met her, she was at the Queens Cancer Center in New York for her regular shot.

LAKE: It's for the bone marrow, the cells, the white blood cells.

ARONCZYK: But you haven't been doing chemo every other week for five years?

LAKE: Yes.

ARONCZYK: For five years.

LAKE: Yes.

ARONCZYK: You're kidding me?

LAKE: No, I'm not.

ARONCZYK: That's a lot.

LAKE: It is a lot. You know, I've gotten accustomed - this is how the life is. I'm just dealing with it.

ARONCZYK: Not all new cancer treatments are easy. But Heather Lake has stuck with it, and she's done remarkably well. Even Linda Bulone, the nurse who convinced her to try it, couldn't have predicted that Heather Lake would still be alive and happy today.

LINDA BULONE: She'll tell you more than anyone she has a great social life. She actually has a better social life than me. I live vicariously through Heather (laughter). And she just got back from Trinidad, right?

LAKE: From Vegas.

BULONE: Oh, from Vegas. Yeah, I can't keep up...

LAKE: Vegas - and I'm going to Trinidad in November.

BULONE: ...With all her travels. And we work her - she works her treatment around her travels. But she knows that that's what's keeping her doing these travels.

ARONCZYK: Bulone doesn't have a lot of patients like Heather Lake. Her grim prognosis, just four to six months to live, was based on data from the past. It didn't anticipate this new treatment or how well she would do.

BULONE: She outlived the study - not only outlived, but look how beautiful and terrific she is.

ARONCZYK: For NPR News, I'm Amanda Aronczyk in New York.


GREENE: That story is part of our series Living Cancer. It's produced with member station WNYC and also with WETA, whose documentary "Cancer: The Emperor Of All Maladies" will air on PBS next month.

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