How Can Lung Cancer Patients Navigate Between Different Doctors’ Opinions?

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Topics include: Treatments and Patient Stories

[Editor’s note (11/2018): Matt Ellefson passed away after a long battle with lung cancer. Matt was the epitome of what it means to live a purpose-driven life. His work has impacted thousands of people across the world.]

After getting a second opinion, it’s natural for patients to feel uncomfortable discussing it with their doctor or confused by the new information. Patient advocate and SURVIVEiT Founder, Matt Ellefson, shares his experience finding a balance between differing opinions, and expert, Sandra Manley-Eichler, from Robert H. Lurie Comprehensive Cancer Center of Northwestern University, also discusses how initiate the conversation. Watch now to uncover ways to make informed decisions about your lung cancer care.

The Living Well with Lung Cancer series is a Patient Empowerment Network program produced by Patient Power in partnership with SURVIVEiT®. We thank Celgene, Helsinn, Novartis and Genentech for their support.

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Transcript

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

Andrew Schorr:                  

Earlier, you mentioned about getting a second opinion. A lot of times, people are hesitant to mention that to doctor number one, because doctor number one will feel insulted. 

Matt Ellefson:                      

You’re absolutely right. And it’s not even doctor number one. It’s doctor number two. I mean, even today, at almost eight years, I need my doctor, and he’s great. And I have more than one doctor. I have a second opinion doctor, and I have even a third opinion doctor that I’m connected with all the time. But my primary oncologist—I need him. And I do not want to upset him. And I do not want him—because I feel that if I say the wrong thing and I upset him in some way, he’s not gonna give me the attention, maybe, that I deserve, and he may say, well, the heck with him. He’s a complainer. He doesn’t believe in me, so I’m gonna focus on other patients. That’s our normal thought process. But I’d love to hear Katie and Sandra, what their comments are on this.

That’s not true. They don’t do that. They understand that patients are going through a difficult time. And they know how to deal with it.

Andrew Schorr:                  

So, Sandra, what would you say? So one resource for people’s treatment is to get a second opinion, so there’s a clear picture of what they’re dealing with. What would you say? So how do they make that happen and feel okay about it?

Sandra Manley-Eichler:  

Well, I think we have to remember that physicians are also scientists. And scientists believe in repetition of testing. And so, if anything, the physician is very confident about his or her approach to your treatment, then they’re gonna want somebody else to verify that—to say, yup, that you’re going to the right place and you’re getting exactly the right treatment that you have. That being said, a lot of physicians, even though we hold them up as authority figures, and they’re really great people and very smart—they also appreciate that, hey, there maybe somebody else who has a better idea than I do.

 And so, I think having a very honest conversation, and even so much as just say, “You know, doc, I have a question, but I’m a little uncomfortable asking it.” And so, maybe that would be sort of a way to start the conversation and then continue from there. Because sometimes, you’ll be surprised. They’ll already have a person for you to go to. They’ll say, “Oh, sure. I know somebody at Sloan-Kettering. I know somebody at Dana Farber. You should go to this person for the second opinion,” right? And so, I think that it’s just kind of checking in with them and seeing where’s your next step?

Andrew Schorr:                  

Okay. And one more thing about it is, let’s say that my family member uncovers a clinical trial somewhere else. You’re in Chicago. You have a bunch of major medical centers. I may be hesitant, or should I be, to bring it up with my doctor at my institution where I’ve started, because the trial’s not there. 

Sandra Manley-Eichler:  

I think a lot of people feel hesitant, and you folks already mentioned this idea of maybe offending the physician or insulting them in some way. I think that it’s one of those things where a clinical trial contributes to everybody. So, enrollment in clinical trials really only helps the physician that you’re seeing, whether it’s at the place that you’re going first to start treatment or all of them. So, I think that there’s a really great community of physicians who really believe in clinical trials, and they want more enrollment, and enrollment for something that’s the best for your cancer. I think one of the best things about lung cancer treatment is how targeted it is. And that’s really coming out in a lot of the research. And the research wouldn’t be here without clinical trials, whether that’s at your home institution, or whether that’s at another hospital. But the hesitancy is definitely there.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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Page last updated on April 3, 2019