What Resources Are Available to Small Cell Lung Cancer (SCLC) Patients?

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Topics include: Treatments and Understanding

As a small cell lung cancer (SCLC) patient, what resources are available during your cancer journey? Andrew Schorr discusses with Carly Ornstein, the National Director of Lung Cancer Education, what resources the American Lung Association provides for SCLC patients on lung.org/lungcancer. Jerry Schreiber, a lung cancer survivor, shares his advice to other lung cancer patients. Watch for their tips on ways to move forward whether you’re newly diagnosed with lung cancer or already in lung cancer treatment.

Produced by Patient Power. 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:

Carly, so what are the resources that small cell lung cancer patients could ask the American Lung Association for help for? 

I imagine you have a lot of information.  I don't know if there are support groups or what other kinds of activities you might have.

Carly Ornstein:

Sure.  So we have a large amount of information on our website.  It's lung.org/lungcancer, and if you go there, a little navigator tool pops up. And you can select where you are, whether you're newly diagnosed or you're in treatment. And it will basically guide you to the information that you need to know, which is really important, because we know lung cancer patients are just really overwhelmed.  So you can start with the navigator and then explore more on our site. 

As I mentioned, we have our Freedom From Smoking program available, and you can find more information about that on our website as well our lung helpline, which is stocked by nurses, respiratory therapists and tobacco cessation experts.  So call the lung help line, 1?800?LUNGUSA, talk to someone.

And then we have a wonderful online support community, The Inspire Network called lung cancer survivors, and I know that there is—there are several groups within that group devoted to small cell lung cancer.  So go there, check that out, connect with other patients. 

I'm sure we have even more resources—oh, the one other thing I wanted to say since we were talking about streaming, we just launched a big campaign called Saved by the Scan.  We're really passionate about streaming and spreading the word. So if you go to savedbythescan.org, you can take a quiz to see if you're eligible for lung cancer screening, and you'll be connected to a lot more resources that will help you ask your doctor about that.  So obviously that's not for people who are existing lung cancer patients, but maybe you know someone. 

Andrew Schorr:

Or a spouse or family member maybe who, whether they were a smoker or not was maybe exposed to a lot of smoke, and so that would be an issue, and I know we've talked about that before.

Hey, Jerry, I just want to check in with you.  We've been learning a lot, haven't we?  I mean I think it's a hopeful message.  What do you want to say to people who—you were you lucky enough, as Dr. Chow said, to be diagnosed early, but what would you want to say to people who have this diagnosis?  Do you have a message? 

Jerry Schreiber:

Well, I think, yeah.  I would first say a second opinion, which has been discussed.  I'm very happy what the local Franciscan community did for me.  They did very well.  But I'm also extremely happy that I've got the University of Chicago with Dr. Patel.  And I think there's pluses on both sides, but I would encourage anybody to get a second opinion and get to the academic community wherever.  Even if you have to travel, it's worth it.

I have to put a plug in for the nurses, because I never had an understanding of what nurses really do till I went through this, both for the surgery and the chemo.  Those people are fabulous in what they do, and they take such wonderful care.  And they're the people you're dealing with hour by hour, and it made a big difference. 

And the other thing I would tell people, lean on your family.  It was extremely helpful to me.  My family rose to the occasion and, you know, they took notes.  They took notes because I don't hear well, and the patient gets excitable and the spouse gets excitable, but the children all took notes, and we know exactly everything that happened.  So it's comforting to me that what I don't know they keep me up to date on.  So I can't say enough for that.  

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 December 21, 2017