Ros Miller: Hope Is Stronger Than Lung Cancer

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Topics include: Patient Stories and Living Well

On location in Denver, Colorado at the World Conference on Lung Cancer (WCLC), Andrew Schorr takes a few moments to talk to advocate, blogger and founder of Jillian's Dream, Ros Miller.  Ros, who lost her young daughter Jillian to lung cancer, channels all her energy into encouraging other lung cancer patients and their families to not lose hope.  Even though her own daughter is now gone, Ros is encouraged by how quickly medicine and research are developing clinical trials and personalized therapies for today's lung cancer patients. Listen as Andrew and Ros discuss various coping mechanisms such as determination, networking, advocacy and more. 

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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:

Hello.  I'm Andrew Schorr on location in Denver, Colorado, at the World Conference on Lung Cancer.  And you meet inspiring patients here and family members as well, and one of them is with me now, Ros Miller, who unfortunately lost her daughter, Jillian, at age 29 to lung cancer.  Ros has come here from Tampa, Florida.  She does a lot of very important advocacy work online and in-person in the Florida area.  She also does a blog for Patient Power, and we're very grateful for that. 

Ros, it is really, really tough losing a child—losing anyone to lung cancer, and losing a child, I can't even imagine. 

Ros Miller:

It's—it's devastating.  You hear one day that she's well and fine, and she's working and she's doing everything she should be. And the next day she's in a doctor's office, and they're doing a biopsy and they say, “Its cancerous but we don't know what kind yet.”  So then you sit in this void for weeks while they try and determine what tests do we need, what tests don't we need.  And then you're back at another doctor's office, just someone who hasn't seen patients in forever, and he tells you that your daughter has stage IV lung cancer and almost, “Thank you so much for coming by today.”  And there wasn't much that they thought that they could do. 

So we—Jillian made the decision to seek treatment elsewhere.  So she moved back to Tampa, which is where we were, and she sought treatment at Moffitt Cancer Center.  

Andrew Schorr:

Unfortunately, though, and the state-of-the-art is changing, it's a fatal condition for all too [many] people. 

Ros Miller:

It is.  We—we found out, Google MDs, we found out all too late that stage IV basically was terminal, and although there were a lot of things that were coming out and people were starting to talk about lung cancer, it doesn't seem that it was as fast as it is today.  In the two years since she's been gone, it's moved at light speed in terms of immunotherapies and new drugs and new gene mutations, and how they're looking inside and outside of the cell structure to try and decode and demystify and break it so that they can finally get to some point where someone with stage IV metastasized lung cancer has a greater chance of a longer quality of life.  

Andrew Schorr:

I have a tough question to ask you… 

Ros Miller:

Okay. 

Andrew Schorr:

…but it's the obvious one.  What you're hearing here and with the pace of change, you got to wonder if the timing were different would Jillian be alive today because of investigational drugs or even new approved drugs.  

Ros Miller:

I'd like to think so.  I'd like to think that whatever she had, based on her age and her desire to fight and her determination that she wasn't going to let this get the best of remember her, I think she would have been.  I think that there were just so many things that timing was just not in her favor at the time, but it's moved so quickly.  And I'm saddened, but I'm gratified when I see survivors, especially the young survivors who had the same technical staging as Jillian did, but they're here today. 

So I kind of credit Jillian for part of that.  She knew to participate in a clinical trial, and she also knew that it was not going to prolong her life eternally, but it was going to definitely make a difference to someone, and I think I see some of that here today. 

Andrew Schorr:

Okay.  I want you to look at the camera with me. 

Ros Miller:

Okay. 

Andrew Schorr:

So there are people out there affected by lung cancer, family members and patients, knowing what you know now what are some specific things you want to say to them?  

Ros Miller:

Be hopeful.  Just know that whatever is out there, the doctors and researchers are working so fast to try and help your loved one and don't give up hope.  And don't settle for palliative care and a short term of a quality of life.  Fight for it.  That's the only way we're going to make a difference.  You and us standing together, we're stronger than lung cancer and we can fight and make a difference. 

Andrew Schorr:

And she's been raising lots of money through Jillian's Dream… 

Ros Miller:

Right. 

Andrew Schorr:

…to help fund research, to really try to make a difference.  It's about money, it's about your own determination, and it's about connecting with the right providers as well…

Ros Miller:

It is. 

Andrew Schorr:

…who are knowledgeable. 

Ros Miller:

It is.  It's—it's not taking somebody's word.  It's researching, and if you have to do it on your own do it on your own, but have someone there to back you up.  It's using the system for your own purpose not theirs.  It's for making the most out of the information you have at hand and all the resources that are out there today from the Internet.  Not all of it is good, but there's a lot of great information.  And don't be afraid to put your doctor in an uncomfortable position. 

Andrew Schorr:

Right.  You're the one living with the condition, or your loved one, and so it's really important to advocate, advocate hard.  And connect with others.  

Ros Miller:

Absolutely. 

Andrew Schorr:

I know one last thing is it's been really gratifying to watch Ros connect with other people who have been touched by lung cancer, and it's been quite a reunion here, hasn't it been? 

Ros Miller:

It has.  I've been putting people and their faces from social media into an actual handshake and a hug, and it's gratifying.  And it's the tears and it's the laughters.  And it's very hard to be here because of this, but on the other hand it's very gratifying to know that I'm not in it alone and that is—there is this whole community.  And at first I thought it was just Tampa and it was just Florida and it was just my family, but it isn't.  It is global, and they are globally here working to do something on this. 

Andrew Schorr:

All right.  I'm going to give a hug too, okay. 

Ros Miller:

Oh, thank you. 

Andrew Schorr:

Thank you Ros.  Thank you for all you do.  We're on location where there's a lot of news coming out.  Stay tuned for that.  Know you're not alone.  And although Jillian has passed on let's hope that with the trial she participated in, the research that's going on will make a difference for patients today and patients to come. 

On location in Denver, I'm Andrew Schorr with Ros Miller.  Remember, knowledge can be the best medicine of all. 

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 October 6, 2015