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Next Steps in a Growing Conversation (Part 2 of 3)

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Published on June 22, 2017

As I mentioned in my last blog, over the last 5 years, we in the lung cancer community have really started changing our message to be all-inclusive. We no longer will settle for just prevention tools. Since my very first International Association of the Study of Lung Cancer Conference, I’ve learned that lung cancer is a worldwide epidemic. In order to change statistics and perceptions, we have to believe that we can get this done! A partial solution is not good enough.

That leads me back to the Summit. The topics presented and discussed at this year’s HOPE/COPE Summit were targeted toward the audiences: Hope was for patients. Cope was geared toward their caregivers.  Day 1 was focused on the power of advocacy. As patients and caregivers alike, we are all advocates.  Honestly, sharing our stories, not just during Lung Cancer Awareness Month, or National Lung Cancer Hope Month or any of the other cancer months but always is the point. We need to have conversations with people because our stories are of our strength, courage and determination. We’re not only fighting for ourselves but for better understanding and treatment of lung cancer. Remember that 5-step message:

Step 1: Prevention
Step 2: Early diagnosis
Step 3: Treatments
Step 4: Research
Step 5: Survivorship 

Throughout the Summit were many learning opportunities. I heard about the Apollo Consortium—Applied Proteomicgenesis Organizational Learning and Outcomes, an offshoot from Vice President Biden’s Moonshot.  It is a tri-agency collation that will help to identify effective drugs for cancer patients. That reminded me of the ORIEN Network that Moffitt Cancer Center, Jillian’s hospital, is working on with M2GEN. Both are involved with advancing cancer discovery and delivering improved care across all cancers. Hearing about these collaborations is one of those “did you know …” moments that make you realize how far we’ve come in 5 years. I wouldn’t have known this or what Dr. Jack West is up to—Cancer Grace: Global Resource for Advancing Cancer Education—if I wasn’t an advocate and had these opportunities available to attend and participate in conferences and summits.

Saturday afternoon, I found myself as moderator at the caregivers table during the roundtable session. We were given outlines of questions to use that mimicked those from our panel discussion. The one thing this format did was giving me a chance to meet new people, fighters, thrivers and survivors. Each had their own issues they struggled with. The consensus was that we don’t really have a choice to be or not to be a caregiver. That is just who we are because we love our parent, spouse, child or friend. We are willing to speak up, fight, research, clean up—whatever it takes to make their life easier—because let’s face it, they are going through extraordinary measures for one more day, one more dream. If they can endure chemo, radiation, surgery and not complain to us, then we can step up and do our part.

On the last day of the summit, I heard Andrea Sterns Ferris’s address about the State of Lung Cancer. The landscape has changed. From treatment options to collaborations, the lung cancer community has momentum.  Dr. Paul Paik from Memorial Sloan Kettering spoke about clinical trials. I thought I knew what they were about. No, I didn’t. From the outset of a hypothesis to the formulation of a drug, there is a lot of research. But it pales in comparison to what is done with that drug. We felt like Jillian was a “guinea pig” (as most patients fear when they consider participating in clinical trial).  There are many questions and decisions that are made before deciding if a patient wants to participate in a trial: What exactly is it? Do they get standard treatment with or without added drugs? What stage is the trial? Investigational? Dosage efficacy? Phases? What is being asked of them? Randomized? Blind testing? Compliance? Privacy? Who pays for what? Why should you participate? It can be the true elephant in the room with so much information coming at the patient all at once. The sacrifices that Jillian and each of these patients makes to advance research, science and treatment options are high.   

One of the last topics presented was "Making the Most of Your Survivorship". Jillian never considered herself a survivor. It’s worth talking about though. The definition of survivor is a person who is alive after an event or illness where others have not. For me, if I were to call myself a survivor, it would be using this definition: a person who copes well with difficulties in their life. The discussion was more about being open to share your story, how to deal with your cancer after you’ve heard that word used with your name, how to gain some control over a disease that has a mind of its own, getting the right medical team for you, palliative care and most important but the least talked about: how to live well after cancer.  

That’s the one I struggle with…how to live after Jillian’s cancer.  But that’s for another day…. 

Together, we are Stronger. Than. Lung. Cancer.

Ros Miller, President
Jillian’s Dream (Facebook)

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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