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Three Ways to Advocate for Yourself and Navigate the Healthcare System After a Lung Cancer Diagnosis

Published on April 8, 2019

laura-blogOn June 23, 2017, I had the shock of my life when I was diagnosed with stage IV non-small cell metastatic lung cancer with the ALK mutation. As a 42-year-old, seemingly healthy single mom, the diagnosis was devastating and led to what I now thoughtfully call my “life in a blender” moment. 

Though it was no one’s fault, I was misdiagnosed for approximately a year prior to the cancer discovery. By the time my physicians figured it out, I nearly lost my life. Knowing what I know now, what would I recommend to someone newly diagnosed with a life-threatening illness? Remain calm and carry on living, because there are bountiful options and treatment plans. Diagnosis is not prognosis, and people all over the world are proving time and time again that cancer can often be treated as a chronic illness. There is hope

So just how do you navigate the healthcare system when you’re already overwhelmed with a serious diagnosis? I chatted with a few other patients about their experiences. We collectively agreed that if we knew then what we know now, our journeys would have been easier to navigate.

First, enlist the help of a caregiver—family, friend or both—who can assist with the details of your diagnosis, accompany you to doctor appointments, sort out medications, and help you understand your insurance policy and workplace time-off policies. Does your employer have an HR advocate that can help you with insurance issues? Is your doctor open to helping you communicate with your insurance company in the event a test or a medication is denied? It’s helpful to know the answers to these questions.

laura-blog2Second, coordinate your care. Many hospitals provide oncology social workers and nurse navigators who will connect you with programs for emotional support, financial aid, activities, retreats and fun events to keep your life feeling normal and filled with purpose. Start by inquiring with your physician. Many cancer patients enlist a group of cooperative caregivers for supplemental or alternative treatments. Just ensure your primary oncologist is always aware of which supplements, herbs, or holistic treatments you’ve added to your routine.

Third, be engaged, inquisitive and invested in your treatment plan, suggests Colleen Conner Ziegler, 62, of Rochester, New York, who was diagnosed with lung cancer in 2015. “Inform yourself. Ask questions. Even if you feel like you don’t have a grasp on it, because you’re not going to, the only way to learn is to ask questions and not feel like you are stupid.” Don’t be afraid to ask your physician any question about your condition and if you feel like you’re not getting the answers you need, feel empowered to seek a second opinion.

“You can never be informed enough,” said Jen Carrol Cosgrove, 40, of Glen Rock, New Jersey, who was diagnosed with lung cancer in 2017. “You always have to be your own advocate and be looking out for yourself. You have to be smarter than the cancer and stay ahead and be proactive” about your care. Cosgrove has a nurse caseworker who periodically follows up with her about second opinions, diet, and finding in-network physicians. If you don’t have a nurse caseworker or navigator, start by asking your physician or physician’s office.

Mille Torchia, 45, of Merrick, New York, who was also diagnosed in 2017, encourages every patient to stand in their power even if they feel out of control because of a diagnosis. “You really have to sometimes fight for what you feel is best,” she said. “It’s a time that you don’t want to deal with it, but sometimes you have to.” 

After reflecting on the ups and downs of the past 20 months since I was diagnosed, my ultimate takeaway is to pick your battles wisely. There will no doubt be times that errors happen, an important detail is overlooked, or you encounter a setback. Keep your energy close and funnel it into your healing journey. There is always hope

Laura Levaas

About Laura: Laura is a holistic life coach and the new Lung Cancer Community Manager for Patient Power. She has a background in journalism, marketing, and book and magazine publishing. She lives in Denver and is a mother to a lively 6-year-old boy and a photogenic kitten named Cheddar.

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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