In late 2009, Chris Newman thought she was just another busy person who kept feeling run down. “I had profound fatigue for a year and two bouts of bronchitis,” recalls Chris, who was a lawyer at the time.
Then a bad case of pneumonia took her to the emergency room, where an X-ray revealed a large mass—nearly three inches across—and several small ones in her lungs. A biopsy showed she had non-small cell lung cancer, a PET scan for sugar uptake showed it was extremely aggressive, and genetic testing showed there was no targeted treatment for it.
An oncologist at her small community hospital said she had a 5% chance of survival, offered only palliative care, and told her to get her affairs in order. He did not give her any information on lung cancer and, rather than focusing on her needs, had a long phone conversation with his wife right in the middle of giving Chris his dismal prognosis.
“It felt like a huge sucker punch,” Chris says. “I figured ‘this is it.'”
As if that wasn’t enough, she also had to endure the stigma of being a smoker. After finding this out, her nurse said, “Well, you took a calculated risk and lost.” Then the nurse walked out of the room and left her alone.
“I got a death sentence and judgment all at once,” Chris says. “I felt unworthy of compassion.”
But after mourning her life and berating herself for smoking, she rallied. “I thought, I’ve got to get to know this enemy,” she says. Her online research saved her life. Chris checked the National Comprehensive Cancer Network (NCCN) physician guidelines for her type of lung cancer, and learned that a revision was just about to go into effect. Under the new guidelines, her cancer was stage III rather than IV, making her a candidate for surgery rather than just palliative care.
Then she found that a nationally-recognized thoracic surgeon practiced nearby. “When I asked for a referral, my oncologist said, ‘Fine, but he probably won’t be able to help,'” she says.
But the thoracic surgeon could and did help Chris. “He said surgery was my best chance for a cure,” she says. When surgery showed the cancer had spread to 18 lymph nodes, she found a new oncologist who was affiliated with a National Cancer Institute-designated teaching cancer center. Six follow-up chemotherapy treatments and nearly five years later, she still tests cancer free.
“I’m so lucky to be here today,” she says.
Now, Chris is a patient advocate. Inspired by her personal experience, in 2014 she spearheaded a campaign to help non-small cell lung cancer (NSCLC) patients with limited metastases (oligometastasis). While Chris knew that recent research supported aggressive treatment for oligometastasis, she noticed that the 2010 NCCN guidelines for NSCLC did not include this option.
So she put together a team of lung cancer researchers and advocates who made the case for revising the guidelines accordingly. “We submitted the proposal to NCCN, and low and behold it succeeded,” she says. The new guidelines, which took effect on January 1, 2015, include this line: “Aggressive local therapy may be appropriate for selected patients with limited-site oligometastatic disease.”
Supporters of her NCCN proposal included the Bonnie J. Addario Lung Cancer Foundation, which has just invited Chris to join its new Patient Advisory Board. “I’m thrilled—working with such a highly respected international organization lends more muscle and credibility to advocacy projects,” she says. “I can’t wait to get started.”
Super Patients are cancer survivors who learned to be more engaged in their own care. Cancer Commons believes every patient can be a Super Patient or benefit from a Super Caregiver. We hope these stories will provide inspiration and hope for your or your loved one’s own treatment journey.