A Different Ending to the Story of Lung Cancer

For Dan Kitts, early screening might have changed everything. His diagnosis sent Andrea, Dan’s wife, on a quest to bring life-saving screening to patients at risk.

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June 2015

One of the sad facts about lung cancer is that, because of the ferocity of the disease, it’s a challenge to obtain a perspective from patients themselves. So many die before telling their stories, leaving their loved ones to take up the cause. At 10:21 a.m. on April 12, 2013, my soulmate, Dan, joined the almost 160,000 annual victims of lung cancer. The saddest fact is his story did not have to end this way.

Dan was what CMS now recognizes as a patient at high risk for lung cancer. He was 69, a former smoker (quitting 11 years before his diagnosis), with an 80-pack-year smoking history and chronic obstructive pulmonary disease. He also had a family risk factor. His sister, Bobbie, died of lung cancer in 2001, at age 62, 10 years after she quit smoking.

In January 2011, I asked our primary care physician to screen Dan using a spiral CT scan. I had read about the promising but unpublished results of the National Lung Screening Trial (NLST), and, given Dan’s risk factors, it seemed prudent to get the screening. Our physician did not have firsthand knowledge about the purpose or accuracy of this test and, understandably, did not recommend it for Dan. While a radiologist may have been able to weigh in on the benefits of the screening, the fact is, it was not covered by CMS and Dan did not want to pay for it out of pocket. Eight months later, in October 2011, Dan was diagnosed with stage 4 lung cancer.

I read everything I could about lung cancer treatments for the next 18 months, drawing on my experience as a mechanical engineer, reasoning out exactly how things work and approaching the problem from every angle. I read journal articles, combed the clinical trials database, joined online patient forums, and teamed up with our oncologist to set up expert consults, get second opinions, obtain molecular testing of Dan’s tumor, and secure FDA approval for the com- passionate use of an experimental lung cancer vaccine. Unfortunately, as is the case with most late-stage lung cancers, my efforts were in vain for Dan. He died in my arms at our home in South Glastonbury, Conn., more than 20 years after we exchanged our vows at sunrise on Florida’s Coral Cove Beach.

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Four days after Dan died, I called our primary care physician and convinced him to start discussing lung cancer screening with his patients. Several weeks later, I briefed the internists in his practice on the NLST results. It seemed to me that focusing on screening would result in the most lives saved. If we could catch cancers before they spread, more patients would survive the disease. As it turns out, as I was launching my plan, the ACR was laying the groundwork for its own advocacy work to bring screening to patients.

Changing the status quo in medical care is a herculean task. Radiologists will be important ambassadors for lung screening.

I continued my efforts by producing and handing out close to 2,000 pamphlets on lung cancer screening, posting YouTube videos, participating in lung cancer walks, volunteering for the American Lung Association, advocating for Free to Breathe (a group made up of lung cancer survivors, advocates, researchers, health care professionals and industry leaders), and volunteering at Hartford Hospital to help implement its lung cancer screening program.

Through my volunteer efforts, I became involved in lung cancer summits, seminars, and advocacy events. I went on the radio, wrote op-eds, and reviewed lung cancer grants as a patient advocate. This work led me to begin earning a master’s degree in public health, which I expect to complete in May 2016. I am also working as a consultant to the Lahey Hospital and Medical Center’s lung cancer screening team. While I am thrilled lung cancer screening is now recommended by both the USPSTF and CMS and covered by insurance and Medicare without a co-pay, the journey to saving lives is just beginning. Changing the status quo in medical care is a herculean task.

Andrea2Radiologists will be important ambassadors for lung screening. We need to make sure physicians are aware of this test and talk to their at-risk patients about screening. I encourage you to take every opportunity to tell other physicians about lung cancer screening, perhaps by volunteering to speak at a grand rounds or at conferences for other medical disciplines. You may even consider partnering with primary care physician groups to have a screening day at your  site.

As we enter this new chapter in prevention of lung cancer, the focus must be on maximizing access to high-quality screening for every member of the high-risk population. The ACR, and all of you, will play a critical role in making this happen.


The Importance of Allies

Lung cancer is the deadliest cancer among Americans — it is estimated 159,260 lives were lost to lung cancer in 2014.1 It is also one of the most treatable. That is why the College, along with the Society of Thoracic Surgeons and the patient advocacy group the Lung Cancer Alliance, banded together to ensure CMS would cover low-dose CT screening for those at the highest risk for the disease. Working together with stakeholders across the health spectrum was vital to getting screening coverage approved by CMS. “Lung cancer and lung cancer screening touch so many disciplines and affect us all,” says Ella A. Kazerooni, MD, FACR, chair of the ACR Committee on Lung Cancer Screening. “It’s imperative we work with patient advocates because of their vital connection to the patient community, and with providers to communicate the value of this tool for the population’s health.”

Now that CMS has mandated coverage, it’s more important than ever for radiologists to be a part of the team and help change the face of lung cancer. To find out what comes next for radiologists and the College, check out the February columns by Bibb Allen Jr., MD, FACR, in the JACR® and the Bulletin.


By Andrea Borondy-Kitts, patient advocate (@findlungcancer)
Endnote
1. National Cancer Institute. SEER Facts and Statistics: Lung and Bronchus Cancer. Updated 2015. Accessed March 25, 2015. Available at 1.usa. gov/1xyuf lK.



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