On April 21, LUNGevity’s Director of Community Outreach, Dr. Eugene Manley, Jr., moderated the first in a series of Conversations That Count, titled The Black Experience of Lung Cancer. As part of LUNGevity Foundation’s health equity webinar series, the following panelists came together via Facebook Live to share personal and professional stories of incredible tenacity in accessing lung cancer care:
- Maisha Standifer, PhD, MPH, Director, Health Policy at the Satcher Health Leadership Institute at Morehouse University School of Medicine, LUNGevity Community Scholar-in-Residence, and lung cancer caregiver
- Shyreece Pompey, lung cancer survivor, author, and founder of Queen of Overcome
- Darius Hollings, MD, Assistant Professor of Surgery at the University of Tennessee Health Sciences Center, College of Medicine-Nashville, and Minimally Invasive Thoracic Surgeon & Chair of the Cancer Committee at Ascension Saint Thomas
Dr. Standifer’s husband of 11 years, Emmanuel, was initially diagnosed with bronchitis. After a chest x-ray at an urgent care center, he eventually received a diagnosis of Stage IV NSCLC in the early months of the COVID-19 pandemic. Doctors were eager to start chemotherapy right away, but, drawing on Maisha’s knowledge and experience as a cancer research associate at Moffitt Cancer Center in Tampa, FL, the Standifers asked for a second opinion.
“I knew about clinical trials and studies,” said Maisha. “My husband was sitting there in shock, and I’m there as his advocate, his caretaker, and his wife. I said we’d think about chemotherapy, but that we would be getting a second opinion. The conversation turned a bit tense after that. [The doctor said] Why do you need a second opinion? I told you what he has. Yes, but I knew that there were options.”
As part of the second opinion process, Emmanuel underwent biomarker testing. The test revealed that he was ALK-positive and could start treatment on a targeted therapy. Reflecting on the differences between her husband’s initial treatment plan and the second opinion, Maisha added, “I was able to sit in front of an oncologist who looked like me, talked like me, and to whom I could relate. It was a very caring connection for me and my husband.” The rest of the panel echoed the importance of having emotional support from multiple sources, including doctors, family, friends, neighbors, and faith groups.
Shyreece Pompey was diagnosed in 2014 - also at Stage IV - and shared her journey to cancer care in a more literal sense. She made the difficult decision to move out of a rural area and across state lines to be closer to her healthcare team, and still travels more than two hours to get to her doctors’ appointments. Like Maisha’s career experience, Shyreece’s extraordinary sacrifice represents circumstances that not all patients are willing or able to overcome. Her advice for newly diagnosed patients in rural areas: “Take notes and ask questions,” either in-person through a patient navigator or online through a patient portal system. The first step, she added, is to ask the local oncologist to consult and collaborate with an oncologist from the nearest university or academic medical center.
One such oncologist from a university medical center is Dr. Darius Hollings of the University of Tennessee. Dr. Hollings discussed several barriers to access for Black communities, including attributing lung cancer symptoms to other chronic health conditions or assuming symptoms will go away on their own, lack of insurance, or a primary care doctor to submit a referral for lung cancer screening, and mistrust of the healthcare system.
Dr. Hollings spoke of the need for improvements in communication to doctors and medical students, as well as to the general public. First, the fact that lung cancer often presents as back or shoulder pain in men of color, particularly Black men, should be emphasized in medical school. Second, there is a need for more awareness of the two factors that influence lung cancer screening guidelines and determine screening eligibility: age (over 50) and smoking history (current smokers OR those who have quit in the past 15 years). A key component of raising awareness is community outreach, he explained: “We need to meet people where they are: the barber shop, the church, even the grocery store.”
In addition to stressing the importance of guideline-adherence in screening, Dr. Hollings shared the acronym BREATHE to know when to seek care:
B: Blood when you cough or spit
R: Recurring Respiratory infections like pneumonia
E: Enduring cough
A: Aches and pains in the shoulder, back, chest, or ribs
T: Trouble breathing on short walks or walking up stairs
H: Hoarseness or difficulty swallowing
E: Expiratory wheezing - wheezing when you breathe out - which may be mistaken for asthma or COPD