Consumer Involvement
Terri Ann DiJulio
LCRP Consumer Reviewer
For years, lung cancer (LC) has been the leading cause of cancer-related death in the United States for both men and women.1 The number of lung cancer deaths is greater than those from colon, breast, and prostate cancers combined, however, the amount of federal funding for lung cancer is significantly lower in comparison.2 Funding for lung cancer is especially important to avid recreational cyclist Terri Ann DiJulio, a three-time lung cancer survivor and a consumer reviewer for the Lung Cancer Research Program (LCRP). She is a passionate advocate for additional funding so that there can be more survivors with outcomes like hers.
Terri Ann’s own diagnosis preceded diagnoses of LC in her mother, two uncles, and an aunt; she is the only one in a family with multi-generation LC diagnoses to have survived it. Her battle began in 2003 when chest pressure led to an emergency room visit. A pulmonary nodule was detected in the lower lobe of her right lung. She began having routine lung scans every 6 months. After 2 years of follow-up scans the nodule showed signs of changing, so she was referred to a surgeon, who believed it was benign. Surgery was performed to investigate and remove the nodule, which was, in fact, a Stage 1 malignant tumor. Resection of her lower right lobe removed the nodule, and further treatment was not needed. The next year, she underwent a wedge resection of her upper right lung due to another nodule that, thankfully, was benign.
However, her survivor story does not end there. Terri Ann likens her fight with lung cancer to that of cycling a path up and over a mountain to get to the ocean. When fear of not making it to the top intimidates her, she reminds herself to take the ride 15 minutes at a time; likewise, the focus on the LC fight is one battle at a time. Terri Ann had routine follow-up scans with no evidence of disease for 11 years, but then another Stage 1 nodule appeared in her right lung. The only surgical option was to remove her entire right lung – not what she wanted to do – so she opted for stereotactic body radiotherapy (SBRT), a high dose of noninvasive radiation. Several years passed with no evidence of disease in follow-up scans.
In early 2021 another lung nodule was discovered, this time in Terri Ann’s left lung. Terri Ann was hopeful that SBRT would work again, however, this time surgery was advised as her best option. Her new surgeon, Dr. Sunil Singhal at Penn Medicine, was also a Principal Investigator for a research project titled TumorGlow®. Before surgery, patients receive a fluorescent dye infusion that attaches itself to the cancer cells. The dye-infused cancer cells “glow” under a special camera that helps the surgeon ensure clean margins when cutting out the tumor. (A phase 2 clinical study is now being conducted to test the efficacy and safety of TumorGlow®, NCT02640170) Terri Ann enthusiastically enrolled in the clinical trial. She went in for her surgery, and, while the doctors were operating, to their surprise, a second tumor glowed. They were able to remove both tumors in the same wedge with clean margins with no added morbidity to her! The pathology report did show that the initial tumor of interest and the unexpected second tumor that lit up were indeed malignant. Participating in this clinical trial saved her from an additional surgery or radiation therapy that would be required in the future to remove the fourth tumor. Terri Ann says, “I am just so grateful. The research that is being funded here is important, ground breaking and revolutionary. The lung cancer community desperately needs these advances.”
Terri Ann, who has long advocated and raised funds for the LC community, including riding her bike 300 miles through the state of New York in a Ride Hard Breathe Easy fundraising event, recently lent her efforts to “60forSixty,” with the goal of raising $60,000 for the Go2 Foundation for Lung Cancer. She had often thought that if she made it to her 60th birthday she wanted to do something big for the LC research and patient community. Though COVID-19 has made it difficult to hold public fundraising events, and she herself is more susceptible to contracting the virus, she reminds us that lung cancer is not shut down, and she is not, either. By leaning into social media and other online opportunities to promote her campaign in lieu of in-person fundraising events, Terri Ann managed to overwhelmingly exceed her goal and raised $80,000. She serves as a National Ambassador for the Go2 Foundation, is a member of their Voices Summit planning committee, and led her state team at the annual advocacy Hill day in Washington, DC, educating Congress Members to increase funding for the LCRP. She is also a phone buddy with fellow patients and, as noted above, a consumer reviewer for the LCRP. Regarding her role as a reviewer, Terri Ann says, “Although I have no science background and was a little intimidated, I found the experience to be extremely rewarding, one of the most rewarding in my LC advocacy to date, actually.”
Through her work as an advocate and consumer reviewer, and experience as a patient, Terri Ann has been in constant contact with both the LC patient and research communities. She encourages the two communities to come together as they work towards their common goal: “To the scientists, thank you for your commitment to the lung cancer community; we desperately need you and greatly appreciate you. To anyone considering becoming a consumer reviewer, I recommend applying; the lung cancer community needs your voice!”
1 https://www.cancer.org/cancer/lung-cancer/about/key-statistics.html
2 https://lungevity.org/for-supporters-advocates/lung-cancer-statistics
Last updated Thursday, May 26, 2022