Written By Nicole Katze, MA, Editor and Manager, Content Development
Denise Hyater-Lindenmuth has steadily advanced in her career in nonprofit communications and development for the past 20 years. As a dedicated professional and family member, she has always found a way to balance the demands of work and home. While raising her son, she filled a variety of roles focused on health issues in the Washington, DC, area, including serving as a member of Living Beyond Breast Cancer’s national board of directors.
Given her motivated personality, it is no surprise that after being diagnosed with stage II triple-negative breast cancer in August 2011, Denise set to restructuring her daily schedule to make room for treatment without leaving behind anything else. Shortly before her diagnosis, she had accepted a position as chief development officer of Melwood, an organization that provides resources to people with disabilities; a year earlier, she had married. Her husband, Philip, went with her to her weekly chemotherapy treatments, where she worked from the hospital bed.
“I had an entire life to look forward to,” Denise says. “My diagnosis shocked me, but I had to take care of business. I had to push forward.”
Denise discovered the lump in her breast while confined to bed after tearing her Achilles tendon during a workout. At 48, she had already started having yearly mammograms. Her most recent test hadn’t shown anything suspicious.
“It made me angry that my mammograms hadn’t detected anything,” says Denise, who learned she has dense breasts through her diagnosis. “I felt like the system failed me.” High breast density makes it harder for doctors to find breast cancer using mammograms, because dense tissue can block the x-rays used in imaging. Clinical trials are testing better ways to screen for breast cancer in women with dense breasts.
Disappointed in her healthcare team, Denise asked to enter a research study. Her diagnosis made her eligible for the I-SPY 2 clinical trial that accepted participants at Georgetown University Medical Center’s Georgetown Lombardi Comprehensive Cancer Center in DC. As part of the study, Denise had neoadjuvant chemotherapy – chemotherapy before surgery – rather than the traditional adjuvant chemotherapy, which comes after. Neoadjuvant chemotherapy may help shrink tumors and make them easier to remove, and help doctors determine what kind of treatment you may need after surgery.
“I knew that in a clinical trial I would be more closely monitored and that everything would happen exactly as it should because of research standards,” Denise says. “After my mammograms missing the lump, I needed to know that for my own sanity.”
Denise knew that clinical trials are a resource many women avoid out of fear or misunderstanding of how they work. Some people believe clinical trials test dangerous medicines or don’t target medicine for their situation, but Denise saw their structure as a way to ensure she received the best care possible. She recommends seeking out trials with the help of your oncologist and asking important questions about the length of treatment, possible side effects, the expected outcomes and the level of access to your trial doctors during the study.
The community health educator in Denise says that the experience of breast cancer has helped her see another area where health education may be useful.
“Too few women know that it’s OK to do clinical trials,” she says. “You have to take a proactive stance and know that with the right healthcare team and by asking the right questions, you can tackle anything. Sometimes clinical trials are the answer for that.”