Daniel West: Confronting Lung Cancer One Step at a Time
Daniel has a family history of heart disease. In 2019, his dad died from a heart attack. So, in 2022, Daniel took up an opportunity he had through work to receive cardiac testing at an affordable price. “The results came back, and they said they saw two nodules on my lung that looked concerning.” Further testing through CT scans and a PET scan showed a nodule in the middle of the lobe of his right lung. His provider wanted to do a biopsy and ordered a bronchoscopy. Daniel still remembers getting the call from his physician while he was at a music convention in Chicago with his husband John. They set up an appointment with his doctor as soon as they got back to Houston. On December 22, 2022, Daniel received his diagnosis of non-small cell lung cancer (NSCLC).
Being a task-oriented person, Daniel immediately sought to figure out the next steps. His primary care network connected him with a surgeon who recommended resection to remove the nodules. Having some reservations, Daniel and John wanted a second opinion and reached out to the University of Texas MD Anderson Cancer Center. “That is how we ended up at MD Anderson, and I’m so thankful that we are here. I had so many questions. It is important to find someone that can be an advocate and help you navigate the steps that you need to take for treatment,” said Daniel. “I think the most important [thing] for us is communication with our doctor and trust. My doctor is understanding of John’s and my relationship. He understands that we’re a team and that we make decisions about my treatment together. And that was important for us,” Daniel added.
His initial treatment was lobectomy (a surgery performed to remove an entire lobe of the lungs) since his physician believed that the cancer was contained in the middle right lobe. The surgery was successful. During the procedure the surgeon also removed several lymph nodes around the tumor to determine if there were any cancer cells. The lymph nodes came back positive, revealing there had been some spread to the lymph nodes, particularly the ones immediately around the tumor. This led to a change of his diagnosis to a more advanced stage IIB NSCLC. As a result his care team recommended several rounds of chemotherapy following surgery.
During his discussion with the surgeon, Daniel was informed that his first hospital had done some biomarker testing of his nodules. The tests had shown that his tumor was positive for alteration in the EGFR protein, an aberration that is frequently linked to lung cancer among individuals who never or rarely smoked and is a target for many molecularly targeted therapeutics. Since completion of his chemotherapy regimen in June 2023, Daniel has started receiving the EGFR-targeted treatment osimertinib (Tagrisso).
The chemotherapeutics took a toll on Daniel. He experienced neuropathy, sciatica, and stomach ulcers. He also developed deep vein thrombosis in his leg as well as pulmonary embolisms requiring him to be on blood thinners long term. But the treatments are working. Daniel currently has no evidence of active cancer. His physicians are monitoring a couple of small nodules, but there has been no progression. “So, we’re very thankful for that,” Daniel said.
Daniel’s journey has taught him to be an advocate for his own health care. “It’s partly on me to be proactive in my treatment.” And he hopes that as a society we can learn to dispel the stigma and guilt associated with lung cancer. “Often, the first question that people ask when I share my diagnosis is, oh, I didn’t know you smoked, or did you smoke? I guess they’re looking for a reason why this otherwise seemingly healthy person would be diagnosed with lung cancer. And the bottom line is anyone with lungs can get lung cancer,” he said. Through his advocacy and meeting with other survivors, Daniel has gotten more comfortable talking about his cancer. “I don’t feel guilty. I feel focused on getting well and living my life.”
Key lessons that Daniel has gained along the way are that access to early detection and affordable screening are vital. “Unfortunately, my light smoking history was outside of the USPSTF guidelines for screening and I would not have qualified for insurance covered testing.” Additionally, trusting one’s care provider and having open lines of communication are key. “Being a gay man, what was important for me was being able to trust my doctor. It’s very important for anyone in my community to be comfortable with their physician. It’s okay to get a second opinion if you don’t feel like you’re getting the care that you need,” he said. His advice for other cancer patients from the sexual and gender minority community is to make sure that they trust their providers and have clear communication about their care plans. “We made decisions to be comfortable with our treatment plan. As a patient, it was important for me to have a provider that acknowledged the relationship I had with John and the fact that we were making this decision as a family.”