The Patient Voice: Asking Questions, Seeking Second Opinions in Lung Cancer Care

A lung cancer diagnosis comes with a flood of information, appointments, and decisions — often all at once, often before a patient feels ready. But experts and advocates say that patients who actively participate in their care, ask questions, and seek out the right expertise consistently have better experiences and, in many cases, better outcomes.

The good news: patients do not need to know everything. They need to know how to ask.

Questions Every Patient Should Be Asking

Leah Phillips, who was diagnosed with stage 4 lung cancer over six years ago and now advocates for patients through the Young Lung Cancer Initiative, has built what she calls an informal checklist for newly diagnosed patients. It covers more than just the disease.

She encourages patients to ask their care team about the most common side effects of their proposed treatment and who to call if they experience them. She recommends asking about scan schedules — including how often brain MRIs will be done — and about what support services are available through the clinic: palliative care, social work, financial support, and fertility preservation for younger patients. "We're talking about living here. We're not talking about dying," she said. "You're on the path to live — so what are you going to need to live your best life?"

Phillips also consistently tells patients to remember one thing: "You are just as much part of this decision-making process as your team."

Second Opinions Are Not a Betrayal

One of the most consistent messages from the panel was that second opinions are not just acceptable in lung cancer care — they are strongly encouraged, particularly for patients with less common or rare mutations.

"If you want a second opinion, you should get it," said Dr. Bruna Pellini of Baptist Health Herbert Wertheim Cancer Institute. "And if you want to go somewhere, just let me know, I can call them and get you to see my friends." She tells patients plainly that seeking another perspective is not a reflection on their doctor — it is about finding the right fit and gaining confidence in their care plan. "It's not about them being a bad doctor or a good doctor. It's about a fit."

Phillips adds a practical note: if a patient feels uncomfortable asking for a second opinion, or if the doctor reacts negatively to the request, that reaction itself may be informative. "If they give you grief when you say, 'Should I get a second opinion?' it's probably not the person you want to be with."

Community Oncology and Academic Centers: A Partnership, Not a Competition

More than half of all patients with cancer in the United States are treated at community hospitals and cancer centers — the care settings closest to where patients live and where their support systems are. It is often the right answer for day-to-day care.

For patients with complex or rare diagnoses, connecting with an academic or research center that specializes in their type of cancer can make a meaningful difference — not as a replacement for their community team, but as a partner to it.

Lisa Spain’s advice to patients: "Go to the academic institution, go to the research hospital, get the testing you need, and make them your quarterback. Let that quarterback work with your hometown oncologist. They call the plays; these guys run them."

This model allows patients to receive treatments close to home — infusions, monitoring, routine visits — while the specialized center remains available for major decisions, clinical trial access, and complex situations. With virtual visits now widely available, many academic oncologists can stay involved in a patient's care across distance.

Dr. Pellini underscored why access to specialized centers matters beyond just the expertise of a single doctor: it is about the network. "The community is really small," she said of thoracic oncologists. "If you never get to meet with a specialized oncologist that only treats thoracic malignancies, you never get to access their village of other 10, 20 thoracic oncologists that they may call to ask for opinions."

She described regularly calling colleagues to discuss patients with unusual situations, access specific clinical trials, or identify options that a patient's local team might not know exist. Spain confirmed she has seen this collaboration transform outcomes over her two decades in the field. "It's radically more collaborative than it was 20 years ago," she said.

For patients who worry that traveling to a major center means abandoning their local care team or losing the relationships they have built, the message from both advocates and physicians is the same: Patients do not have to choose. The goal is the right care for a patient’s specific cancer, delivered in a way that preserves quality of life — and both settings can be part of making that happen.