Caring for a loved one with non-small cell lung cancer (NSCLC) can be an emotional and demanding process. Caregivers may find themselves responsible for a variety of tasks, both big and small, that are integral to the NSCLC care process.
This experience can be a rewarding and enriching way to support someone you love who is going through a difficult diagnosis. But a cancer diagnosis can be difficult for loved ones and caregivers as well.
To better understand what the NSCLC caregiving process entails, we spoke with Kent Smith, a caregiver and advocate with GO2 for Lung Cancer.
Kent’s wife, Debra, received a diagnosis of NSCLC 7 years ago, after the cancer had metastasized to her hip. Since then, Kent and Debra have committed themselves to helping others navigate their lung cancer diagnoses and understand what they can expect during the treatment journey.
Read on to learn from Kent about caring for a loved one with NSCLC.
Receiving a lung cancer diagnosis can be shocking for both the person with the diagnosis and their loved ones. Speaking from both his personal experience and his experience as a volunteer in the GO2 Phone Buddy program, Kent believes this is often the most difficult part of the NSCLC journey.
Kent says the initial struggle when processing a lung cancer diagnosis is often twofold. First is the weight of a cancer diagnosis and what it means. While survival outcomes have improved dramatically over the last couple of decades, Kent emphasizes that it can be difficult to process the numbers.
“If you would have told me then that we would be having a 7-year ‘cancer-versary,’ as we call it, I would have been surprised, and here we are,” he says.
According to data from the National Cancer Institute, the 5-year relative survival rate for people with NSCLC from 2012 to 2018 was
The next thing many people have a hard time processing is how their loved one developed lung cancer if they’ve never smoked.
“The whole thing caught me by surprise — we’re still wondering out loud sometimes, ‘How does a 30-year teacher at an elementary school end up with lung cancer?,’” he says. “And as we’ve since found out, if you have lungs, you can get lung cancer.”
According to the American Cancer Society, about
While a history of smoking is a leading risk factor for NSCLC, the number of people with no history of smoking who develop NSCLC and other types of lung cancer is rising. As of 2024, the Centers for Disease Control and Prevention (CDC) estimates that
Still, many people with lung cancer say they experience
Kent says overcoming these complicated emotions at the start of the NSCLC journey can be a difficult and challenging step for many people, including those who are caring for a loved one with NSCLC.
“I think that’s been the most challenging thing — getting the emotions out with a diagnosis like this,” he says. “And then after that we can try to help them over the next couple of weeks, months, or years to let them hear about everything that can be done.”
Caregivers of people with NSCLC often wear many hats throughout the cancer journey.
“I’ve been everything from a coach to a cheerleader to a shoulder to cry on,” Kent says. “I’m also still trying to do the father thing with our two adult kids, who are both having kids of their own now too.”
Another important role that Kent plays is fact-finder and researcher. He takes this job very seriously and makes sure to attend all of Debra’s appointments with her so that he can understand what she is going through and what is coming next.
“We go to every single appointment together because we hear things a little bit differently,” he says. “I’m an engineer by training, and she’s a teacher, so it’s good that we both go because then we have a full picture of what’s being said.”
Caring for a loved one with NSCLC is often a full-time job and can affect many aspects of your life. Kent says the most surprising to him was how it would affect their ability to plan, even for their short-term future. As he explained, their life now revolves around Debra’s NSCLC care and is broken out into 3-month intervals between her scans.
“Because of that, our forward-looking schedule is quarter by quarter,” he explains. “Because, as we’ve learned, some scans come back, you get the all-clear — great, you move on. But we know that there have been scans in the past, though, that have been not that good, that have required surgery or stereotactic radiation.
“So it’s been a challenge to think too long-term because, really, all you have control over is that intervening 3 months between scans.”
Living quarter to quarter can be emotionally challenging, and it can make planning travel and vacations difficult. While he was once a skeptic, Kent is now a strong proponent of travel insurance. He and Debra also travel locally to visit family and plan some short trips to nearby locations.
Kent’s number-one piece of advice for anyone caring for a loved one with NSCLC is to educate themselves as much as possible.
“For the first 3 months, as we were navigating those first steps, whether it was because we were so shocked at the outset or because it was never discussed, we pretty much had to go find information on our own,” he says.
“It was even to the point where we didn’t know what kinds of questions to ask the oncologist. Because it’s just so sudden and you’ve got the emotional side to deal with and then you’ve got the logical side to deal with, and those emotions just run all over the place from the get-go.”
When doing research, Kent encourages people who have recently received a diagnosis and their caregivers to turn to reputable resources. These include professional organizations and patient advocacy groups such as:
Kent adds, “We also spend a lot of time talking with our medical oncologist, radiation oncologist, lung oncologist, finding out what they see and making sure we are picking their brain for every little bit of information that we need, and we follow a lot of their resources.”
Kent emphasizes that it’s important to find a care team that you and your loved one are comfortable with and with whom you feel at ease enough to ask questions.
“We have literally gone and interviewed radiation oncologists just to find out who they are, what their approach is, so that we are comfortable using them,” he says.
Educating yourself and having a good relationship with your healthcare team can help you be more confident in advocating for yourself and your treatment goals.
“I think a lot of times, once the shock hits you that someone you love has lung cancer, I think your brain just kind of shuts down and you’re not going to ask a lot of questions,” Kent says. “You just go to a doctor and you say, ‘OK, I’m going to do what you’re going to tell me to do.’”
But Kent encourages caregivers and their loved ones to become more involved in the process so that they can advocate for their needs and ask questions if they have concerns. This is especially important given how much the NSCLC treatment landscape has changed in recent years.
“It is absolutely unbelievable how the treatment options have changed in the short 7 years we’ve been doing this,” Kent says. “It amazes me.”
Understanding the options and feeling empowered to ask questions can help ensure that your loved one receives the right treatment for them based on their needs and wishes.
Caring for a loved one with NSCLC is an important but demanding job. Caregivers often wear many hats and serve as both emotional support and an advocate for their loved one.
Navigating the lung cancer journey can be challenging, and it can be difficult to get started after the shock of an upsetting diagnosis. A variety of resources, from professional organizations and patient advocacy groups to national health systems, can help families understand what to expect.
These resources can help you connect with others in your area or around the country who are caring for a loved one with NSCLC. Sharing with and learning from others can help you build a sense of community, strengthen your confidence as a caregiver, and remind you that you are not alone in your journey with NSCLC.
Kent’s lung cancer journey began in February of 2018 when his wife, Debra, received a diagnosis of stage 4 EGFR-positive NSCLC. Together, Debra and Kent have navigated through the many challenges associated with this diagnosis. Through their advocacy work with GO2 for Lung Cancer and the American Lung Association, Debra and Kent have shared their experiences and raised funds needed to help improve lung cancer detection and treatment options. They are now the proud grandparents of three grandchildren with one more on the way.