Facing Lung Cancer Together: A Patient and Care Partner Share Their Journey

Wendy Brooks, a patient with extensive-stage small cell lung cancer, and her husband and care partner, Larry Brooks, sat down with CURE to talk about their journey with the disease. They reflect on the experience of diagnosis, the role of early detection, and how clinical trials have shaped Wendy’s treatment and outlook.

Throughout the conversation, Wendy and Larry share how their family and support system have helped them navigate the challenges of small cell lung cancer, and how their experiences have inspired them to advocate for greater research funding and awareness. Their discussion offers a look at both the patient and caregiver perspective, as well as the importance of staying engaged and informed.

CURE: Can you share the moment you were diagnosed with small cell lung cancer and what that first day felt like for you?

Wendy: I had been getting screened for five years prior to my diagnosis because of my risk factors. Those risk factors included smoking, but I was also exposed to secondhand smoke, radon in the home that I grew up in, as well as environmental risk factors from work and in the home that I grew up in. Not just the radon, but we had contamination of uranium from the Manhattan Project waste. So, I was at very high risk.

On my screening that I had in my sixth year, there was a suspicious spot, and I had a three-month follow-up screening just to make sure that it wasn't anything related to a respiratory infection or whatnot. It was a nodule, but I hadn't had anything prior in the five years. And the phone call came in from that follow-up screening, from the screening nurse, and she said, "Well, it has grown, and it is cancer until proven otherwise," and that just kind of... I knew why we were screening. If something was to happen, we wanted to catch it early because your best option in fighting any kind of cancer is early detection.

What role did your family and support system play immediately after your diagnosis, and how did you begin to navigate the path forward?

Wendy: I got off the phone, and Larry was listening. He was home, and we were in the kitchen, and I remember repeating to him, "It's cancer until they prove it's not." We both just looked at each other in our eyes, and I just said, "I need you to be strong for me. I need you to help me. We're going to get through this. This is why we did the screening, to find it." And your brain just kind of goes numb, but to have somebody to share that with has made all the difference in the world.

Our daughter is a PA, and at the time, she was in the psychiatry division of the oncology department at the University where I'm being treated. So we reached out to her immediately, and she was able to not only help us with the medical side of it, but the emotional side that a cancer diagnosis brings to you, especially on that very first phone call. And she was able to kind of separate her emotions and say, "Okay, here's what's next," and helped us navigate the complicated system of testing and decisions that needed to be made and questions that needed to be asked. And that in itself was just a Godsend—to have that much step-by-step guidance. "Yes, step-by-step. Guide for that test, don't wait from the call or you call them." Yes, to get through that is just huge.

At the very beginning, I made the decision that I was going to manifest a unicorn outcome, and I was going to beat this. I didn't care what the prognosis was. I mean, she told us, "Don't Google." Of course, I did, but I think that's payback for growing up, "Don't do that," right? But I knew what we were facing with small-cell lung cancer, and I knew that the odds, the five-year survival odds, were not very good. But I chose not to believe that. I chose to manifest that spirit: "I am going to beat this," and I've let that attitude carry me through this whole journey of where we are today.

As Wendy’s primary care partner, how did you process the diagnosis and adjust to supporting her through treatment?

Larry: The first reaction was not quite denial, but it was close. I had convinced myself that everything was going to be okay; we just needed to work the program step by step, and it was all going to be alright. After her tumors returned for the second time, we had the loss of some new friends that we made to the disease. It was then that I really realized the only path forward is to provide the best support I could and pushing for advocacy — advocacy for federal funds for research to increase the survival rate.

What inspired you to transition from being a patient to becoming an advocate for small cell lung cancer awareness?

Wendy: At first, once I was diagnosed and started my treatments and started Googling those terribly bad results, I just couldn't accept that all I could do was chemotherapy and radiation. There has to be something else. I got involved in a community of small cell lung cancer patients, which then gave me more information as to different treatments that were available, mostly clinical trials, and how people were having better results than what had been published with old data, because that data does not keep up with the treatment that's available today.

That in itself (joining that community and finding that information) helped me realize we have a voice, and we need to express that voice, especially concerning clinical trials and funding for research, because lung cancer receives the least amount of funding overall, even though it accounts for the majority of cancer deaths. So it's very disproportionate. Even there are more lung cancer deaths worldwide than breast, colon, and prostate cancer combined, and our funding is lagging behind that. It's the research that's going to give us the hope and the treatments that we need. In order to have research, we need the funding.

Larry: Also, knowledge is power, right? Everybody knows the term. And with any kind of disease diagnosis comes the loss of control, and by advocating and learning about the disease, you gain some of that control back.

Wendy: I refuse to let cancer steal my joy or our joy. It's very important that we look forward and we have hope, and the new treatments that are coming on board (and I've benefited from two of them) it does make a difference, and I need to share that with the community to give back what gave so much to me. That really drives my advocacy. "Look at the results that I'm having. You can participate in these trials," and then, working as well with the pharmaceuticals, "We need to get these trials out to the community that needs them, not just let it be a privilege of the location of where you live."

It's so important that that message gets out there, and that is one message that I like to carry forward, as well as early screening. The screening is so very important with any type of cancer, but especially lung cancer. Screen, catch it early.

Additionally, we're finding that new lung cancer cases are never smokers. We need to get the information out as well. What are the symptoms? Because people are getting brushed off as, "Oh, you probably just have a sinus infection," or "It's allergies." You know your body, and you need to be your own advocate as well. I've learned that so much in this journey to share that information with folks.

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