How Self-Advocacy Can Shape Lung Cancer Care

Wendy Brooks, a survivor of extensive-stage small cell lung cancer, and her husband and care partner, Larry Brooks, spoke with CURE about their journey from diagnosis through treatment, highlighting the role importance of shared decision-making and self-advocacy in shaping Wendy’s care.

To read more from Wendy and Larry, read the full interview here.

Transcript

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.

Transcript has been edited for clarity and conciseness.

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