Talking Hope: Helping write the “survival guide” for others: Meet lung cancer survivor Michelle Vacca

Darrin Godin: Hello and welcome to Talking Hope. I'm Darrin Godin and I'm pleased to be speaking with Michelle Vacca. Michelle is a mother, a wife, a K-pop fan, and a survivor of non-small cell lung cancer. You may be surprised to learn that lung cancer is the second most commonly diagnosed cancer in Orange County adults where only 7% of adults smoke. Michelle's cancer was discovered by accident during a trip to the emergency room for something unrelated. She successfully underwent lung surgery, but two years later, her cancer had returned. And during a meeting with her oncologist at the time, she requested a referral to City of Hope to see if she qualified for a clinical trial being offered. Michelle's spirit, energy and optimism is unmistakable and catching, and I'm so pleased she's here on the podcast with us today. Michelle, welcome.

Michelle: Thank you.

Darrin Godin: So let's jump right in. You've said that this is one of your favorite quotes, and it's from author Brené Brown. "One day you will tell your story of how you've overcome what you are going through now, and it will become part of someone else's survival guide." What makes that quote resonate with you?

Michelle: Well, it took me a long time to, after I was originally diagnosed in 2017, in fact, it took me till November of this past year to come out of the cancer closet to where I was comfortable sharing the fact that I had cancer. I don't look like I have cancer, a lot of people don't. And only my immediate family and a small circle of friends and my coworkers even know to this day that I have cancer. And it wasn't until my stepsister asked me to speak in front of a roomful of 300 people about my story that I actually came out with my cancer. And it was funny that I was more comfortable talking to 300 strangers than letting everybody around me know. But I realized that sharing my experience might help other people write their survival guide and help other cancer patients.

Darrin Godin: If you wouldn't mind, can you tell us more about your diagnosis and your treatment?

Michelle: Sure. So like you said, I went into the emergency room in March actually of 2017 for something completely unrelated. And the doctor came out and said, "No, you're fine, but we found this spot on your lung." And turned out that what I was diagnosed with is a non-small cell lung cancer. And my current diagnosis is an EGFR exon 20 insertion mutation. Since I didn't go into the hospital for symptoms, to this day I still have no symptoms of lung cancer. They found it completely on accident, which means they caught it early, which also means that it's more treatable, more survivable. So I was really lucky to have it found by accident.

This EGFR cancer that I have is a very small slow-growing cancer, and I've been fortunate enough that all the treatments that I've had have suppressed growth. So I don't know that I'll ever be in remission. I know friends say, "Oh, great news. Hopefully you'll be in remission." I don't think that'll ever be the case, but I'm stable with all the treatments that I've had and that is a huge blessing. I actually learned from my thoracic surgeon who performed my lobectomy back in 2017. His parting words for me before he handed me off to someone else was that he just wanted me to survive. I needed to survive for the next five, 10 years because there were amazing developments in the treatment of lung cancer that were coming down the pipeline. And he just wanted me to stay alive and stay stable long enough for those to hit.

And that was really impactful to me that there was hope coming down the pipeline. I have had several lines of treatment and what's really, well, not fun to think about, but great to think about was every single treatment that I've been on since my diagnosis and after the surgery did not exist for the treatment of lung cancer prior to me being on it. When I first diagnosed, the treatments that I were on were not available. And then when my first treatment stopped working, the next one that was offered to me wasn't available when I started the first one. So I feel really lucky and blessed that everything that I've been on has kept me stable long enough for bigger and better treatments to be available.

Darrin Godin: So your journey brought you to City of Hope with Dr. Danny Nguyen.

Michelle: Yes.

Darrin Godin: What happened when you met Dr. Nguyen?

Michelle: Well, actually that was after my second treatment. It hadn't stopped working, so I was still stable, but the side effects were just to the point where I couldn't deal with it anymore. So there's a 30-day washout period. And the treatment that I was on, there were still options, so I always had something next instead of some people who don't have something pending. So I've always been that blessed and lucky and I've always had hope going forward. But during that 30-day washout period before they'll let you start the next treatment, I had heard through some Facebook support groups for my kind of cancer that there were these really great clinical trials that were available. And one of them was through City of Hope and my stepsister who works for Kure It for Cancer Research, which is a fundraising organization that supports City of Hope as one of their-

Darrin Godin: A great partner of City of Hope. Yeah, absolutely.

Michelle: Yes, bless them. She facilitated me getting in contact with the people at City of Hope that do the clinical trials. And they were amazing, but they could put me in touch with Dr. Nguyen who was in charge of several of these clinical trials that are going on. And at our first meeting, he let me know that the clinical trial that I was applying for was not appropriate for me, I did not qualify. But he had a whole stack of paperwork already for me if I was interested in this other clinical trial that I did qualify for and I immediately signed on the dotted line. He re-educated me about my whole cancer and everything that was going on, and which I was really grateful for because I don't think anybody had ever sat down and explained the processes that were going on inside me. And the fact that he didn't assume that I knew anything and just started from scratch was really amazing.

But then I started this clinical trial in April of last year so I'm coming up on my one-year anniversary and I am still stable. And Dr. Nguyen is amazing, and his research nurse, Amy King, she is just a real blessing, the both of them. I'm always in contact with them, they're always checking on me. And the whole experience at City of Hope has just been fantastic.

Darrin Godin: One of your passions now is advocacy for lung cancer research and clinical trials. So tell us more from a patient perspective about what makes clinical trials having access to leading edge cancer discoveries so crucial.

Michelle: Stable's the magic word. I know you hear remission and you hear no more cancer, but I really don't think as a cancer patient that should be the focus. I'm grateful for stable. Stable is great. I've always had hope because I've always had a treatment ahead of me and every scan that I've had, I've been stable. Now, when I started on the clinical trial, my first scan, I had reduction. For the first time ever, I had reduction and that was just magical to me. But I don't want to be unrealistic in my expectations and stable is great. Stable is the best. It lets me go out with my friends to K-pop concerts. It means that I can make plans for my son's wedding that's coming up and going and making plans with family and friends and just living my life. And like I said before, every single treatment that I've been on was not available to me before I started the treatment before.

Which means clinical trials are going forward, which means other patients are participating and the doctors and the pharmaceutical companies are developing these treatments in real time while patients are waiting for them. And I personally have benefited from all of those clinical trials and the people who have participated in them before me. So I'm so grateful.

Darrin Godin: We like to say that at City of Hope, this is where cancer loses and life wins. And what I hear you saying is because of the research that's being done here, it's allowing you to keep living life. We've not yet found the cure, but it allows you to continue to live while our researchers keep doing what they do best, which is looking for those cures. And we hope that that cure is sooner and closer than ever before, and in fact, it actually is. The story of lung cancer is changing. Like you said, so many treatments have become available that were not available in 2017 and 2018 and 2019. Something new, something new, something new because of research that's being done.

So, so important why City of Hope and our 1,000+ researchers who are focused on cancer cures and cancer research, so important why they continue to push forward and really look for the answers for people like you and me that we can continue to live life if we have this diagnosis. So thank you for sharing that. Hearing that and tying it all together, I wonder what does hope or the concept of hope mean to you, Michelle?

Michelle: Hope is that all these amazing advances are being made in lung cancer treatment and research. Hope means to me that I'm able to put my care and my cancer in the hands of experts who can focus on my specific kind of cancer and hope is what I want. Every single person who's got cancer, no matter where they are in their cancer journey, in their treatment, I want them to have hope. I want them to have access to therapies and clinical trials like I'm on right now, so they can live their life and make memories with their family and friends like I have.

Darrin Godin: I'm with you, Michelle. I'm with you and everybody here at City of Hope is with you as well. We share those sentiments and that's why we do what we do every day to make sure that, like we said, cancer loses and life wins. So thank you Michelle for sharing your story. Thank you for coming out of the closet to share your story, as you say, and sharing your advocacy, sharing your message. It's so important. So Michelle, thank you so much for sharing your story. I think it's so important for people to know because there's a stigma with lung cancer sometimes that people think it's just a smoker's disease, and with you it's not. You don't smoke, you haven't smoked. How does that make you feel sharing that and what have you experienced related to perhaps a stigma?

Michelle: I'm really surprised still that I've got friends who smoke and when I tell them, "Please stop smoking 'cause I've got lung cancer and I don't smoke." I've never smoked. And people are surprised. I don't understand why you should be surprised, but again, not being symptomatic too, if they hadn't caught it on accident, I may have had symptoms and been so far along. By the time you get symptoms, sometimes it's untreatable. And I feel really blessed that they found it early 'cause I don't fit any of the things. I never smoked, I never worked in a business that had chemicals or I didn't live near places that are traditionally cancer inducing things in the atmosphere or whatever. But it's really great that... No, it's not great that I have cancer, but that I found it early was still treatable 'cause I see all these people in my Facebook support groups that are symptomatic and they're so far along that some of these treatments that are available aren't as effective for them.

And so they're still trying to deal with the symptoms on top of dealing with the cancer. And so I personally feel really blessed that they caught it early, that there's these treatments available for me that are effective and keeping me stable. Because being a never-smoker, it's hard to explain to people the only thing you really need to have for lung cancer is lungs, right? So I wish more people would be able to get checked. I wish they could catch it before people have symptoms, before it's too late. I wish more people could participate in these clinical trials so we had better and more thorough research to get these medications to market, to really get to the people that need them the most. But gosh, I don't feel lucky that I've got cancer, but I really feel lucky that all the treatments are available and have worked for me.

Darrin Godin: Well, you've said it best. You've used the word lucky, but you always say blessed and I think that's the right word. You are blessed it was caught early and blessed to have had the treatment you've had, and you and others with this disease are blessed that research is moving as quickly as it is. And I feel blessed working at City of Hope to be able to meet people like you who represent the face of why all the work is happening at City of Hope. And I feel blessed to know that we have so many super smart people working on this day and night to find the cures that will allow you to someday say, not only have I been stable, but I've been cured. That's what we want to hear.

Michelle: Love that. Someday. Someday. I promised my thoracic surgeon that I would survive long enough for those treatments to come, and hopefully a cure. That's what we're all hoping for, right?

Darrin Godin: That's right. Thank you, Michelle. As Michelle's story demonstrates, breakthroughs in research and treatment are changing the lung cancer story In Orange County. Cancer is never easy, but it starts with hope. And as a leader in exceeding national survival rates, City of Hope is all in on ending cancer. Together, our 600 cancer physicians, 1,000 researchers and scientists, and our 800 annual cancer-focused clinical trials are what drive us forward. When it comes to cancer, it's hope first. If you need help navigating a cancer diagnosis or want to learn more about the life-saving difference that City of Hope offers, we invite you to visit us at cityofhope.org/oc or call us at 888-333-HOPE. That's 888-333-4673. Thank you all for listening, and please join us next time on Talking