Listening to Her Body Changed Her Life: Alisa’s Story

Alisa S. resides in La Verne, CA, with her devoted husband and their two children, ages 8 and 10. Quality time is her love language, and she cherishes moments spent with family and friends. During her free time, you can find her hiking, baking, and volunteering. Alisa and her family share a passion for travel, and they actively work towards visiting destinations on her bucket list. 

Warning signs  

For a couple of years before I was diagnosed with lung cancer, I was getting chronic bouts of bronchitis that would send me to the doctor’s office where they would give me an inhaler. In early 2021, I told my primary care physician (PCP) that my chest issues were becoming more frequent and that this wasn’t normal for me. I also struggled to breathe when I exercised. I asked him if it could be anything other than bronchitis and he said, “No, you’re fine.” He told me it could be exercise-induced asthma and gave me another inhaler. I was repeatedly told that it was nothing to worry about.  

I really didn’t like the answers I was getting from him, so I decided to switch to a different PCP a few weeks later. Unfortunately, he agreed with my first doctor that my troubling health symptoms were nothing to worry about. He ran some basic labs that all came back fine.  

Taking matters into my own hands  

By July of that year, my cough was still going strong, and my husband urged me to see a doctor again. However, given that I’d be seeing the same doctor and had already been told it was nothing, I wasn’t confident it would make a difference. I decided to take matters into my own hands. A friend told me I could buy a CT scan on Groupon, and I decided to pursue that as the next step. I figured I would get CT imaging done and it would help me figure out why I’d been having these chronic bouts of bronchitis for the last couple of years. If nothing else, I thought it would set a baseline so that if something serious developed 5, 10, or 15 years down the road, I could say, “I have this older CT scan to compare it to.” 

 I absolutely thought the cause of my cough would be something benign, but the CT results showed that there was a nodule in my upper left lung and something in some of the lymph nodes nearby. In my results, they recommended that I follow up with a pulmonologist and have a PET scan. I was very concerned.

Because I had an HMO plan at the time, I had to return to my PCP for the referral. I told him about the CT scan and the mass that was found and asked for a referral, but instead of being just as panicked as I was, he read me the riot act! He said how dare I get a CT scan on my own and treated me like a hypochondriac. He told me that the findings were likely just incidental and even though it said I should follow up with a pulmonologist, I shouldn’t worry about it because I was young and healthy and living in Southern California, where almost all lung nodules are benign. 

I pushed back. It was now August—I reminded him that I had had a cough since January. I had also developed debilitating fatigue. I would drink huge coffees from Starbucks all day and still fall asleep in the afternoon. He blamed it on me being a mother of small children and advised me to “take it easy.” I left the appointment in tears. My PCP made me feel like it was all in my head and that I was just an overworked mother. It took my husband going back into his office and demanding the referral for my doctor to finally give it to me.

Finally – a diagnosis  

At the end of September, I finally saw a pulmonologist who, luckily, was so different from my other doctors. He was incredibly compassionate and recognized that something was wrong. He ordered a PET scan, a pulmonary function test, and different labs from what I had had before. The labs came back perfectly normal, but I failed the breathing test. When I left the office after that test, I asked the nurse about the PET scan I had already taken. She said, “The doctor really likes to deliver news in person, so if you haven’t heard anything yet, it’s probably nothing serious.”

I was driving home thinking, “Hey, maybe it was nothing,” when I got a call from his office. The pulmonologist said that my PET scan had “lit up like a Christmas tree” and looked like cancer. I said, “No, that’s not possible. I don’t smoke. It doesn’t make any sense. I just have a cough, and I’m just a little tired.” But he confirmed it definitely looked like cancer, and that I would need a biopsy.

Initially, they told me there wasn’t a biopsy appointment available for 2 more months, but I wasn’t having that. I got on Google and called every doctor in the area until I finally got an appointment in mid-October. They biopsied some lymph nodes and confirmed that it was lung cancer, but they couldn’t tell me the stage.  

At that point, I had had it with all of these doctors’ offices, HMOs, phone calls, and authorizations I needed. I decided to quit my job to enroll in my husband’s plan to get better care. And this whole time, my mind kept telling me to go to City of Hope, that they could help me. And so, I did. They were amazing. They ran every test I needed and on November 3, 2021, they were finally able to tell me that I had stage 4B (IVB) lung cancer. It was in my left lung, every lymph node you can imagine, and the right side of my brain. It was whiplash going from thinking I had bronchitis to learning that I actually had metastatic lung cancer. The news hit me hard. 

Some hopeful news 

I had biomarker testing which came back negative, so I was treated with chemotherapy, immunotherapy, and SRS brain radiation to start. After about 10 rounds, in July 2022, my cancer went into remission. That was amazing, but they had to pull me off treatment because I ended up getting autoimmune hepatitis that was induced by the immunotherapy. As of January 2023, I started having symptoms again. My cough returned and my shoulder started to hurt. I told the hospital, and this time, they believed me. They ordered a PET scan, which showed that the cancer was back.

They performed another biopsy and more biomarker testing. Even though the tissue biopsy sample ended up being too small, my blood biopsy showed that I had ALK-positive lung cancer. I was literally in the process of scheduling radiation because I had no more treatment options when I got the news. I didn’t know what “ALK-positive” meant at the time, but my oncologist explained that my treatment options had just opened up again. He said that in the lung cancer world, an ALK diagnosis is “winning the lottery.” He explained it like this: “You have two kids. Do you have one kid that listens better than the other?” I said, “Yes, definitely.” He explained, “That’s ALK-positive. Of all the lung cancer genetic mutations, this one just tends to listen a little better to the medications than others.”  

I immediately started taking alectinib, and I’m still on it today. I’m also arranging to have local consolidation therapy with Dr. Lee at UCLA in the hopes of having surgery in early October to remove my primary tumors and any affected lymph nodes not resolved by systemic therapy.

A new normal 

It was so hard telling my kids that I was sick. At the time, my son was in kindergarten, and my daughter was in second grade. My husband and I always said we would be honest with our children, no matter what. So, we came home from learning I had lung cancer and told them that I was sick. This was during COVID, and we talked about illness and being sick a lot at the time. They said, “It’s okay. You just take medicine, Mommy, and you will be all better.” But we were brutally honest with them and made sure they understood this was serious and might take me from them. It was a terrible, difficult conversation, but I made sure that they knew that I would do everything I could to stay with them as long as possible. 

We’re still honest with them. We tell them when I have appointments and scans; we tell them the good and the bad, as well as our fears. And even though they want to be kept in the loop, they have also asked that cancer not be part of their daily lives. And it’s not. Day-to-day, we don’t talk about it and have very normal lives. Being the child of someone with cancer is not their identity because I’m mostly a very normal mom. I play with them, go on field trips, go on vacations together, and make memories all the time. 

I heard a good analogy from another cancer survivor who said that living with lung cancer is like walking around and living your life with a gun to your head. You feel it, your spouse and your kids feel it, but you all have to pretend it’s not there. It’s just a weird way to live. In the beginning, I remember breaking down at my daughter’s dentist appointment because they wanted to schedule a return visit 6 months out, and I didn’t know if I would be here in 6 months. I lost it. Now, I trust more that I will be here. I’m willing to plan vacations in the future, make the next appointment, and things like that.  

It’s hard to imagine when you’re first diagnosed, but there is a blessing in even this terrible diagnosis. Once you get through the shock of it, you get to a point where you can either complain about it and be upset about it or move on. I have started finding so much beauty in little things, like watching my kid finish a book on their own or watching them play at the beach. For me, I just couldn’t slow down to really appreciate those things before this diagnosis. However, I’ve come to appreciate the simple things because time has become so much more valuable. In that sense, it’s been a positive change for me.  

Advice for others with lung cancer   

1. Try to connect with others. Meeting other people living with lung cancer was the first thing that helped me. I met Emily Bennett Taylor, another young person diagnosed with lung cancer, through my aunt. Talking to Emily showed me for the first time that there was some hope that I could have a good and normal life. From there, I started connecting with more and more patients and hearing their stories. They all give you a feeling of not being alone and some give you a lot of hope, 
2. Take care of your overall health. Being diagnosed with lung cancer made me care more about my overall health. That has helped me feel more in control of how I’m feeling and doing. It might sound obvious, but the better I take care of myself, the better I feel, so I try to exercise and eat well. I’ve also been going to therapy, which helps me to manage living with cancer. I recommend it to I’ve really focused on trying to piece all the parts of me back together so that I can try to fight this. 
3. Remember that you’re not a statistic. The statistics will tell you one thing about lung cancer but remember that your cancer is your cancer. It’s different from everyone else’s and will behave differently in your body than in somebody else’s body. It will respond differently to treatment. Trust yourself and your body, and don’t let statistics define what will happen. I never even asked what my prognosis was because I didn’t want it to become a self-fulfilling prophecy. 
4. Advocate for yourself. The doctors might be the most educated people in the room, but no one knows more about you and your body than you do. Stand up for what you need, and don’t let them make you feel stupid or like you’re causing trouble. If you want a particular test or more information, push for that. If you don’t know how to ask for it, then bring somebody who does. But always push for what you believe in, and don’t take no for an answer. There’s nothing more important than this.