Lisa B., IA

Hello! I am Lisa, a 56-year-old wife, mother of two boys, and grandmother to four, with one more on the way this year. Years ago, I got a tattoo on my foot that says, “Never say never.” The “V” letters in the tattoo are ribbons: one pink for breast cancer, representing the many friends I supported who faced the disease, and the other green for organ, tissue and eye donation, which was my career. Today, I look at those words and ribbons and realize how little I knew about lung cancer at the time. I never would have thought I would say the words, “I have lung cancer.”

I was diagnosed on Dec. 26, 2019, with stage IV lung cancer. Merry Christmas to me! There were very few symptoms besides a cough, which I attributed to a cold I must have caught from my son, who had been sick all fall.

I had a chest X-ray in October 2019, and they found a nodule. I was not concerned since they are common in the Midwest. I took antibiotics and was still coughing, but again, I wasn’t concerned; it took my son a while to get over his cough, too. They performed another chest X-ray in November, and the nodule was still there. We decided to do a CT scan just to be safe, but I was confident it was nothing. I even delayed the CT due to a work trip I did not want to miss.

On Dec. 19, I had a CT scan, and in less than two hours after my scan, the doctor’s office called me, asking me to come in to review the results. I knew right away something was wrong; doctors don’t ask to see you urgently with good news. When I got there, the doctor was beside himself. He told me I had lung cancer.

I was shocked. After the appointment, I left work, drove home in a daze and went outside on my deck, where I cried and screamed.

Never Google “lung cancer survival rates.” The statistics are pretty harrowing. While you want to beat the odds, you feel like there isn’t much you can do other than follow your physician’s recommendations. People always say, “Keep fighting, we are fighting with you,” but, in reality, my fight is all based on how well my drugs work or do not work. I don’t really feel like I have control over the results. I want to punch the cancer in the face and step on it, but unfortunately, that is not an option. I depend on research—research for causes, research for treatments and a cure.

I called my cancer “vanilla cancer” because I did not have a mutation or high PD-L1; I just had plain old lung cancer. I was put on immunotherapy and chemotherapy combinations. I went through eight different medications, lost my hair, gained 25 pounds and was thrown into menopause. My cancer was spreading further into my body, and medications were not working. I had to stop working, which created unanticipated financial strains. I have been blessed to have wonderful health coverage under my husband, so that is one worry I have not had to bear.

In January 2023, I underwent biopsies of the cancer again because it had spread further, not only in all of my lung tissue and lymph nodes but also in the bone of my cervical spine, two places in my pelvic bone and my liver. It was growing quickly. I could feel the progression and knew there was only one more drug to try, and I truly did not have much hope in that last drug. We got the results back at the end of January, and the biomarker testing showed I had the ALK gene.

Why is this exciting? Through research, they have developed a targeted therapy against this gene. With lots of hope and anxiety, I began taking an oral pill at home in February. In three months, my PET scan showed that the cancer in my bones and liver was gone, and the cancer in my lungs and lymph nodes had shrunk. I was feeling much better, too. Three months later, my PET scan showed no evidence of active disease.

The targeted therapy medication still has some severe side effects that I must manage, but I am alive. I know without a doubt that if biomarker testing had not been developed, if we did not know about the ALK gene, and if targeted therapy was not available, I would not have been able to celebrate my five-year cancerversary this past year. The targeted therapy I take is the newest one available, and the next generation of medication for me is in the research process. My hope is that the medication I am on will work until the next generation of medication is released.

While I did have to take disability and stop working, I can still do most of the things I did before, but everything takes additional time due to fatigue and other side effects. I have monthly lab checks, and every three months I have a PET scan. While my scans show no evidence of active disease, I still have cancer cells in my body that can become active at any given time. Cancer is smart, and we know mine will find its way around my current medication. We do not know when that will be—we only know that it will happen—so I live my life to the fullest, three months at a time.

I still do not feel like I am at ease or have accepted my cancer, but I feel like I better understand it and see a path forward. When I was diagnosed, I kept thinking there had to be a purpose. As I’ve navigated this disease, I have realized there are a lot of misconceptions and a lack of information about lung cancer. Now, I know my purpose is to spread awareness about lung cancer, help end the stigma around the disease, and advocate for more funding for research. This purpose helps give me control and focus on something beyond the disease itself. I know I would not be alive today without research, and my future life is dependent on new research.

I’ve always wanted to live to be 100 years old. My doctor always tells me, “We’ll get you 50 more years.” When I talk to other survivors, particularly the ones who have been surviving for several years, even before genetic markers were discovered, it gives me hope that my doctor is right and that I will have many years of quality life with friends and family ahead of me.