Introduction

I was diagnosed in December 2012 at the age of 54 with stage 4 lung cancer. I had a small lung tumor, but my liver was loaded, and it had seeded many of my bones.

My husband is a pediatrician. We’ve been married for 38 years. We have two adult children, Nathan and Nina, and two grandsons, Nori and Kai. I used to be a genetic counselor and worked in pediatrics, prenatal genetics, and public health genetics. In 2024, I retired after 41 years of genetic counseling.

I’m grateful because I have such an incredible village of friends and family who’ve supported me not only after my cancer diagnosis but also pretty much throughout my life.

My Stage 4 Lung Cancer Diagnosis

There was a small tumor in my lung. My liver was loaded and most of my bones had tumors in them as well. 

We didn’t know how my stage 4 lung cancer started at the time, but I had no symptoms. No shortness of breath, nothing. I did experience some aches when I was training, but I thought they were due to my age and physical activity, so I brushed them off.

I had no risk factors. Back then, I didn’t know that people who never smoked could still get lung cancer. I didn’t know enough about cancer itself, even about the stages of cancer. I was in that place of ignorant bliss. We were sitting with our friend who’s a surgeon and my husband was crying. I was so sad and said, “Don’t cry. Maybe this isn’t a big deal.” However, our friend said, “It is a big deal.”

That was good for me to hear. Here I was in this la-la land, thinking I could get over this and that it would go away. I got a pit in my stomach for the first time, but I wasn’t upset. I was grateful that he put it on the line like that for me. I’m a practical person and don’t want to read between the lines, so you don’t have to talk to me with a lot of fluff. Just tell me what’s happening.

I think I cried too because I was making everybody so sad. I think it’s somewhat cultural. My family is Japanese, so we want to know what the next step is with the realization that there is a circle of life and everything proceeds from one step to the next. I had this more practical approach to my stage 4 lung cancer diagnosis.

My Treatments and Further Testing

Chemotherapy

I was getting anxious that my cancer was continuing to progress and I wanted to get something going. When we got the negative biomarker test results, I started traditional chemotherapy, a three-medication regimen. 

My insurance hadn’t approved one of the medicines by the time I got to the chemo room. I would have to put it on my credit card. The cost stunned me — $7,800 for one dose. But if my insurance approved it and the practice received payment, I would be reimbursed.

ROS1 Testing

ROS1 was new at the time and back then, they thought that it accounted for about 1% of people with adenocarcinoma of the lung. I thought, okay, that means a 99% chance that I won’t have this.

When I tried to get the pre-authorization from my insurance, they declined my request because I had already undergone gene testing for ALK and EGFR. It was going to cost thousands for us out of pocket. Again, my concern was not to leave debt in case things got bad. My husband and oncologist talked me into it. They said, “If you do have it, there’s an oral chemotherapy for it.”

The good news is that I was able to get this biopsy and turned out positive for ROS1. 

The good news for me was that once I started taking this oral chemotherapy, I had tumor shrinkage. All my other biomarker tests went down within normal limits within a few weeks. 

Currently, there are some side effects that I must manage, but I’m alive and my stage 4 lung cancer has been stable for going on 12 years. I’ve been lucky. I’ve had a bad disease that I’ve managed with good medicine and a lot of luck.

In the last several years, every oncologist worth his or her weight in gold has been doing biomarker testing. When I was first diagnosed, some oncologists were hesitant about it because they were waiting to see if it panned out. I get that because there were a lot of testing things that didn’t pan out in cancer, but this one was real.

At that time, when I was talking to fellow patients, I would urge them to get a young oncologist, someone who had training in their fellowship with genetics. Now, I don’t feel the need to say that because almost all oncologists will test for it.

It’s Crucial to Have a Positive Attitude

My recommendation for those facing stage 4 lung cancer and other cancer patients is to have a positive attitude.

When I started living longer than my “expiration date,” I wanted to be the healthiest-looking sick person I know. I planned to eat right, get enough sleep, and exercise every day. What happened to me when I got this new attitude was that I almost transformed. I felt much more positive about life, that I was not going to die of cancer, and that maybe I should get mammograms and restart my statin because I could die of something else. 

So much of it is an attitude of gratefulness. I feel gratitude every single day and that feeling keeps me going for tomorrow. It is a positive way of looking toward the future.

There are a lot of people who have asked me, “Do you ever wonder: why you?” I flip that a little bit and say, “Why not me?” I feel that I’m human and vulnerable to disease, a very practical person, and a realist in terms of everybody eventually dying of something, so I never took it personally. 

It’s better for me because I think there’s so much stigma surrounding smokers. Even if I were a smoker, I still wouldn’t deserve to have lung cancer. Some of my nurses have asked me, “Do you smoke?” My response is, “No, why do you ask?”

I try to educate them that roughly 40% of us have never smoked and the only risk factor I have for having lung cancer is that I have lungs. I don’t know why I have it. There’s an uptick in Asian women who have lung cancer. Maybe it has something to do with our pollution and that kind of thing, but there’s no single thing that I can put my finger on, so why not me?