Dave shares his stage 1B non-small cell lung cancer diagnosis, a neuroendocrine tumor, and how he got through a lobectomy (surgery) and months-long recovery.

In his story, Dave also highlights his advocacy work and gives guidance to other lung cancer patients and caregivers on how to navigate a diagnosis, the importance of taking care of the caregiver, learning about latest treatments, the stigma of smoking and lung cancer, and how to benefit from the strong social media community.

What were your first symptoms?

I was a young guy, non-smoker, and up in Maine with a friend of mine fishing in May. It was freezing cold. I got super sick with chills while I was up there.

I got back, and it turned out I had pneumonia. I went in, saw my doctor, got a chest X-ray, antibiotics, and told to be on my way.

I remember my wife, who’s a nurse, and I both thinking that it seemed really weird that I’d get pneumonia. I had been playing basketball every day at the YMCA down the street, so I was really healthy. I didn’t smoke. A lot of us who get lung cancer never thought about it.

About 6 months later, I got sick again, and I got pneumonia again. I was thinking, “I’m 34 years old and healthy. Why did I get pneumonia again?” 

Now I was getting worried about it, so I went in and talked to my doctor with the same process. I was fortunate because a radiologist noticed that the infection in my lungs was in the same spot as it was the first time.

A lot of primary care doctors don’t think about screening for lung cancer. That’s when I got the call that I got from my doctor after that, telling me that I should go get a CT scan.

I got the CT scan because the doctor said he wanted to check why the infection was in the same spot. He thought there might be a blockage.

Describe the moment you got the diagnosis

It turned out that it was a tumor, and that’s what I remember — the day my doctor called me and said, “Dave, it’s Lee. You need to come see me. We found a tumor in your lung. You have lung cancer.” 

That’s when my life just flipped upside down because I couldn’t have even imagined that that would be what I would hear from him. Just thinking about it now, I get emotional because it was so profound. 

Those were my initial feelings about it, utter shock, but then hanging up the phone, and everything was speeding up. I thought about my boys. I had a 5-year-old, a 3-year-old, and a 1-year-old. What do I do?

Those are probably common with others getting diagnosed, feeling those emotions.

They couldn’t tell the stage, though they could a bit by the size of the tumor, but they couldn’t tell how aggressive it was. The only treatment for that type of tumor in that location was lobectomy, which is surgery.

How did you process the cancer diagnosis?

I can share something that’s probably useful for people and patients, whether it’s a neuroendocrine tumor or some other form of it. I reacted by deciding that I was going to go find out everything there was to know about that particular type of tumor. 

That was, in some ways, not the right thing to do because all I did was stress myself out. I was reading the worst possible outcomes. I was catastrophizing.

I processed it by saying I would just go and find as much information as possible. It was a very complex thoracic surgery, not really user-friendly information. 

Treatment decisions

What was the discussion like on next steps?

I had a meeting with my doctor to talk about the steps. He was like my quarterback. Also, when people are diagnosed, it’s trying to find your care team.

For me, it was going to be at Mass General Hospital because that’s where my primary care was. When my mother had a health care experience and was in a community hospital setting, she had to decide whether she’d stick with her local community hospital or travel. She was in Palm Springs, California, at the time, so she would have traveled to Los Angeles to get her care elsewhere.

The chest X-ray couldn’t define what was wrong, so the CT scan was the logical next step. I hadn’t had one before that. 

I had a pretty good understanding of what the CT scan was about based on talking to my doctor and my wife, who’s a nurse, so I was lucky about that.

Seeking out other patient experiences

There are ways to connect with other patients now, and that’s what I would encourage people to do if you get that initial diagnosis and think, “What do I do?”

That whole process of setting up a care team and making those treatment decisions. Do I go to an academic or community hospital, who’s been through the same thing I’m anticipating and who can help me?

Did you get a second opinion?

I didn’t get a second opinion. I think it’s because I felt like I was in the best place possible. My particular situation was not a complex issue. The type of tumors that I had was something Mass General had a lot of experience in.

But here’s an interesting story. I had someone contact me a year or so ago to introduce me to a friend who had lung cancer. He had gone to UCSF to get an opinion but wanted to know if he should get a second opinion.

When we connected on a call, without knowing his situation, I said, “Absolutely, if you want the comfort of having a second opinion, you should. If your doctor thinks you’re crazy to do that, that’s on him or her, because you deserve it.”

 https://thepatientstory.com/patient-stories/lung-cancer/non-small-cell/dave-bjok/