Terri shares her stage 3A KRAS+ lung cancer story, including experiencing three separate recurrences. She persevered through multiple treatments, including chemotherapy, surgery (lobectomy), and different radiation procedures, to getting to no evidence of disease!
She decided to take the feeling of helplessness and shift it into dedication to patient advocacy. Founder of non-profit group “KRAS Kickers,” she also dives into what patients and caregivers should know, as well as how she navigated her own cancer experience. Terri touches on how she broke the news to loved ones, handled parenting with cancer, and the importance of connecting to a cancer community.
First Symptoms & Tests
Tell us about yourself outside of cancer
I live in Charlotte, North Carolina, and transplanted here from Arizona and from the Chicago suburbs. I have three kids that are all adults and an amazing husband. We play some games and like football. We like to just hang out and enjoy life.
What were the first symptoms
The thing is that when you look back, historically, it makes a little bit more sense. When you’re going through it, you just think, “Oh, it’s an allergy, it’s like a cold.” I’ve had asthma intermittently throughout my life. I went back and forth to the doctor several times and she’s like, “You try doing over-the-counter stuff.” We changed up my asthma medication and still, I was really struggling. We spent quite a bit of time at the beach and it just reached the point where the humidity, it just was oppressive. We went back again to the doctor and like every other busy mom, you just push things off and push it off.
Finally, I went back to the doctor a couple of days before Christmas in 2016. By then, it had turned into full-blown pneumonia. She could hear the fluid in my lungs and treated me with antibiotics. We did an X-ray, at that point. Fortunately, from the X-ray, which is not a really good diagnostic for lung cancer, the fluid showed up and it highlighted the tumor that was in my lungs. We followed up with a considerable amount of testing.
When did you realize things were serious
When they could see the fluid, it made more sense. We went back there and saw what she was talking about, you could very clearly see there was something inside the lung.
At that point, because cancer runs in my family, I was totally convinced it was probably cancer, but I was afraid to say those words.
My doctor said results would come right back in 10 days. That’s when we went back. When I wasn’t feeling better by the first, I knew for sure something was completely wonky. Then we saw the pulmonologist, and went through a long diagnostic period. I had no idea the difference between an X-ray or CT or a PET scan or any of that. You don’t find out until you need to know. It’s really important to understand that.
Describe the CT scans
Initially, I went back and had a CT scan, and it was just very simple. You just laid on the table and the machine did all the work, and there was no prep. They could still see there was something going on. In order to prove to the insurance and all the other powers that be that we needed to extend testing past that, I had to do another CT scan, where they injected some dye into me, It’s a couple of hours and it’s simple stuff. Just lying there, the machine does all the work, nothing hard, nothing painful, very quick, very painless, except for the stress around waiting.
Describe the PET scan
The PET scan is a little bit more extensive. That’s where they do a whole-body scan, basically from the neck down. You have to do a certain amount of fasting, not eat sugar and eat all high-protein items, because they inject a special sugar inside of your body to be able to find any sort of metabolic activity, which would be something that would be indicative of cancer.
The waiting around and having the test is very stressful.
Did you deal with scanxiety waiting for scan results The scanxiety doesn’t really hit until later, now doing follow-ups and I’m four years down the road, but then you’re not even sure what you’re waiting for. When you’re first diagnosed, and I think that it was really a very stressful time for me, as it is for most people, you don’t know what’s coming, you don’t know what’s next. You’re not really sure what you’re waiting for. Am I waiting to hear that there is something there or there’s something not there? What am I waiting to hear? What am I even hoping for? It’s not like you know the rules to this game.
It is stressful and it is hard. How do you manage it? It’s like anything else. You’ve just got to do what you got to do. You want the right results and you want to get the right information. The important thing is getting it done, so you can see clearly what is there.
Describe the biopsy
It varies based on where the cancer is in your body. Mine was lung cancer so that’s the part that they had to go into. Not all lung cancers are as easily accessible as mine was.
Relatively speaking, it wasn’t as bad. I thought of my lungs like balloons, and I was really concerned that they were going to pop, to be honest with you.
They don’t, because there’s fluid and there’s other things around it. It was a little bit of prep, and I couldn’t take certain things for several days. I went into the hospital, and it was just a several hour procedure.
They stuck the needle in where they needed it to go. I got a little whacked out on the cocktail stuff they gave you, and that was it .Was there any pain post-biopsy. It wasn’t horribly painful. It was just a little bit tender, a little bit sore. It was relatively easy.
When did you get the biopsy results
My doctor was able to call me back within 48 hours of the test to let me know the results of it. He offered to either give them to me on the phone, or to have me for an office appointment. I’m not much for waiting. I already felt like I waited quite a bit.
Lung Cancer Diagnosis
Describe the moment you got the diagnosis
I was like, “Just give it to me. I want to know.” He told me that it was a non-small cell adenocarcinoma. That’s what I knew on a Friday. Even if you suspect, even if you know, even if you believe, hearing somebody actually spell it out for you, it’s still a moment that you just stop, it’s kind of that out of body moment, like being in a car accident or something. You can remember that moment, that feeling. I don’t know what I was expecting to hear. I wasn’t surprised, but he was talking to me, and it was in some sort of weird dream. You can just remember where you’re sitting and how you feel. At one point, I turned to my husband, I said, “Well, you weren’t there.” He’s like, “Yes, I was there.” Because I was so in my own head, all I could remember is just this one place, this one moment, this one thing right there. It was intense. Not going to lie. It was intense. Now, you hear it. Now you know.
Now what?
How did you process the lung cancer diagnosis
It’s really the closest I have ever been hit by a train, but that’s what I imagined it feels like. I’m looking at it this way and the train hits me out of here, and now what? Definitely, you’re confused. Now, it’s a legitimate diagnosis. It’s not all in my head. It’s not just a cold, it’s not whatever I did or didn’t do. I can’t fix this with kale or exercise. I have a diagnosis, and now what? The next morning when I woke up, and I guess I was going into shock. You’re not really sure what is, and what’s not. It’s like you try and steady yourself. I went downstairs first thing in the morning, and it was just so heavy and I couldn’t breathe. I’m thinking I must be having a heart attack. It must just be the stress of the whole event. I couldn’t get that anxiety to leave, in fact, it was more than anxiety. My husband, bless his heart, he was like, “You have to go to a doctor.” I’m like, “I don’t want to go to the doctor. I’m going to just wait.” He’s like, “No, you really need to.” So we negotiated back and forth, and I ended up back at the emergency room. I was not doing really well.
Describe the ER visit
My lungs had filled up from fluid and I was essentially drowning. That’s why my chest was heavy and hurting. In my mind, it’s still a moment of shock, and so I’m convinced that it must be stress. It must just be the anxiety of it all, of being in the hospital. Then they had to take some of the fluid out of my lungs, which is not an unusual situation with some sort of pneumonia. It isn’t a horribly painful procedure, but it is life-saving. We went through that over the course of the weekend, because now I was a brand new diagnosed lung cancer patient, and those words still couldn’t fully come out. It just didn’t come flooding into my mind at that point. We went through and met a whole medical team at that point.
Treatment Decisions
How did you decide where to go for treatment
Because of the way it happened with my lungs filling up and not doing well, I just went to the hospital that my pulmonologist and my normal PCP were at. It’s not a major research cancer. They treat cancer patients. It’s what they consider a hybrid. It’s part of a bigger system. I just went there because that’s where I always go for my healthcare needs.
It wasn’t something researched. I had trouble breathing. I went to the hospital and that’s where I was. That’s where I met the team, and met the oncologist and what have you. While I was there, they were just into the process of setting up tumor board for the upcoming week. I was the last slot to slide into the lung cancer tumor board, which they do only every other week. I was very fortunate from that standpoint. All the doctors from all the different disciplines, the radiologist and oncologist and all the different portions of it, go through your case and look at all your factors, including your age, your health, how things are, where things look like, what they are, and what are the next steps. It’s not just a one-and-done event.
Describe meeting your entire medical team
The way my clinic does it is they bring you in as a separate appointment through the hospital setting, and all the doctors from the different disciplines come to you. You have one appointment and they come to you. On that same day, my family was able to meet the radiologist, the oncologist, and the nutritionist, which I can’t even remember, a host of all of them. I was also able to meet a nurse navigator to help me answer questions.
Tip: Seek out a navigator or social worker for quality of life questions
When you’re in to see the doctor, you want to ask the important doctor questions. You don’t want to feel like you’re wasting their time or your time, and you want to get more specific information. At my hospital, there’s someone called a nurse navigator. Sometimes it’s under the social work, sometimes it’s under some supportive care network. For others, it might be called community care. They have different names, but all have the same meaning. The nurse navigator was able to point us into service areas, whether it was a support group that we needed, financial assistance if we were looking for it, understanding next tests.
She really was just a wealth of info.
It was like if I needed a mom to go to. Maybe it’s because my nurse navigator, Phyllis, was so amazing that I was just really fortunate, but I looked at her like a mom or the older sister whom I could lean into. Maybe she personally hadn’t been through it, but she could point me in the right direction. That was really helpful. She really does an amazing job because she could help you. If somebody says, “Well, you need to come back in three months,” but your doctor says, “You need to come back in three weeks,” there’s a disconnect. She can then help you figure out how to get that straight, and work behind the scenes in the administrative red tape that needs to be resolved.
Guidance on how to navigate the overwhelm of appointments
If you don’t understand, have them explain it to you. Yes, write it down, bring other people with you. We had four people smashed in a little room. Each one of my kids was asking totally different questions, things that I never would’ve thought to ask.
At the same time, it wasn’t just that they got the information, but I had them to ask later, because I wasn’t necessarily hearing everything I needed to hear at that moment. It was just a wealth of information, a wealth of knowledge, and you’re trying to take it all in.
Physically, you’re not on top of your game. It’s not like you went into this, and you’re all revved up, ready to go. You’re not feeling any good. It really makes a difference to take the notes and ask the questions.
The more I look back at it, I wish I felt less threatened to ask the questions because the doctors, the team wants to explain it to you, but they don’t know what you do or don’t understand. You need to be willing to ask them.
Did you get a second opinion
Looking back, I wish I did get a second opinion. At the time, it was, you just have to do what you have to do.
It’s like when you’re driving a car and you see, either I’m going to smash into a tree, I’m going to run over the kid. I’m better off hitting the tree than I am the kid. You’re just trying to manage what it is you’ve got going on. It’s just so much. We didn’t have the benefit of amazing shows like this, where you can listen and get other ideas, because when do you get the questions? It’s two o’clock in the morning when you can’t sleep.
You don’t get the questions during the day when you can call somebody at two o’clock in the afternoon. That’s why I talk about this, because I want people to understand, I didn’t do it right.
I didn’t do as many wrong things as I could have done, and I was very, very fortunate. Learn from the experience, take that knowledge, and ask the questions. Understand the answers. If you don’t understand them, ask again.
I didn’t do as many wrong things as I could have done, and I was very, very fortunate. Learn from the experience, take that knowledge, and ask the questions. Understand the answers. If you don’t understand them, ask again.
How did you break the news to loved ones
I don’t think there’s any way that you can easily tell your family any bad news, regardless of what it is. Telling them about cancer, telling them that I was sick, they saw that I was sick, they just still weren’t convinced it wasn’t totally pneumonia. As the pneumonia turned into something a little bit more severe, when I was put into the hospital that weekend from being filled up with fluid in my lungs, there was no turning back. They had to know, and they had to know then.
Even at recurrence, it’s still utterly the hardest thing, and I have to tell them because there are just no easy words. There are no easy words.
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