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afatinib EGFR EGFR Lung Cancer Non-Small Cell Lung Cancer Osimertinib Patient Stories

Ivy’s Stage 4 EGFR+ Adenocarcinoma Non-Small Cell Lung Cancer Story

Ivy’s Stage 4 EGFR+ Adenocarcinoma Non-Small Cell Lung Cancer Story

Ivy shares her stage 4 EGFR+ lung cancer story, one that started at just age 47 with a lot of misdiagnoses. She details going through 2 targeted therapies, afatinib and osimertinib, and surgery, a new approach for a stage 4 diagnosis.

The mom, wife, and patient advocate also describes how she approaches life after a stage 4 lung cancer diagnosis, including topics like managing the cancer like a chronic illness, tending to mental health, navigating marriage and parenting with cancer, and her lung cancer patient advocacy work, including co-founding the group EGFR Resisters.

Ivy timeline
  • Name: Ivy Elkins
  • Diagnosis (DX)
    • Lung Cancer
    • Stage 4 (metastatic)
    • EGFR+ (epidermal growth factor receptor)
  • Age at DX: 47
  • Treatment
    • First-line treatment
      • Targeted therapy #1: afatinib (Gilotrif)
      • 3 years
    • Second-line treatment
      • Targeted therapy #2: osimertinib (ongoing)
      • Surgery

I have gotten very involved in advocacy and am knowledgeable about the research and trials and treatments that are coming along. That also helped me feel a little bit better about things as they’ve progressed.

There are a lot of good options out there, and more are being developed. That has helped me a bit, too. I try to focus more on living each day and what I can accomplish that day, as opposed to worrying tons about the future.

Ivy E.
Table Of Contents
  1. Ivy's Story on Video
  2. First Symptoms
  3. Getting Diagnosed
  4. Treatment Decisions
  5. First-Line Treatment: Targeted Therapy, Afatinib
  6. Second-Line Treatment: Targeted Therapy (Osimertinib)
  7. Surgery (Lobectomy)
  8. Navigating Life with Cancer
  9. Your Work in Patient Advocacy

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Ivy’s Story on Video

Video #1: First Symptoms & Getting Diagnosed
Video #2: Describing Treatment
Video #3: Navigating Life with Cancer & Patient Advocacy

First Symptoms

First, tell us a bit about yourself

I live in the suburbs of Chicago, northwest of the city, with my husband. In about a month and a half, he and I will be celebrating 25 years of marriage.

I have 2 boys. One of my sons is 20 years old and is a sophomore in college. My other son is 18 and is a senior in high school right now. 

How did you know something was wrong?

Around the middle of 2013, I just started having some issues with my right elbow. I couldn’t completely straighten it, and it hurt a little bit. The left side of my neck also was bothering me a bit. Initially, I didn’t think anything of it, but it didn’t go away.

I went to see my primary care physician. He took a look at me and said I was 47 years old and thought it might be my computer and iPad usage. He thought it was an overuse injury.

To be honest, I just completely agreed with him because it seemed that made sense. I had been active, healthy, and never really had any problems. 

He sent me to physical therapy and did all the right initial things. He had an X-ray done of my elbow, which showed absolutely nothing wrong, and an MRI done of my neck, which showed nothing other than the typical deterioration that comes with being a little bit older. 

You went to a lot of appointments

For about 6 months, I went from physical therapy to visiting an orthopedist, getting a cortisone shot in my elbow, seeing a rheumatologist, and seeing multiple physical therapists.

No one could really figure out why my elbow, which they had deemed tennis elbow at this point, wasn’t responding to any of this treatment. My neck, oddly enough, started to feel better, but my elbow didn’t. 

How did you mentally manage the search for answers?

I was actually getting kind of frustrated because I was being really good at following everyone’s recommendation for the next doctor. I was doing all of my physical therapy exercises, getting my cortisone shot, and following up, but nothing was improving.

On the other hand, there was a little piece of me that kept thinking, ‘Do I keep pushing forward?’

My husband and I talked about it. He talked about the problems with his knee and that that was “his thing” now. He suggested maybe this was my thing for getting older, that this would be my “weak spot.”

Part of me was wondering how far I’d keep going in terms of going to doctors and trying to figure things out, but it just all seemed odd. The whole elbow issue kept getting worse, not better. I got to the point where just putting my hands up to wash the back of my hair hurt. 

I was 47 years old, and it just didn’t seem right. I kept going and was determined to figure out what was going on. It took a good 6 months!

Getting Diagnosed

How did you start getting answers?

Eventually, I ended up at an orthopedist who specializes in the wrist to the shoulder. He did an MRI of my elbow because he was trying to figure out what was going on.

He saw there was a mass in there that was on the joint and looked like it had eaten away a little bit of the bone in the area. He didn’t really know what to make of it, so he sent me to an orthopedic oncologist. 

Describe the orthopedic oncologist visit 

When I went to the orthopedic oncologist, I was already terrified because the word “oncologist” is in the name. I went with all my various reports.

When I first saw him, he thought I looked healthy and was in good shape. He said to me that if I presented differently, he would think that this was a metastasis possibly from somewhere else. 

But he said he was really 90 to 95% sure that this was a benign condition called a giant cell growth. He said he’d do a biopsy. No rush to get that scheduled. They’d go in and take a look at it.

If that’s what it was, they’d take it out, and I’d be good to go. All that happened, but it wasn’t benign. 

Describe the elbow biopsy 

The biopsy wasn’t bad. They didn’t put me under general anesthesia. They gave me a twilight drug, so while I was awake, I wasn’t really too concerned about anything going on. 

The actual procedure was quick. I remember having to put my arm in a certain position and hold it there. They took the cells that they needed, and after a brief recovery, I just went home. It wasn’t particularly painful afterwards, and it wasn’t something that I felt was particularly traumatic.

Did you experience anxiety waiting for results?

I was pretty nervous after I had the elbow biopsy. Even though my oncologist had said he was pretty sure that it wasn’t going to be anything, I was still nervous. It took a good amount of time before I had results back, a couple of weeks or so.

The thing that complicated everything a little bit was that I was having all of this done in between Thanksgiving and the winter holidays, so things slowed down.

It was hard to get in touch with people. I was preparing for the holidays myself, with 2 kids who were going to be home and out of school. It was a really, really stressful time.

»MORE: Patients describe dealing with scanxiety and waiting for results

What were the results of the scans?

The results came back from scans that the mass was malignant. It came back as adenocarcinoma, which doesn’t originate in the bone. They knew at that point that the cancer I had came from another part of my body.

I remember asking the orthopedic oncologist where adenocarcinoma came from. He said either the lungs or the breast.

Initially, I was convinced that I had breast cancer. I had no idea that lung cancer was something I could get. I didn’t know what I know now, which is you only need lungs to get lung cancer. I didn’t think I had a risk for lung cancer.

Recall the moment of the diagnosis

It was actually a call that I received. My oncologist called me and wanted me to go into the office and set up an appointment, but I already knew why he called.

It’s not good news [when] an oncologist, who already said he thought it was probably benign, tells you he wants you to go into the office to get the news.

I convinced him on the phone to just tell me what was going on. That’s when I had the conversation about how it was malignant and adenocarcinoma. It was over the phone.

My stomach dropped. I don’t know if “shocked” is the right word, because I always knew there was a possibility it could be cancerous. I was very, very shaken by that news. I almost didn’t even know what to do next. It was a nightmare coming true.

Did you break the news to loved ones? 

My husband was with me when I found out at home. At that point, I didn’t tell anyone. I didn’t tell my parents. I didn’t want to tell anyone yet because I had no idea what it was.

I wanted to get more information about where it came from and at least have the PET scan, which was the next thing that was scheduled, before I told anyone.

It was slightly complicated by the fact that my kids were young and somebody needed to watch them and get them to school when I went downtown to get to early morning appointments. I do remember telling a couple friends that I needed to get some tests done for my elbow, but I didn’t go into detail at that point.

»MORE: Breaking the news of a diagnosis to loved ones

Describe the actual PET scan

It didn’t take that long for me to get the PET scan scheduled. It was within the week. 

Before you actually have the physical scan, you need to get an IV in your arm so that they can put in this (iodine-based) contrast material. That’s how they can see what areas in your body light up that have cancer, basically.

I went in, got my IV, had the contrast injected into the IV, and then I had to sit for about an hour in a room so that there was enough time for the contrast to spread throughout my body before the actual scan.

It was painless. You don’t feel any of that other than the stick of the IV. It’s a bit stressful because you’re sitting there by yourself, waiting for the scan.

The scan itself is relatively painless, too. It doesn’t take all that long. I laid down on a stretcher-type platform, went into the machine, and the scan didn’t even take longer than 30 minutes. Then it was done.

Thrust into a whole new world, overwhelmed by new terminology

This was the beginning of a whole new language. All of a sudden, people were talking about PET scans, getting contrast dye injected, and other scans I might need, like CT scans and brain MRIs. It’s overwhelming to go from being a normal, everyday person to entering the world of oncology.

There’s a lot of terminology you need to learn about. You’re learning about this at a time that you’re at your most vulnerable, because you’re terrified about what’s going on as it is. It’s hard to take all of that in.

Do you recall when you got the full diagnosis?

After the PET scan, I didn’t have to wait very long to find out the results. I found them out the same day while I was still in the hospital, treated in a major medical center in downtown Chicago. It was a quick process.

I remember my husband and I went back after lunch, and then we found out the results of the scan. 

I sat down with the orthopedic oncologist. He told me that they found from the PET scan there were some areas in my lungs that had lit up, almost a 3-centimeter mass in my upper right lung, along with some small nodules, but that was the main area.

He also said they found the elbow mass also lit up, so it was also cancerous, as well as an area in my neck, where I had experienced my neck pain. There were a few other bones that did, my rib and my pelvis.

He said that was considered metastatic lung cancer and the next stage would be for me to talk to a thoracic oncologist. He referred me to someone and said he wanted to get someone from that department in the hospital to come in and speak to me that day. 

It was over the holidays. My PET scan was on December 26, and it just wasn’t possible to get anyone to talk to me right then because a lot of people were on vacation. 

How did you process the stage 4 lung cancer diagnosis?

My husband was there with me. To be honest, a lot of it is really a blur. I know we went home. I know I pretty much didn’t really want to talk to anyone. 

I know my husband called his family, called my parents, and told them about the cancer diagnosis. It was a school day, so then my kids came home from school, and we didn’t want them to know what was going on yet. I had just been diagnosed. I didn’t know what my treatment was and what was going to happen.

We put on a fake smile on our face and went on with our regular day. It was almost surreal. I don’t remember a lot about those few days.

I was just trying to process everything and was very upset, crying tons, but also feeling like I wanted to hide that from my kids. It was a crazy time.

»MORE: Patients share how they processed a cancer diagnosis

Genomic testing for biomarkers

I didn’t know this, but once they had determined it was lung cancer, my hospital, Northwestern, automatically sent my sample for molecular testing. Since this was back in 2013, they didn’t test for as many things as they test now. 

They tested for EGFR, ALK, and KRAS. I didn’t know any of that was going on until I got a call from the nurse who works with my new thoracic oncologist, whom I hadn’t even met yet because my appointment was set for January. The nurse called me a couple of days before that appointment.

She was calling and getting my information. She asked if anyone had talked to me about molecular testing, and I said no, though I’d done some reading about it.

The nurse let me know that I had the EGFR mutation, which she said was a good thing because they had drugs and medications that I could take that could target that in the form of oral pills.

This is before I even met my thoracic oncologist. While it didn’t completely calm me down, it did make me feel like there was some hope. 

It also changed completely how I thought my treatment would be.

Treatment plan: targeted therapy

Initially, as a person without a background in science and oncology, I had never heard of targeted therapy. I thought that my treatment was going to be what you think of when you think of someone with cancer. You have chemotherapy, you lose your hair, and you’re sick. 

I found out from the nurse that it would be a very different type of treatment. That was the one bright ray of sunshine that clicked in before I actually met my oncologist.

Did you consider a second opinion?

I did not consider a second opinion. I was introduced through mutual friends to someone who lives 20 minutes away from me who’s also living with lung cancer, a woman about my age who’d been diagnosed a few years before me. She’s very involved in advocacy.

I talked to her right after I was diagnosed. She was the one who told me about mutations and targeted therapy, so I had somewhat of an idea of what molecular testing is when I spoke to my oncologist nurse. 

She had also told me about who some of the best thoracic oncologists were to see in the area and even helped me get an appointment with Dr. Patel at Northwestern, who was my oncologist. I felt very, very good about the person I was seeing.

Treatment Decisions

What was the treatment plan?

I had mentioned that I found out I had an EGFR mutation on the phone with a nurse before I went into the office. When I went for my first appointment, Dr. Patel suggested I have a few more tests, one of which was a brain MRI, which I hadn’t had at that point. 

That’s when I found out that I also had 8 small lesions in my brain, in addition to the bone involvement.

As a result of all of these additions, Dr. Patel decided that it would be a good idea for me to speak to a neurosurgeon and to a radiation oncologist in the hospital before we made the final decision about starting me right away or not on an EGFR targeted therapy medication.

Jumping from appointments to the next

During one very, very long day in the hospital, I ended up going to talk to a neurosurgeon because it turns out that the pain that I had in my neck, which was one of my early symptoms, was the result of a pretty large-sized tumor.

It was really high up on my cervical spine that didn’t show up in the initial MRI of my neck that my primary care physician had ordered. 

When they got better visuals of that area, they realized that where it was located could actually cause my cervical spine to become unstable and possibly even collapse, which would not be good for my survival.

The neurosurgeon talked to me about the pros and cons of having surgery before I started on treatment for my EGFR mutation. That was one of the visits that I made that day. 

Then I also went and talked to a radiation oncologist that day, who talked to me about the pros and cons of having radiation on some of those brain metastases after starting my targeted therapy.

I think the concern there was that if there were 8 small lesions that could be seen on the scan, there might be more lurking that might not even have showed up on the MRI. She gave me the impression that at some point, I might need to do whole-brain radiation. 

I went to those 2 appointments and went back to Dr. Patel. I started that day being somewhat terrified, and I was beyond terrified by that time. 

My husband was with me, so I had that support. To tell you the truth, it was just so overwhelming. I have to say I am very glad that I had all those conversations, and I’m glad all those doctors weighed in with their opinions and Dr. Patel talked to them.

They really figured out what would be the best approach by speaking and working together. I’m so glad that happened.

Final treatment decision plan

It turned out that Dr. Patel felt that by starting me on a targeted therapy for my EGFR mutation, which she explained to me could basically shrink the tumors or even have them disappear, that that might take away the brain metastases and reduce the tumor in my cervical spine. 

The concern with my cervical spine was whether that tumor was actually keeping my cervical spine from collapsing. That’s where the neurosurgeon came in. 

Guidance to other patients and caregivers on treatment decisions

When I was first diagnosed, I felt fortunate I found a doctor whom I really felt like I trusted. From the moment I talked to her nurse and the moment I talked to her, I felt she knew what she was talking about. I had verified that with the other lung cancer survivor I had met. I trusted her.

She listened to my questions and tried to get to know me as a person. I decided at that point in my day that I needed to go with that trust. I needed to allow the oncologist and her clinic to coordinate all my appointments and tell me what I needed to do next.

That worked for me, but I don’t know if that would work for everyone. It depends on who your initial doctor is, whom you start with. 

Also, there was really no time for me to get a second opinion because of this concern about the lesion on my neck. I listened to her. I left the hospital that day with a prescription for my targeted therapy, while wearing a neck brace. 

Why did you have to wear the neck brace?

I had to wear that neck brace for 3 months. That was the concession to the neurosurgeon. If I felt the slightest bit of pain or increased pain in my neck, I would go back and see him.

I did have to have regular follow-ups with the neurosurgeon for a while, every couple of weeks, just to see how my cervical spine was doing.

First-Line Treatment: Targeted Therapy, Afatinib

Describe the targeted therapy (afatinib)

It was a once-a-day oral medication. I took it every night before bed. I had to make sure that I didn’t eat for 2 hours before I took the medication, so no late night snacking after dinner. I had to make sure about that.

In terms of taking it, that was the only restriction. 

What were the targeted therapy drug side effects?

There were side effects that I experienced. Very common side effects for these type of TKIs are rash, diarrhea, dry skin, and split fingernails or even the skin around your fingers. 

At least at the beginning, I experienced all of those. Again, I have to say that my oncologist was very thorough about letting me know what to expect and what I could do from the very, very beginning to try to be proactive and get ahead of those side effects.

I gargled with mouthwash for mouth sores, I had a prescription to put on the rash if it developed, and I also had an antibiotic to take to prevent it from getting worse upfront. I went into treatment armed very, very well with ways to deal with and handle the side effects that I could develop.

It wasn’t that difficult of a process for me, but I was also very fortunate that I developed what seemed to me to be a good number of side effects, but a mild case for those side effects. Over time, I learned how to get out ahead of them. 

How effective was the afatinib?

The bone in my neck that they were very concerned about grew back. I still remember a couple months after visiting my neurosurgeon, he said they wouldn’t have to do surgery. He said there was a profound improvement in my cervical spine, so that was amazing. 

All of my brain metastases disappeared! The small nodules on my lung disappeared, while my main tumor shrunk a good amount but didn’t completely go away. 

I felt pretty good. Those results continued for close to 3 years.

Managing cancer as a chronic illness

That’s exactly how I was approaching the lung cancer. I had to go back every 3 months during those initial 3 years for scans, and I still do.

In between scans, I pretty much would live a normal life. I was able to do things with my kids. I was driving places and seeing friends. It was a totally normal life.

You were living an active, normal life on the targeted therapy for 3 years

My family and I traveled a lot during those 3 years. I’ve always loved travel, so we went on several trips. I can’t remember which trips were prior to the afatinib’s efficacy slowing or stopping, but we did some fantastic trips.

We went to Puerto Rico, Iceland, Caribbean, to Mexico. We’ve done some really amazing trips! We continued traveling.

I got very involved in advocacy and traveling for lung cancer advocacy work as well. It really did not put any sort of damper on my activities.

Second-Line Treatment: Targeted Therapy (Osimertinib)

What brought you back to treatment?

In the middle of 2016, my oncologist moved from Northwestern to University of Chicago, so I went with her. My first scan of my lungs after that transition looked like I might have a little progression.

We weren’t completely sure because scans were being done on different machines and being read by different people. That sometimes makes things more difficult.

Describe the liquid biopsy

Liquid biopsies had started to become a thing. I had a Guardant360 liquid biopsy to see if anything would show up. Nothing did. The results of the liquid biopsy came back, and it was like I didn’t even have cancer. Literally nothing showed up.

It’s basically a blood test. You get a couple of extra vials of blood taken beyond the regular labs when you go in for a visit.

They send it away to a company that can look at that blood and see if they can cut mutations from cancer cells or pieces of DNA that are actually floating around in your blood. 

If they find something, it’s fantastic because you don’t have to have a more invasive biopsy. But if they can’t find something, it’s not necessarily that the cancer isn’t there.

There are false negatives with liquid biopsies, where sometimes people are considered non-shedders, where their cancer doesn’t really shed those cancer cells or parts of cancer cells.

Frequently, if you are just beginning to have disease progression or you have a type of cancer where you don’t have tons of it in your lungs, you might be a non-shedder. That came back, and there were a lot of inconclusive results at the beginning.

Describe the lung tissue biopsy

Some time passed, and I went for my next scheduled CT scan. It looked like there still was some more growth. My oncologist scheduled me for a lung tissue biopsy, where again, this was an outpatient procedure, just a day procedure.

I went in, had twilight medication, and had a biopsy needle put into my lung to take out some tissue. I had that tested to see if I had developed some new mutation that might be able to be targeted with another type of targeted therapy.

What’s the T790M Mutation?

During the time I’d been treated at the beginning, a new drug went through trials and developed to treat T790M, which is a very common secondary EGFR mutation that people get who are treated with some of the original targeted therapies for EGFR, like afatinib and others.

When my results came back and they said I had the T790M mutation, I was able to go on this new targeted therapy medication, osimertinib. 

Describe the osimertinib, second targeted therapy drug

I went on that and had a fantastic response to that one as well. The tumor in my neck and brain metastases had never come back since the beginning, but I had a remaining primary tumor in my lung.

That tumor ended up shrinking 50% from the size it originally was. While it hadn’t shrunk that much with the afatinib — it stayed stable — on this second drug, it had really decreased in size until it was about 1.5 centimeters. 

Over what period of time did the tumor shrink?

It happened pretty fast, within the first 3 months. Then the tumor remained stable for an incredibly long period of time until I had surgery.

You’re still on the osimertinib

I’ve been on osimertinib now for a little over 4 years. My changes in treatment sort of went along with my oncologist changing hospitals.

At the very end of 2019, my oncologist went back to Northwestern from University of Chicago. They were all promotions for her. It was all in the Chicago area, so it wasn’t difficult for me.

But those switches did make things a little confusing in terms of my scans. When she changed locations, there was a question about whether there was progression in my lungs or not.

Still, nobody knows the answer to that, but a lot of time had passed at that point. I was 6 years out from my initial diagnosis.

Surgery (Lobectomy)

Surgery was brought up as next treatment step

While I was first diagnosed, no one would ever suggest a stage 4 lung cancer patient have surgery.

It was becoming an option for some stage 4 patients to be able to have more of an out-of-the-box treatment, meaning surgery or radiation, of their primary tumor in order to hopefully improve the patient’s overall survival.

Initially, when it was questionable whether my primary tumor was growing again, my oncologist asked how I felt about getting my primary tumor radiated since it was the only place that has even grown in my entire time since diagnosis.

I thought that was a good idea. It went to tumor board at my hospital. They came back and said I was a candidate for surgery. I decided if I was a candidate for surgery, I’d rather do that than radiation because I could [take out] an entire lobe of my lung out, where all of the cancer was, and hopefully not have side effects that might come from radiating that area of the lung. That’s what I ended up having done just about a year ago from today.

I had surgery, my upper right lobe removed, and as a result of that, became no evidence of disease (NED). It’s a year later, and I still have no evidence of disease!

How did you feel going into surgery?

Right before the lobectomy, I had to do a special bronchoscopy, even though I had a PET scan also prior, to make sure nothing lit up anywhere other than the primary tumor. They wanted to make sure there was no cancer in any of the lymph nodes outside of my upper right lobe.

That was the first thing because they wanted to make sure that if they were going to take out a portion of my lung, they wouldn’t find cancer somewhere else. That would negate the benefit.

I went to the hospital that day with my husband, changed, and got my IV. There I am with my surgeon (picture below) and her physician’s assistant (PA). This was general anesthesia. 

It ended up actually being a 4-hour surgery. They removed my upper-right lobe. By the time I came out of surgery, they had me up and walking probably within an hour or 2.

I spent a total of 2 nights in the hospital. Getting up and walking a lot was key to both pain management and getting my lung capacity up again. 

I won’t say it was pain-free, but I was so glad I had the surgery. I really am.

Guidance for others on recovering from surgery

There are 2 things to say here about that. I tend to be a person who usually doesn’t take pain medicine. I was given a lot of advice before the surgery. People said, “If you feel pain, you need to take that pain medicine before that pain becomes overwhelming.”

I did do that. I made sure to take advantage of the pain medicine that they were giving me. I was trying not to be a hero and tough it out. I think that made my recovery a little smoother.

I also made a big effort to get up and walk like they told me to, both in the hospital and once I got home.

I walk even to this day 30 minutes daily on the treadmill. I couldn’t do that right out of the hospital. In the beginning, I was walking 5 minutes on the treadmill, and that was enough, but I kept it going.

I’ve never been a marathon runner, but I don’t really notice any long-term impact on my lung capacity.

My advice would be to take your pain meds and walk as much as you can.

How was it hearing that you were NED?

No evidence of disease was never something I thought I’d ever hear when I was diagnosed. Stage 4 lung cancer, you don’t think you’re going to hear that.

It is amazing to hear. Does it mean the cancer will never come back? We don’t know, but it is hopefully going to last long enough to push things a little bit down the road. If it does come back, hopefully there will be newer and better treatment. Fingers crossed, it doesn’t come back. That’s always the hope. 

Describe the ongoing treatment

My follow-up hasn’t really changed. I’m still taking the osimertinib because no one really knows what would happen if I stopped taking it in terms of brain meds and the lesion on my neck.

Since I really don’t have any side effects from my second targeted therapy, there’s no real advantage to getting off of it at this point.

I’m still on what’s termed “active treatment,” so I still see my oncologist every 3 months. Every 3 months, I have a CT scan of my neck and my chest to check my lungs and check that lesion. Every 6 months, I have a brain MRI. That’s the ongoing treatment at this point.

Navigating Life with Cancer

Describe living with cancer as a chronic illness

The whole living with my cancer, there is still a lot of uncertainty that comes with it because you still are living between scans. I do have to say earlier on in my whole my diagnosis journey, I probably experienced more anxiety between scans and getting ready for my next scan than I do now. 

It’s twofold. It’s after you’ve been living with something for more than 7 years, it’s hard to sustain that amount of anxiety. Also, it helped me knowing that I’m currently no evidence of disease. That helps a little bit.

In addition, just the fact that I have gotten very involved in advocacy and am knowledgeable about the research and trials and treatments that are coming along. That also helped me feel a little bit better about things as they’ve progressed.

There are a lot of good options out there, and more are being developed. That has helped me a bit, too. I try to focus more on living each day and what I can accomplish that day, as opposed to worrying tons about the future. 

I’m not saying that’s an easy thing to do. I’m over 7 years out. I’ve had a while to work on that — and a good amount of therapy — to work on that and figure it out, honestly.

Changing my mindset in that way has really helped me in managing the fact that I am living with these ups and downs and constant uncertainty and more anxiety. Then you have your time between scans, where things quiet.

How did you take care of your mental health?

I think it is critical to make sure that you take care of your mental health, as well as your physical health, if you go through something like a cancer diagnosis.

You shouldn’t feel in any way ashamed or like you don’t want to ask for help because, my gosh, a cancer diagnosis is a big deal. People shouldn’t feel like they need to know how to handle that.

If anything, it’s a huge, huge stressor. I cannot imagine having been able to handle living with lung cancer for over 7 years without having a therapist, without being on an antidepressant.

It has really helped me be able to keep myself in a good, stable mindset, in addition to being stable with my cancer so that I could live a good and balanced life.

You don’t want cancer to become your entire life. I’m able to talk about other things and be here for my husband, my kids, my friends, and my 89-year-old mom.

I can’t underestimate the impact of taking care of my mental health because it’s made it so that I’m not just surviving with cancer.

I’m actually living my life fully with cancer. I don’t think I would’ve been able to do that if I hadn’t made that a priority.

How to navigate marriage post-diagnosis

You have to have patience with each other, and you have to talk about things. It was very hard at the very beginning when I was first diagnosed. For him, his wife had just been diagnosed with lung cancer.

I also couldn’t drive because I was wearing a neck brace, and I was a stay-at-home mom at that point. He had to take over a lot of things that he hadn’t been doing. He had to help coordinate rides for our kids and do a whole bunch of other stuff that I wasn’t able to do for a while. On the flip side, once I started feeling better, I wanted all that back.

That was also difficult because he had gotten used to being an active helper, and then all of a sudden, I didn’t want that anymore. Those are things that can cause stress in anyone’s marriage.

In order to get through things like that, we just learned that we really had to talk it out, try to understand how each of us was thinking about things, and try to put ourselves into each other’s shoes. With a lot of patience, we’ve managed to work through issues like that when they arose.

How did you take care of your children while going through treatment?

Once I had that conversation with my oncologist nurse when she told me that I was going to be on an oral medication, that’s when we decided that we were going to tell the kids what was going on.

They were 10 and 12. We wanted to make sure that they knew that there was a plan and what the plan was going to be.

We sat down and told them, which to be honest was probably one of the most difficult things that I’ve ever done in my life, because you feel like you’re ripping their innocence away.

They’re kids, and they never think anything’s going to happen to their parents. Then they found out that I had lung cancer.

We have always tried to be honest with them but not give them information until we know the next play.

Even when I progressed, until I knew what was going to happen, there was no need to go into all of those details with them. We answer any questions, open questions, and all that, but we try not to create concern without addressing what the next plan is.

We also found early on that the boys didn’t really want to ask me questions about what I was going through. They wanted to ask my husband instead because they were afraid that they would upset me or they would say it the wrong way. They tended to go to him more and ask questions about what I was going through, but that was fine.

Again, 2 boys, 2 different personalities. One was more comfortable talking about things; one wasn’t. You have to take your cues from that and address each child with what they need. You might have to go to ask, “Do you have any questions? What are you thinking, and what might just be blurting it out in the breakfast table?” You have to go with their cues.

»MORE: Parents describe how they handled cancer with their kids

Did you seek out connections in the lung cancer community?

I wasn’t ready for it when I was first diagnosed, because different people are ready to connect with others at different times. I needed some time to just grieve.

I think the fact that my life was going to be different from what I expected, that’s when I needed the cancer community. In general, I am more of an extrovert.

After a certain period of months, I reached back out to the woman who I had been introduced to who lives near me. She also has lung cancer and is now one of my dearest friends and partner in advocacy.

Through her, I ended up getting connected with the LUNGevity Foundation, which is a patient advocacy group in lung cancer. They had a local walk that I participated in and met some people locally initially.

Then after some time, I went to one of their big summit events they have each year in Washington, DC, and met some more people. As that occurred, I met more people who were part of the lung cancer community and living with lung cancer.

I actually began to feel an even more sense of hope and potential for my future because I was meeting people who were living well with lung cancer, who were living very long-term, good lives.

Your Work in Patient Advocacy

How did that community relationship-building shift into advocacy?

I started to learn about advocacy opportunities and how I could help other people, which made me feel like I had a purpose. That was really important to me, too — to take what I had learned from talking to other people who had helped me along the way and pass it along to others.

That’s why I first got involved in advocacy. As time went on in advocacy, I found that what I really, really liked was learning more about the research.

Now, just quickly about my background, I have absolutely a completely non-scientific background. I was an English major as an undergrad. I have an MBA in finance, so there’s no science other than the required classes.

Once I was diagnosed with the disease, I wanted to learn all about it. Then once I learned as much as I could through attending conferences and things like that, I wanted to be able to help.

There were various different programs that you can participate in as a patient through the Department of Defense as a consumer reviewer, through ASCO and ACR, where you can help provide your patient perspective and research. I started doing those programs.

Talk about the patient group you co-founded: EGFR Resisters

In 2017, along with 6 other patients and a caregiver, I co-founded the EGFR Resisters Lung Cancer Patient Group, which is an advocacy group completely patient-founded and patient-driven for people like myself who have EGFR-positive lung cancer.

We pretty much are an online patient community. We’ve grown since our very beginnings of just 7 of us to about 2,500 people now from 75 different countries. We have a closed Facebook group where members who are patients and caregivers can interact, learn from each other, support each other, and learn to advocate for themselves.

We share tons of information in this group about things like second opinions, clinical trials, symptom management, and everything. We also are trying to help accelerate research in our own type of lung cancer.

We’ve partnered with other advocacy groups and industry organizations to actually do research on our own disease and also to raise funds to sponsor additional research.

It’s been a very, very fulfilling way for me to get involved in the lung cancer community and both make a difference in other patients’ lives and then hopefully in the ultimate detection, diagnosis, and treatment of lung cancer as well.

You’re proof of the importance of advocacy and pushing for better treatments

If it wasn’t for this research, I wouldn’t be here right now. I fully know it. I had the benefit of these 2 targeted therapies. Both were FDA approved literally months before I started taking them. Surgery is still a cutting edge thing to do in stage 4 patients.

I can see what difference these research and developments can make for people. I can’t tell you how incredibly important I feel like it is to focus and promote more research.

Top issue #1 in lung cancer research: resistance to treatment

One of the biggest things is resistance to treatment for any type of treatment you have, whether it’s targeted therapy, chemotherapy, or immunotherapy. Eventually, somehow the cancer figures out a way to change — not always, but very, very frequently — and get around the treatment, making it necessary to find a new treatment.

That’s a big issue right now in cancer research. We keep developing new treatments to tackle resistance, trying to figure out what’s driving the resistance and how to tackle it.

There’s also starting to be more and more studies on:

  • Why is resistance happening?
  • What is it?
  • Are there some cells that just can never disappear, that go into a sleep mode, and they’re called persister cells that then pop up later on?
  • What causes that to happen?

That’s a really, really big topic in lung cancer right now.

Top issue #2 in lung cancer research: precision medicine

I think the other really big topic is just an increased use of precision medicine. There are more and more different subsets of lung cancer that have been uncovered, and different types of lung cancer are treated differently.

Not every type of lung cancer responds the best to the same treatment. There’s been a lot done in terms of finding different mutations like EGFR, like I have, but there’s also work being done in terms of immunotherapy and how to find out which are the best candidates for responding to particularly different types of immunotherapy.

I really think that another focus right now that we’re seeing in lung cancer is narrowing down who responds the best to certain treatments so that people who are diagnosed can start with the best treatment right upfront. 

More attention now on rarer types of lung cancer

People are paying more attention to some of the rarer types and subsets of lung cancer, like small cell lung cancer. It’s often very, very deadly but hard to treat.

I’m starting to see a lot more about small cell lung cancer in development. Squamous cell lung cancer is another one. Leptomeningeal disease, which affects the brain and is difficult to treat.

Advances in some of these more difficult-to-treat subsets of lung cancer — those are becoming more and more important and being looked into with increased amounts of research as well.

Final message to other patients and caregivers

The biggest message that I can share is the message of hope, to tell you the truth. Things have changed so much in lung cancer in the 7 years since I was first diagnosed. 7 years isn’t that long in the grand scheme of things.

When I was first diagnosed, immunotherapy didn’t even exist. It was like science fiction. People were talking about it, but they didn’t know what kind of promise that would have. Half of the mutations that are now being tested for in lung cancer hadn’t even been discovered yet.

If you go another decade back beyond my 7 years, all lung cancer patients were pretty much dealing with the same 1 or 2 chemotherapy drugs. In such a relative short time, we have come so far.

This is a good time to be a lung cancer patient. If you end up being a lung cancer patient, there are so many developments, and there are so many new ideas. Patients are living longer and better with lung cancer because of these new treatments. There’s such a potential for more upcoming treatments.

Check out Ivy’s group: EGFR Resisters website

Thank you for sharing your story, Ivy!

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Non-Small Cell Lung Cancer Stories

Yovana

Yovana P., Invasive Mucinous Adenocarcinoma (IMA) Non-Small Cell Lung Cancer, Stage 1B



Symptom: No apparent symptoms

Treatment: Lobectomy of the left lung

Dave B., Neuroendocrine Non-Small Cell Lung Cancer, Stage 1B



Symptoms: Two bouts of severe pneumonia despite full health
Treatment: Lobectomy (surgery to remove lobe of lung)

Terri C., Non-Small Cell Lung Cancer, KRAS+, Stage 3A



Symptoms: Respiratory problems
Treatment: Chemotherapy (cisplatin & pemetrexed), surgery (lobectomy), microwave ablation, SBRT radiation

Heidi N., Non-Small Cell Lung Cancer, Stage 3A



Symptoms: None; unrelated chest CT scan revealed lung mass & enlarged mediastinal lymph nodes
Treatment: Chemoradiation

Tara S., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)



Symptoms: Numbness in face, left arm and leg

Treatments: Targeted radiation, targeted therapy (alectinib)

Categories
Alecensa (alectinib) Lung Cancer Non-Small Cell Lung Cancer Radiation Therapy Stereotactic body radiotherapy (SBRT) Targeted Therapies

Stephen Huff Stage 4 ALK+ Non-Small Cell Lung Cancer Story

Stephen Huff’s Stage 4 ALK+ Non-Small Cell Lung Cancer Story

Stephen Huff was diagnosed with non-small cell lung cancer (NSCLC) before he was even 30. In his in-depth story, Stephen, who helps with lung cancer patient advocacy, shares his treatment of targeted therapy and radiation therapy, the stigma of lung cancer and smoking, and family planning after a cancer diagnosis.

  • Name: Stephen H.
  • Diagnosis (DX)
    • Lung cancer
    • Non-small cell lung cancer (NSCLC)
    • ALK+ mutation
  • DX Age: 29
  • 1st Symptoms
    • Shortness of breath
    • Pain while talking (jabbing sensation)
    • Wheezing at night
  • Treatment
    • Targeted therapy
      • Oral TKI drug: alectinib (brand name Alecensa)
      • 4 pills taken twice a day
      • Ongoing
    • Radiation therapy
      • SBRT: stereotactic radiation therapy, also called stereotactic external-beam radiation therapy
      • 5 sessions altogether
Stephen H timeline

Attitude directs you in life and how you view things. It gives you perspective.

It gives you the opportunity to look beyond your circumstances and to help others.

Stephen H.
Table Of Contents
  1. Video: Stephen on Getting Diagnosed
  2. First Symptoms, Tests, and Scans
  3. Lung Cancer Diagnosis
  4. Video: Stephen's Treatment
  5. Treatment (Targeted Therapy)
  6. Radiation Therapy
  7. Video: Stephen's Reflections
  8. Reflections (Quality of Life)

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Video: Stephen on Getting Diagnosed

Introduction to Stephen

I grew up in Tennessee. In the Southeast, sports is more than just sports. It’s a way of life. I grew up playing sports my entire life, specifically baseball.

I was fortunate enough to play at the college level and even more fortunate to get drafted by the Chicago White Sox. Sports has been a big part of my life.

There are so many lessons that you learn. You learn about things like work ethic, persistence, all these various things that are tools you put in your tool belt moving forward as an adult.

I love talking about my journey, specifically as it relates to my athletics background. 

I grew up in Tennessee. I live in Franklin now. In my college and professional years, I lived almost everywhere. I think I lived in a total of about 15 different states at one point or another. That was just through sports and traveling!

I am here now. My roots are here. My wife and I have started our family. Everybody always asks if we wear cowboy hats and cowboy boots to work, and we don’t. We don’t ride horses. 

We are the music city. I won’t say we’re the country music city. We’re known for country music, that’s for sure, but it’s a great place to live. I look forward to spending the rest of my life with my family locally here in the Nashville area.

First Symptoms, Tests, and Scans

What were your first symptoms?

I was in a transitional state of my life. After my college baseball playing career was over and I got drafted, I really transitioned myself into a different level of sports, working out, fitness — whatever you want to call it.

When my playing career ended around 2013 to 2014, I joined the rest of the real world in a normal job. I just assumed it was normal to gain weight, get out of breath, and just not be able to do some of the things I was used to being able to do.

I started to notice my very first symptoms in 2015. The reason I can remember is because I was in graduate school and student teaching in Georgia, where I was also coaching baseball.

I began to have shortness of breath. I think because of the timing of the year and all of the things I mentioned before, I just assumed it was allergies or something normal, that this is what happened to normal people.

When I think about it in hindsight, I obviously can self-reflect and say that was the first sign that something was off with my body. 

When did you finally go to the doctor?

I lived with this shortness of breath for some time. I would even get to the point where I could code it, I could keep it discreet, and I could talk around it.

The best way to describe it is I would be talking, and it would feel like someone was jabbing me in the stomach. It would cause me to cringe my stomach up, and I just learned to deal with the symptoms.

Our bodies are so unique and fascinating in that way. Our brains, once we acknowledge something, we can forget about it and continue on. We do this with more than one thing like shortness of breath. We do it with other ailments.

I carried this on for at least a year, possibly two years, until I started to get really, really wheezy. That’s the best way I can describe it. When I would lie down in bed at night, it sounded like there was fluid in my chest.

I remember lying in bed looking at the ceiling, not able to sleep, and my wife said, “Stephen, I really think you should go to the doctor. It’s not normal. It’s beyond keeping you awake at night. Now it’s keeping me awake at night, so I think you should go see a physician.”

What happened at the first medical visit?

Thinking nothing of it, I didn’t even think to make an appointment with my primary care physician. At the time, I had a scheduled appointment, but it was at least around 10 or 11 months away.

I didn’t even think to call and to try and push it forward. What I did was I went to a walk-in clinic. I complained about breathing, and I complained about the wheezing at night. 

They prompted me to get a chest X-ray, which yielded a diagnosis of bronchitis. The nurse practitioner said I had bronchitis, gave me some antibiotics, and said I should be fine.

I distinctly remember walking out of the parking lot, thinking in my head that I’d never had bronchitis, but I was pretty sure it wasn’t bronchitis. It might be, but something inside of me was telling me that it was more than that. 

You scheduled an appointment with a specialist

About 2 or 3 weeks later, I scheduled an appointment with a specialist. I wanted to go see an ENT, or ear, nose, and throat physician. For some reason, I had always thought this was allergy related and thought that was the right physician to see.

When I saw the ENT, he gave me a full examination. He also, along with the fluid in the lungs, could feel a hard nodule above my right collarbone. You know how they do the inspection; they check your neck. That was the second alarm bell.

With insurance, nothing is easy, and nothing is straightforward. I had to do a second X-ray before I could do any further testing. That’s when the ENT doctor sent me to do an X-ray, which yielded nothing except possible pneumonia.

I’m sitting here with a bronchitis and pneumonia diagnosis. I still have no answers, and I’m not getting better.

Self-advocating for more testing to get answers

I called the physician to ask if there was further testing that could be done, specifically with the nodule in my neck. When we have these nodules, bumps, and what have you, we check the internet and try to find as much information as possible, which leads to all of this fear and anxiety.

After reading the internet for several hours on end, I decided that I needed to get that nodule checked. We had an ultrasound. That was the third diagnostic test done.

What happened with the ultrasound and CT scan?

The ultrasound result was inconclusive. I don’t remember specifically getting any kind of negative feedback, but I do remember getting an inconclusive follow-up. It was at that point that we had checked all of the boxes to finally get the chest CT scan approved. 

The chest CT scan is what ultimately threw up the alarm bells, the whistles, the lights. It was the imaging that actually set off the fire alarm for the lung cancer.

How did you get the CT scan results?

I remember that I had gone to Cracker Barrel, which in the South is a very popular restaurant. I was celebrating my first summer as an educator and soaking it in.

On my way home from the restaurant, my phone rang. It was the doctor telling me that my CT scan was not good. They didn’t know what was going on in my chest and my body, but they said it appeared to look like cancer.

When did the possibility of cancer really sink in?

He said I needed to go into his office as soon as possible and drop everything I was doing. I remember distinctly filling out the paperwork, and the last question on there was if I had a living will. That was the defining moment. That’s when it all sank in that this was real. 

That this was not only real, but something life-threatening.

As a cancer patient and survivor, I think the worst part is the waiting because it’s the unknown. That’s when your mind starts to race, and you start imagining things. You have all these ideations of things. 

The CT results yielded a lot of things. Basically, there were several suspicious areas in not only my chest, but also in my abdomen, my neck, and my pelvis area as well. 

That was probably the realest, scariest moment of the entire journey because up until this point, I was in my own brain. This was all arbitrary and miniscule. I was healthy, young, fit, and this was not something that I had taken seriously up until that point.

I’ll never forget, as a new teacher, I had just finished my first year as a teacher. I’m on cloud 9. I’m starting my first summer as an educator, which is the best part of teaching.

I had all of this happen the day after the last day of school. For me, this was a black cloud. It was very traumatic. 

How did you process the initial bad results?

With lung cancer, we ordered a Foundation test, a biomarker genomic sequencing test. It takes 7 to 10 days. That period was a nightmare. I was not sleeping.

When someone tells you you’re sick, sometimes you feel more sick. It was very mental for me in that regard because up until that point, I had been so healthy.

I’d been going to the gym. I was exercising, not as rigorously as I used to, but then I couldn’t. I started to feel sick and feel worse. The combination of those 2 things was really, really hard for me to deal with. 

Describe the ultrasound-guided core needle biopsy 

When they found this nodule in my neck, they sent me to an interventional radiologist. They took an ultrasound remote and did an ultrasound-guided core needle biopsy.

Essentially, they find the nodule and try to get as much tissue sample as possible. When they send that off, the first result that comes back is whether or not it’s cancer, and if so, what kind of cancer.

If it is cancer, they take the remaining core tissues and start the gene sequencing to see the mutation arrangements and the biomarker testing. All of those things can dictate your treatment options. 

The biopsy is not the usual procedure for lung cancer patients

For lung cancer patients specifically, I am a rare case in the sense that I had a lymph node sitting right there on the surface level of my skin that they could access with a needle. Most patients do not have that luxury. Most patients never have that.

The standard procedure is usually called a bronchoscopy, or what they may call a VAT (video-assisted thoracoscopic surgery). They sedate you in an outpatient procedure, go into your lungs, and scrape from the inside of your lungs. You’re asleep the entire time.

I’ve heard that procedure can be good or can have some side effects. I was a rare case in that I had a nodule sitting right next to my neck that they could easily access, leading to a core needle biopsy.

Describe the imaging tests you had to undergo to be staged

A lot happened on June 1st. I received my diagnosis, and I also had to be staged. To do this, they wanted to do not only a PET scan, but they wanted to do a full MRI for the head, neck, thoracic, lumbar, and sacrum.

If you’ve ever had an MRI, you know it is not the world’s greatest experience! I did one with and without contrast. Each section was 15 minutes, twice, so I spent a good 2.5 hours in an MRI tube just to get staged, along with the PET scan.

Describe the PET scan

The PET scan is a little different. They give you the glucose and the liquid form of radiation to spot the cancer. That was a little less invasive than the MRI.

Lung Cancer Diagnosis

How did you finally get the diagnosis?

I was passed off to the oncologist based on something in the ultrasound result. It was still speculation at that point. I didn’t even really know what an oncologist was. I was like, “Is that a specialist?” 

I think that was the safe move at the time. When I got the results from the CT scan, it just further validated that I had a lot going on in my body. 

After we got the results from that CT scan, the oncologist then ordered the core needle biopsy to confirm what that node in my neck was. We did that at the end of May. I found out on June 1st, 2017, that I had adenocarcinoma of the lung, stage 4 lung cancer. It was non-small cell lung cancer, which is the most common type of lung cancer. 

Describe the moment you heard it was cancer

When I went in on June 1st, it was pretty much all set in stone. I had made up in my mind that it was cancer. It was the worst-case scenario. 

The physician presented the treatment options. We talked about treatment, but I don’t remember a whole lot after hearing, ‘Unfortunately, it is cancer.’

It’s such a surreal experience. It’s so hard to remember everything because it’s something you’re not equipped to deal with.

»MORE: Read different experiences of a cancer diagnosis and treatment

You had to wait for the gene sequencing results for the full diagnosis

We still had to wait for the remaining results of the core needle biopsy to see if I had a targetable mutation-driver of my tumors before I could jump straight into treatment.

How did you pass the time while waiting for results?

My advice would be to just find something to occupy your brain. For me, idle hands are the worst. When I sit at home and don’t do anything, I go crazy.

I have to find something to do, even if that means I really don’t want to do it or I’m in the worst possible mood. Just getting up and going for a walk or a hike with my wife, getting my mind off of “what if” or “if this happens” or playing all these scenarios out in my head, it helps. It helps with scanxiety, too.

»MORE: Dealing with scanxiety and waiting for results

Your genetic mutation: ALK+

In lung cancer, there is a pretty short and long list, depending on whom you ask, of how many mutations you can have.

The most common are EGFR and KRAS. Mine was ALK+,which is only in about 5% of non-small cell lung cancer cases. It’s definitely the minority. 

When I heard that, I was not happy because I thought there would be no drugs available, and they’d kick me to the curb. I was shocked to find out the contrary.

When I found out I had this ALK (anaplastic lymphoma kinase) mutation, I learned there are a lot of drugs specifically for the ALK+ rearrangement.

That was so encouraging to me! That was the first encouraging bit of news through the diagnosis. 

How did you process the cancer diagnosis?

It’s going to sound weird, but I think for me, I didn’t want to show weakness. I didn’t want anyone around me to see how much of an impact it had on me. 

Your friends, family, and all your loved ones will halo around you and tell you you’ll be okay. “We’ve got this. Strength in numbers!” You’re like, “Yeah!” I put up this bit of a façade, but inside I was thinking I was going to die tomorrow. That’s how I dealt with it.

It was really hard for me because growing up in sports or in anything in life, you’re always told the harder you work, the better the results. The more you push yourself, whether in the gym or weight room, the more repetitions and time you spend there, you’re going to be successful.

This was the first obstacle in my life where I didn’t have something tangible I could push myself through. That was extremely difficult. 

I love to be the driver of my own car. I love to be the person in control of my life. That was such a hard reality for me to face. One of the things cancer does more than anything is take away the feeling of control in life.

Slowly but surely, it was a day-by-day process for me. Once I got my diagnosis, I immediately hit shock and then denial. I thought, “This is not me. This is not going to happen to me.” 

Then I started to feel bad for myself. That was probably the darkest time. I had a gap of about 3 weeks from the time I was diagnosed to the time I actually started treatment. Those 21 days were extremely hard, the hardest days of my life.

My life had literally been turned upside down in the blink of an eye. I didn’t transition out of that until I started treatment on June 22nd.

How did you break the news to loved ones?

Pretty early, we decided to share with our family and friends, specifically our immediate family. They had been pretty involved, like my mom, my dad, and my wife’s parents. All of us knew of the situation. 

My wife and I waited about a week until we started to tell the rest of our family and friends because when you’re processing something like this, you can never think of the best way to word it, to phrase it. Sometimes you try to give yourself a little bit of time to digest before you start to tell everyone. 

If you do it immediately, you can open yourself up to not being able to fully digest it. It’s an important step. You need to understand your diagnosis and your treatment options. If you skip that and go into the next step, sometimes you can take steps back.

Any tips for others on how to share a cancer diagnosis?

Do it on your own terms. I liked the idea of calling my friends and telling them. I felt a little uncomfortable when people will call me or text me or send me messages. You cannot control that, and people just want to help innately. 

My best advice would be to find a place where you can gather your thoughts and get away, even if it’s to get away from your spouse, parents, or best friend in the entire world.

Go for a walk or a couple of walks. Go somewhere you can gather your thoughts, think a little bit, and think about what you want to say and how you want to say it, because it is important for you mentally to have an approach.

That was my approach, and that was how we decided that we were going to step forward with this.

»MORE: Breaking the news of a diagnosis to loved ones

Video: Stephen’s Treatment

Treatment (Targeted Therapy)

Did you consider a second opinion?

I did not advocate for myself in the beginning because I have always fallen into the mindset that doctors are the smartest, they know everything, and I just listened to what doctors say. I am so grateful for all the amazing doctors we have in this country. 

What I will follow that up with is that it is always a good idea to get a second opinion, even if you don’t think you need one. It’s always a good idea just to get someone else’s advice. I wanted to explore and find out. I wanted to see what else was out there.

Even though there was nothing wrong with my first oncologist, I did get a second opinion. I’m glad I did. The second doctor I spoke with really resonated with me, really spoke things on my level, and helped me understand, giving me so much hope.

If I had never made that decision to reach out and get a second opinion, I think it would have changed my path and my journey. Here I am today, with my same oncologist whom I’ve been with for 3.5 years.

2 oncologists with different treatment recommendations

My oncologist who gave me my diagnosis, who told me to get my port, wanted me to sign up for a trial because before my results had come back, he was almost sure that I was going to be an EGFR mutation. That was based off of my demographics, including age.

He wanted me to sign up for an immunotherapy trial. I felt an immense amount of pressure to agree, to sign up, and to put my name on the paper to get started. I wanted to start. 

When I spoke with the second physician, she was a contrarian. She didn’t think I had the EGFR at all and thought I had the ALK+ based off of what she’d seen in my reports. Thankfully, she was right, because it changed my entire treatment course for the better. 

I love talking about my treatment course because it was something I had no idea about in targeted drugs, as it relates to cancer patients and cancer journeys.

Targeted therapy drug: TKI (tyrosine kinase inhibitor)

As a completely ignorant young adult, I had only assumed that treatment was chemotherapy or radiation therapy. You did both or one or the other.

My oncologist presented the idea of what’s called a targeted drug, specifically a TKI (tyrosine kinase inhibitor). This was something my family and I had never heard of.

This is an oral drug you take twice a day. It allows me to live a completely normal life. I’ve been on this drug for 3.5 years now and still going. I’m actively on treatment.

To know this drug exists is one thing, but to have it impact my life in such powerful ways is something I’m so grateful for, because this drug was FDA-approved just months before my diagnosis. 

It saved my life. It’s truly something I’m grateful for. 

How did your oncologist describe the targeted therapy drug regimen?

For non-small cell lung cancer patients who have the ALK+ rearrangement, there was a first-line treatment called crizotinib approved in the early 2010s. It was the first drug of its kind, and it saved a lot of lives. 

Then my drug, which is called alectinib or Alecensa, is actually a second-line drug that’s FDA-approved for first-line treatment.

The first time my doctor brought up this new drug, she said this would make me feel better within a few days. Of course, I took that as, “There is no way. I don’t know what the world she’s talking about, but there’s nothing that will make me feel better in just a few days.” 

She said I needed to take the drug twice a day, 8 pills in total, and to take them with food. The only thing she said they would do is make me feel a little tired, and I might gain some weight as a side effect. I said, “Sign me up!” 

What are the alectinib side effects?

Knock on wood, I have had little to no side effects.

I’ve been on this drug for 3.5 years, so that’s almost 42 months. I was told, sitting in my doctor’s office, that this drug was so new and it worked for about 34 months.

The cool thing is that number keeps moving as I keep moving. I’m a science project. I’m happy to be a science project because I’m still on the drug, and I’m still here.

Thankfully, I’m probably very lucky in that regard. I know some other patients on the medication who don’t take it as well and have to take a smaller dose. For me, I have had no issues. 

I will say it is a little toxic to the liver, so I have to get my liver tested every 3 months, give or take. I also have to minimize my alcohol, which is probably a good thing anyway. I can still have a glass of wine, but I can’t have 3 or 4, which is a good thing.

You started feeling great soon after starting treatment

I started my medication June 22nd. I have to be honest, I felt amazing after 3 days. I felt like my old self. 

What I mean by that is my wheezing was completely gone. My breathing was back to normal. I didn’t have the feeling like someone was jabbing me in the gut.

I knew then that this drug was working. I could tell it was working. When I went in for my first scan around 60 days after I started the treatment, I had a complete response.

Every tumor on my previous scan had shrunk. Some had disappeared completely. That was the validation I needed that this was working, it would work, and that I have a real chance to beat this.

You were able to go back to work

I started teaching again in August. We start school the first week of August, so life continued. In the South, we start school in August. We don’t wait until Labor Day.

Managing the cancer like a chronic disease

That’s the best way to describe it: I’m dealing with it like a chronic illness. When I was first diagnosed, I had to wrap my brain around this idea of chronic disease. 

I’ll explain it in the best way I know possible. Growing up, the only thing I knew about cancer was that you want it out of your body. It needs to be gone completely, cut out surgically, whatever.

When my physician told me because I was stage 4 and because they’d seen cancer spots not only in my lungs but other places like my liver, my spine, my sacrum, and my chest lymph nodes, surgery wasn’t really an option. 

Surgery may be an option some day down the road, but for the time being, my oncologist wanted me to not necessarily think that just because the cancer was still in my body. It was wrecking my body.

She said I could live with it. If they could keep the tumors under control, keep them from growing, and keep them stable, I could live a completely ordinary life. I agreed that was a good option when she put it in layman’s terms like that.

I view my disease as a chronic illness that we manage. I hope someday I may be a candidate for surgery or may have some various options, but for the time being, I’m completely satisfied with where I’m at in my treatment.

Paying for the alectinib

When I got the bottle in the mail, of course I had done research and tried to find out everything I could about this alectinib and what it was. I found out that it’s not cheap at all. It is about $11,000 and $13,000 a bottle if you were paying out of pocket.

I’ll be the first one to admit that being a teacher, we have great insurance, and that’s part of the deal. I’m very, very blessed in that regard. I have a max out-of-pocket, which I hit every year. I typically hit my deductible in January, depending on when my first oncologist visit is.

Thankfully, all of my testing was covered. The only thing I can remember that was not covered up front and right away was the foundation biomarker testing. That was simply because my insurance provider hadn’t had a negotiated agreement.

We’re talking about new, innovative testing that can dictate the long-term survival of patients that isn’t necessarily set up yet. We’re still learning about all the genomic sequencing. Thankfully, my insurance provider did end up covering that because that was very expensive.

In the end, I have a small copay of a few dollars for my pills, and it comes every month. I get a call from my pharmacy. They ask me how I’m doing and if I’m ready for a new bottles of pills.

Advancements in lung cancer treatment

In lung cancer specifically, there have been more advances in the last 5 years than there were in the last 50 years. That is so amazing to me.

Anywhere and anytime I can talk about treatment options as it relates to lung cancer in general or just cancer treatments in general, it’s so encouraging. 

There’s so much hope. There’s so much to be hopeful for. To think if I were diagnosed 6 or 7 months before, I may or may not have gotten the same drug that I had gotten since. 

It makes me even more grateful, so for newly diagnosed patients, whether you’re lung cancer or other various cancers, just take all the old numbers and throw them out. 

All the new numbers aren’t reflected yet in terms of what these new treatments can do, specifically targeted drugs and immunotherapies.

Radiation Therapy

When did your oncologist suggest undergoing radiation, and how did she characterize the treatment?

I had a tiny nodule that appeared to be slowly growing. The growth was so slow. It was something like 1 millimeter every 3 to 4 months.

After several months, maybe even a year, of surveillance, we decided to radiate the single node with 5 rounds of SBRT. The radiologist recommended that we radiate the primary or largest tumor as well due to the proximity.

Describe your radiation therapy regimen

I had 5 sessions in total, around the same time every day. After the initial scan to pinpoint the location, my body was marked up with stickers and dots. These were to align me in the exact position for every session.

The only thing that I can remember about the radiation sessions was expecting a laser to drop from the ceiling, similar to something from a James Bond movie. That was not the case!

The treatment itself was relatively quick, less than 10 minutes. Setting up took the longest. My arms would fall asleep from holding them above my head for the entire duration.

It is such a precise therapy, down to something like half of 1 millimeter. The setup needs to be perfect before hitting the big red go button.

What were the SBRT radiation side effects?

Relatively none for me! I did have some fatigue initially, but I did not experience any short-term side effects aside from that.

I did, however, experience pneumonitis several months after the SBRT. Pneumonitis is exactly like pneumonia but without the infection. It is inflammation of the lungs. Each ensuing scan did show scaring and eventually fibrosis.

Around 16 months after this SBRT treatment, my right-middle lobe did eventually entirely collapse. This full collapse is because of the scarring, but it is not as bad as it sounds because we have several lobes, and other lobes will expand to make up the difference.

I cannot tell a difference that I am one lobe short and still very thankful to have several other healthy lobes.

Any guidance on getting through SBRT?

It is not as scary as you may think. I think we are apprehensive about the unknown. For me, that was this preconceived notion that a laser will burn me or cause long-term damage, but my experience was pleasant.

I am still amazed at the precision of these machines. I would highly recommend SBRT to any patient that is considering this as a treatment option.

»MORE: Read other patient experiences with radiation therapy

Video: Stephen’s Reflections

Reflections (Quality of Life)

Being your own advocate as a patient

Sometimes we fall into the mindset that this can’t happen to us or that’s not going to happen to me. For me personally, there’s a self-defense mechanism. When I read about people who are dealing with severe diseases or anything, I tend to distance myself. I put up a halo. I don’t believe it’ll happen to me. It’s not me.

When I started to become symptomatic, I immediately thought nothing was wrong. I kept telling myself that over and over and over. But I knew, deep down, something was a little off in my body.

If I had swallowed my pride, if I had not been afraid of what the actual diagnosis or prognosis would’ve been, I could have probably given myself a little bit better of a position in dealing with lung cancer.

When I could remember those first symptoms, I think about that a lot. What if at that time it was still early stage? What if it was stage 1 or 2, and it was operational? How would that have changed everything? Of course, you can drive yourself crazy doing that as well.

Take that with a grain of salt, but the most important advice I can give to anyone in terms of self-advocacy is that nobody knows your body better than you. It’s so important to seek out answers.

If you don’t like the answers you’re getting or you know they’re not right, try to find someone else.

Walking out of the parking lot in January of that urgent care center, I knew I didn’t have bronchitis. I knew something more was going on there, but at the time, I let the voice in the back of my head not speak up. If I can give anyone advice out there, it’s to step up and find answers. Don’t give up.

»MORE: How to be a self-advocate as a patient

Dealing with the stigma of lung cancer

I love talking about this because being a teacher gives me the opportunity to inform someone who might not be aware of some of these stigmas.

When I was first diagnosed with stage 4 lung cancer, in my own head, I thought I was the bill of health. I was 29 years old. Up until that point, I had always taken care of my body. I had never smoked or anything like that, so to get a cancer diagnosis was so shocking.

To get a lung cancer diagnosis was insane. Completely out of left field. I just assumed because of my demographic, everyone would know it was a freak accident.

Well, that wasn’t necessarily the case. What I mean by that is typically when I share with someone my journey about lung cancer, their first response is, ‘Did you smoke?’

I have no problem with someone asking me that because it gives me the opportunity to educate, but I think that question presents a stigma. We have always been told that you get lung cancer from smoking, that smoking is the only cause of lung cancer, and if you don’t want to get lung cancer, stop smoking or never smoke.

The reality is between 30 and 40% of newly diagnosed lung cancer patients are either never-smokers or have quit for a long, extended amount of time. I think there are a couple different narratives we need to change.

One, we need to change the narrative that lung cancer is a smoker’s disease. We need to address the fact that if you have lungs, you can get lung cancer. Even young never-smokers or not-smokers still get lung cancer.

The second narrative we need to address is that no one deserves lung cancer! It sounds silly, but no one deserves any type of cancer. Even if someone does smoke, I don’t think it’s right morally for me to say that they brought it on themselves. 

As anyone who’s in the health industry knows, yes, tobacco is the leading cause of lung cancer, but it’s also the leading cause of other cancers and can contribute to other cancers, as well as other diseases, including cardiovascular.

When you go in to get an EKG or you’re a diabetic, you’re not scrutinized. You’re not asked whether you smoked or, “Did you bring this on yourself?” The narrative needs to shift.

As a human race, we need to empathize with lung cancer patients. We need to say, ‘Whether you smoked or not doesn’t matter. ‘

We just need to support you, and we need to understand that lung cancer patients need research and treatment options, just like every other cancer patient does.

How was it being an adolescent young adult (AYA) cancer patient?

The first thing I did was I scoured the internet trying to find some stories of hope. I wanted to see someone beat lung cancer, and it’s hard.

It’s hard in our lung cancer community to find those things, or maybe it was when I was first diagnosed. It’s getting much better. The reason is when you look at the statistics of lung cancer, specifically late stage or stage 4, it’s not very encouraging.

When I was diagnosed, I was told the survival rate was about 16%. When I heard that, that was very discouraging for me. That was about 4 years ago.

Now, it’s already up to 21%, which is highly encouraging. It’s not where we want it, but it’s great. It’s because of these new therapies and new drugs. 

When I think about a newly diagnosed patient and advice I could give them as far as finding a community, there’s a lot of great resources out there now for lung cancer that weren’t available when I was diagnosed.

Finding those resources, which can be located on various lung cancer nonprofits, but also finding a group or individuals who have walked the path. For me, that was through social media. 

If I can see someone has done something, beat a cancer, or they’ve lived 5, 10, 15 years with cancer, that gives me hope.

I can ask myself, ‘If they can do it, why can’t I do it?’ I think that speaks volumes to the mind, the mental game of beating cancer.

How did you plan for the future (family) while dealing with a late-stage cancer diagnosis?

One thing I love to talk about in my journey is starting a family. Receiving my diagnosis, talking about my medication and my treatment options, the last thing on my mind was starting a family.

My oncologist, whom I love dearly, told me she wanted me to think about the option or at least have the option to start a family, because once we started this drug, I wouldn’t be able to naturally conceive.

I looked at her like she had 3 eyes. I was like, ‘You think that’s what I’m thinking about right now? All I’m thinking about is living tomorrow. I just want to make it.’

My wife and I went home and talked about it long and hard. It was something I didn’t have any interest in, but I am so grateful that we made the arrangements. 

About 2 years into my journey with lung cancer, after several good stable scans, life started to feel much more normal than I would have ever expected. I think it’s because when you are handed a diagnosis, your life just flips upside down. 

Doing things that got me back into a routine, like work, traveling with my wife, doing family get togethers, and going and doing things with my friends, slowly but surely I started to feel normal again. I got to a point after 2 years where I felt normal enough to explore the options of starting a family.

Thankfully, I am so grateful that I did. If I had been as stubborn as I was with my diagnosis and I didn’t have someone advocating, I might not have had the chance to make those arrangements.

We welcomed our son into the world, scientifically, through IVF in January. He is healthy, he is happy, and he is the light of our worlds. 

Stephen & Family
Describe how you approached fertility preservation 

Right before I started taking my targeted drug, alectinib, my oncologist said if I wanted to eventually start a family, I wouldn’t be able to while on the medication.

She highly recommended I go to a fertility clinic and do the sperm bank just to have the option down the road.

»MORE: Fertility preservation and cancer treatment

That’s when my wife and I went home and discussed it. I was not into the idea at all. That was the last thing on my mind. I was so angry that I couldn’t even think about it.

Thankfully, I let it sink in for a few days, and I did it because my wife was advocating. She said she knew it was something I didn’t want to think about right then, but she really thought we should do it. And we did.

My son is technically 3.5 years old! The really cool thing about the IVF process is when they create the embryos, we have multiple viable embryos. We still have a couple that down the road, if we decide to make another addition to the family, we have that option.

»MORE: Read a patient’s detailed IVF journal

What does survivorship mean to you?

Survivorship to me is not letting cancer win. What I mean is not necessarily winning in terms of where it is in my body or if it’s growing. I mean winning by taking away the joy I want to live my life with.

Every second that I spend thinking about, ‘What if? How will this affect me? What if this gets worse?’ is the second I’m letting cancer win.

By focusing on all the things I want to do in life and how I want to live, being a happy, loving father and husband, being a joy in life, that’s winning. That’s survivorship to me. 

If I’m having a bad day or feeling down, I get out of the house and do something. I hit the reset button. It’s okay to cry. I tell people that all the time.

It’s okay to feel bad and cry, but you have to get out of it. Flip the switch at some point to stop feeling sorry for yourself, and turn adversity into an opportunity.

I try to turn adversity into an opportunity to be a light, share my story, to advocate for cancer and lung cancer specifically, and live life for the fullest.

Last message to patients

My last message would be that for me, personally, my cancer diagnosis in a weird, obscure way was a gift. I wouldn’t give it to anyone and wouldn’t wish it upon anyone else, but the only reason I would call it a gift for me is because it has helped me recognize and appreciate life much more so now than I ever did before I was diagnosed.

For that, I am so grateful because I try to live every day as best as I can. My diagnosis brought that out in me. For newly diagnosed or people who’ve never been diagnosed, don’t wait for something like that to happen to you, to live that way, to live the way you want to live.

I tell my school kids every day a saying we put on the wall. It’s corny and cliché, but it’s so important to me. It’s 3 letters: A, I, E.. It stands for “Attitude is everything.”

To me, attitude is the most important thing in life. Like Henry Ford said, whether you think you can or whether you think you can’t, you’re probably right.

That resonates so well with me because attitude directs you in life and how you view things. It gives you perspective. It gives you the opportunity to look beyond your circumstances and to help others. 

Thanks for sharing your story, Stephen!

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Non-Small Cell Lung Cancer Stories

Yovana

Yovana P., Invasive Mucinous Adenocarcinoma (IMA) Non-Small Cell Lung Cancer, Stage 1B



Symptom: No apparent symptoms

Treatment: Lobectomy of the left lung

Dave B., Neuroendocrine Non-Small Cell Lung Cancer, Stage 1B



Symptoms: Two bouts of severe pneumonia despite full health
Treatment: Lobectomy (surgery to remove lobe of lung)

Terri C., Non-Small Cell Lung Cancer, KRAS+, Stage 3A



Symptoms: Respiratory problems
Treatment: Chemotherapy (cisplatin & pemetrexed), surgery (lobectomy), microwave ablation, SBRT radiation

Heidi N., Non-Small Cell Lung Cancer, Stage 3A



Symptoms: None; unrelated chest CT scan revealed lung mass & enlarged mediastinal lymph nodes
Treatment: Chemoradiation

Tara S., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)



Symptoms: Numbness in face, left arm and leg

Treatments: Targeted radiation, targeted therapy (alectinib)
Categories
Alimta (pemetrexed) KRAS Lobectomy Lung Cancer microwave ablation Non-Small Cell Lung Cancer Platinol (cisplatin) Stereotactic body radiotherapy (SBRT)

Terri’s Stage 3A Relapsed KRAS+ Non-Small Cell Lung Cancer Story

Terri’s Stage 3A Relapsed KRAS+ Non-Small Cell Lung Cancer Story

Terri shares her stage 3A KRAS+ lung cancer story, including experiencing 3 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 nonprofit 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.

Terri Conneran timeline
  • Name: Terri Conneran
  • Diagnosis (DX)
    • Lung Cancer
    • KRAS+
    • Stage 3A
  • Age at DX: 55 years old
  • 1st Symptoms
    • More trouble breathing
    • Fluid in lungs
  • 1st-Line Treatment
    • Chemotherapy
      • Alimta & cisplatin
    • Surgery (lobectomy)
    • Chemotherapy
  • 2nd-Line Treatment
    • Microwave ablation
  • 3rd-Line Treatment
    • 15 rounds of SBRT radiation
  • 4th-Line Treatment
    • 15 rounds of SBRT radiation
Table Of Contents
  1. Terri's Story on Video
  2. First Symptoms & Tests
  3. Lung Cancer Diagnosis
  4. Treatment Decisions
  5. Chemotherapy & Side Effects
  6. Surgery (Lobectomy)
  7. First Recurrence
  8. Second Recurrence & Radiation
  9. Third Recurrence
  10. Patient Advocacy
  11. Non-Small Cell Lung Cancer (NSCLC) Stories

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Terri’s Story on Video

How I Got Diagnosed
Chemo, Surgery, Radiation
What Patients Should Know

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 3 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 just was oppressive. We went back again to the doctor. 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. 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 1st, 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. 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 4 years down the road. Then you’re not even sure what you’re waiting for.

When you’re first diagnosed, 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 is 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, 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. 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, 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.” 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 health care 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 3 months,” but your doctor says, “You need to come back in 3 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 4 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 and the team want 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, or 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 2 in the morning when you can’t sleep.

You don’t get the questions during the day, when you can call somebody at 2 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.

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.

»MORE: Breaking the news of a diagnosis to loved ones

Any guidance on how to share the news with your children?

No, I think you have to speak to the person. How my son is going to hear it, because he’s an engineer and he thinks that way, is completely different than my daughters.

One hears it more analytically, and the other hears it much more as a personal, emotional thing.

You have to speak to the person and the age. When there were other difficult conversations through their lives, how did they respond to it? Was it better in a group? Was it better individually?

As my kids have become older, I see that it’s better if I tell them all at one time, as much as I’m afraid that they’re going to turn on me, because it’s hard. That’s mostly because I don’t want one to know before the other one does. 

»MORE: Parents describe how they handled cancer with their kids

Describe the treatment decision path

Initially, the plan was to do surgery and remove my whole left lung. It was called a pneumonectomy. In the meantime, my tumor samples were sent out for what I now know to be biomarker testing. They were looking for some genetic, genomic mutation marker to see what was going on inside of my body.

It took about 2 weeks to get the results back. It was 2 days before I was supposed to go in to have my lung removed, and the doctor reached out to me and said, “We’re not going to do that. Instead, you’re going to do chemo. We’ll see how you respond to chemo. From the chemo, we’ll probably just remove one lobe from your lung if you respond well to it.”

They show you a piece of paper, and something is circled on it. You don’t know what you’re hoping for. You’re hoping, “There’s something; there’s not something there. What does it all mean?”

In my particular case, they were talking about the PD-L1 level, which is indicative as to how you’re going to be responding to immunotherapy, which was just starting to come online at that point 4 years ago.

Based on that, they decided that I was going to do some chemo, so they calculated out the correct chemo cocktail for me. I did 3 rounds of chemo.

After the 3 rounds of chemo, I was responding well to it, and we were able to just remove one lobe of my lung. We removed the lower-left lobe of my lung.

Chemotherapy & Side Effects

Describe the preparation for chemotherapy 

I went in and had a port put in, which they put up here. They didn’t let me pick where the port went.

I had mentally and emotionally prepared to have my whole lung removed and had gone through all the testing around it. They send you through breathing tests, where they put you in this soundproof booth thing, and then they have you breathing in and out of a tube.

I was mentally and emotionally prepared for that, so when they hit me with another direction, it was all over again. I didn’t know how to react. I didn’t know what to think.

I wasn’t quite sure if this was good. Was this bad? I don’t even know what it was. It’s very stressful. For anybody to tell you it’s not stressful and, “Well, don’t worry, it is what it is.”

No, it’s stressful, and waiting is hard.

You had a lot of mental reservations before chemotherapy

My mom had breast cancer and went through radiation in the 90s. She also went through chemo. She had a mastectomy. I was scared to death.

I was afraid it was going to hurt. I was afraid of what was going to happen. I didn’t want to lose my hair.

»MORE: Patients describe dealing with hair loss during cancer treatment

My youngest was about to graduate from college. I was really scared, and I did not need to be scared. I really shouldn’t have been scared. I wish I had reached out to somebody and asked.

I wish I had the guts to ask my nurse navigator. I wish I had reached out to somebody who had been through the lung cancer community. I wish I knew where to go to get that information.

Describe the chemotherapy regimen

I had Alimta, and I had cisplatin. Cisplatin is a type of drug. It’s platinum-based, and it’s old-school as far as chemo is concerned. It’s also known to cause some hearing problems, and so prior to going in for any sort of chemo, I had to go in and have a hearing test. Cisplatin will give you tinnitus, and you can actually get pseudomonas (infection) as a result of it.

My chemo lasted around 8 hours. I had to do blood tests for a couple of days beforehand to make sure everything, my liver and all these functions, were all right, and then I got jacked up on some version of steroids.

I had to take a certain course or certain medication leading up to it, and then they clean up the port and then infuse it.

The biggest fear I had was the infusion needle was going to hurt going in. I’m here to tell you it didn’t hurt. I sat around and watched TV. It was really quite comfortable. I wasn’t even cold. I didn’t even do chemo right. I wasn’t even cold like in the movies.

Where did you get the chemo infusions?

It was a clinic just specific for chemo and infusions. They didn’t do just chemo infusions, but also blood transfusions. It wasn’t just cancer patients.

Describe the chemo side effects

I kept gaining weight. I was hot. My hair didn’t fall out. It got thinner, and I kept gaining weight. It was about 3 weeks between each cycle, and so I would go in on a Thursday. Then 3 weeks later, I’d do it again.

I didn’t feel lousy at first. Day 3 or day 4 is when I really felt miserable. From the movies, I was completely convinced I was going to be throwing up. I wasn’t throwing up.

I didn’t feel on top of my game, I’m not going to lie. It really wasn’t like in the movies, and it wasn’t like it hurt going in. I was really, really afraid it was going to.

When you feel lousy like that, and then every time you go, going and doing it again, it gets a little hard. You know what to expect; you know what’s going to happen. You come home, and you think you’re fresh.

This picture was after chemo cycle number 2. Do I even look sick? This is not my Julia Roberts moment from the movies, where she’s throwing up over the toilet.

This is a couple of hours after the second chemo I had. My daughter had just gotten a puppy and brought it over for us to take a look at. I was all jacked up on steroids, and so I didn’t feel that horrible.

What helped with the side effects?

The funny thing is that all those things that your mama always told you to do like try and sleep well, drink lots of water, and exercise — those things are really important to try and do during chemotherapy.

Even though you may not be running a marathon, you can drink water and stay hydrated. You can try and move around a little bit, because it does help your body to feel better.

How did you respond to the chemotherapy?

I responded very well to the chemo. Their idea of very well doesn’t mean that I felt like running a marathon, but it does mean that it was going to kill the cancer. That was good, but the cancer wasn’t completely gone. 

Surgery (Lobectomy)

What was the plan with surgery?

We found that I was responsive after doing a scan. Based on that, we went in and just did just the lobectomy. My youngest one graduated from college, so we delayed things a little bit so that I could attend her graduation.

I had the surgery done in May of 2017. I was in the hospital for around 10 days.

What was the staging?

Initially, when I had that fluid in the lungs, the doctors were very concerned that it might be stage 4. They were presuming that it was going to be stage 4 until all the tests came back with the biomarker and reading the fluid.

The results came back, and it wasn’t metastatic. That’s when they determined that it was stage 3. 

What are the questions you think are important that you wish you would have asked at the time?

I wish I had actually asked for the full biomarker testing to see what their report was and ask questions about it. Cancer runs in my family, but I had done genetic testing. I didn’t understand this was different testing.

This is testing that is based on the genomics, the mutations within the actual pathology of your cancer. It’s not necessarily germline what you get from your parents, from your DNA. That’s not what they’re looking for. I wish I had that.

I was very fortunate. I ended up with a great system and a great doctor, but I do wish I had thought like a researcher, somebody who was specific to lung cancer, specific to that particular area, because there’ve been so many advances in lung cancer.

In particular, the last 5 years, it has changed so much and so dramatically that a lot of doctors are not current on the treatments at all.

I really wish I could have done that sooner. Even if we stuck with the same program of attack, I do think it would have given me more confidence that things were going to be going on better.

The first thing I wish I would have done is to not have been afraid to ask the questions.

If I didn’t understand, pursue it a little bit more. If that means getting involved with somebody, like maybe do phone buddy stuff, or with one of the big organizations, or reading and watching these shows, that’s really what it takes to get that information.

Describe the prep going into the surgery (lobectomy) and what you remember coming out of it

We hadn’t really talked too much about what we were going to do after I did the lobectomy. We met with the doctor and with my medical team. I went into it really excited because it really felt like I was doing something.

I was physically removing this cancer from my body.

It just really felt like it was the first time I had any power over it, as opposed to just picking stuff in my body unaware and afraid that it wasn’t going to work, not knowing what was going on inside of my body, except from these scans. It really gave me much more power.

As far as the prep going into the lobectomy, honestly, I kept thinking it’s the waiting that’s just brutal. You get yourself so jacked up in your head, like, “What’s going to happen? What might really fix this? What about this? What about that? Do I have my will done? Do I need my will done?”

These are all really important issues. These are probably things that we should have taken care of way before I got sick. This is just something we should normally take care of as an adult, but you don’t really think about until you get a really serious diagnosis.

Any guidance for others on recovery from surgery?

They have different approaches to how you handle a lobectomy now. Now it’s getting a little bit more common to be able to do what they call wedge resection, or just go in and just take out a piece of it or a portion of it.

In my particular case, they had to go in and cut me in a V across my shoulder blade. They could go in, and I could get victory over that cancer. They went in, they cut that out, and then they took out the cancer.

I was in the hospital for around 10 days. I woke up, and I wasn’t mentally prepared for the juice coming out of me. They didn’t really hurt, but I was surprised. It just didn’t cross my mind to ask the question, “What am I going to wake up with?” I just didn’t know. I knew I’d be in the hospital for around a week.

What was the recovery like?

Lying in a hospital, eating their food, watching their television. The only time that they have anything for you is in the middle of the night when you’re trying to get some sleep. Every other hospital is just like that.

How long was recovery at home?

All the wonderful people that I have in my life — my Bible study ladies, my friends, my family, the neighbors, and people in my house that I work with — also were very helpful.

The insurance company was reaching out to me, and somehow it really became overwhelming. It felt like I needed a secretary to take care of all of it.

It reached a point where I had to say, “Thank you,” and then just not respond so then I could recover. Otherwise, it felt like I just kept saying the same thing over and over and over again.

That is something to be warned about. As much as they love you, take your space so that you can recover. I was just lying on the couch, or I was lying in bed. I was at home, and I was recovering and watching TV. Zoning in and zoning out is what you do when you’re not feeling that great.

You feel bad. As far as things I had to do, I had this little breathing apparatus, a spirometer or something. You had to blow this little ball in there, fill up your lungs.

At first, it was uncomfortable, but the more that I did it, it felt like I needed it. It felt like a good burn, a good exercise, like when you get the good stretch. It really felt like it was starting to really stretch well. That was helpful.

I just wanted to start moving around. It wasn’t exercising. This was just moving. Some days it was a big, exciting day because I took a shower.

You’re not feeling fabulous, but at the same time, you need to be able to move around. Just do a little bit at a time, and do a little bit more than the next day. If you’re not feeling so great, bring it down a notch.

You did chemo after the lobectomy

I was more worn down from the lobectomy, and then I did the chemo. That was a little bit harder than it had been previously. I did a scan following that, and the results came out well.

I had done so well that they decided that we could take the port out. I could physically go in and actually did it over the 4th of July weekend because I felt it was literally independence.

When they said I could get it out, I was like, “Let’s just do this now.” I didn’t want them to change their mind. Let’s get the port out and just make this go away.

Describe the follow-up after hearing you had no evidence of disease

I’m getting scanned every 3 months and talking to my doctor regularly. When you’re going through it initially, it seems you’re at the doctor’s 3 or 4 times a week.

Sometimes you’re getting 2 doctors in one day just because of the schedule and getting a hearing test every time before you get the chemo and all this stuff.

When you get back to the point where it’s like, “Okay, we’ll see you in three months.” It’s like, “Well, wait a minute, I’ve been here all this time. What am I going to do with my schedule now?”

It felt strange transitioning to fewer doctor’s appointments

It was a little sense of abandonment, because it’s like, “What do you mean?” They’re like, “Yes, okay, we’ll see you in 3 months.”

That’s the time you have to start being more intentional and start taking little pieces of your life back, as far as whatever your exercise program looks like, whatever your normal life looks like.

First Recurrence

First recurrence after 18 months of no evidence of disease (NED)

We just went in for my scans like a good patient. Every 3 months, I went in for my scan, a CT scan where they do a contrast.

It’s similar to what they did for the diagnostic, where they have an IV pushed in, and you have to drink this stuff to make sure everything’s okay in your abdomen. I’m still doing it every 3 months.

From one of my regular scans, that’s when we saw that there was something. My doctor called to let me know that there was something.

Nobody wants to hear ‘recurrence.’ Nobody wants to think about it, because I wanted to be done. This was it. I was done.

I was ready to move on with my life. Every part of me wanted to just shut the door and just move forward. That’s not what was in the plan, I guess. 

How did you process the first recurrence?

The first recurrence, in some ways, I felt I let my family down. I felt it was really hard to tell everybody because I felt like I did something wrong. That’s one of the things that goes on behind scenes, at the time in the heart.

I want to be a good patient, and good patients do this. I’ve watched the movie. They get into remission, and so I wanted to do that. I didn’t.
How do you tell them, and how do you tell them right? Let me know when you figure it out, because it’s just hard to do. 

Describe the microwave ablation

I had never heard it before. When I have this recurrence, my doctor tells me about it. I’m like, “Okay, what’s the plan?”

Now, I’m 2 years into the journey, so I have a lot more knowledge. I’ve reached out, I’ve connected with people, and I have a little bit of a better handle on what’s going on. She was saying, “Well, I think what we may have to do is radiation.”

The radiologist took a look at it and said that they would have an interventional radiology. There’s a specialty in it, being able to do what they call an ablation.

This is my non-science explanation, but the way I understand it is they stick a little probe inside of you. I picture a really skinny little soldering iron, and they burn this out of you. They don’t burn it like thousands of degrees; it’s only 110 degrees because your body’s only 98. They burn it down, and sometimes they freeze it out.

I was quasi-awake in their cocktail-y state in the CT scan so that they could see exactly where it was. I might have to hold my breath or move this way or that way. They went in, and they were able to ablate it and burn it all out.

We blew that up and got rid of that. After, they took a couple of samples of it so they could send it away for another biomarker testing.

Dealing with changes in the cancer

That’s what’s really important. Sometimes this cancer changes. Every time we have the opportunity to go in and see what it is, we mostly likely see what it is.

Most of the time, the insurance should cover it. If they don’t cover it, you generally can reach out to one of the lung cancer organizations, and they can help you figure out a way that it can become covered.

Were there side effects from the microwave ablation?

I’ve had worse PMS cramps through the years. I was lousy for about a day or 2, but I even went to church the next day. They watched me in the hospital overnight just as a safety precaution.

Then that was it. I was fine. I continued doing the scans every 3 months. I don’t even know if it was 3 to 5 months later, but I had another recurrence.

Second Recurrence & Radiation

Describe how you processed news of a second recurrence

It becomes just such a blur because I didn’t feel like I had recovered from the last one, and it was back at it again. Honestly, for me, I just feel like I was a disappointment.

I’ve always been a good student. I’ve always been a good patient. I do what I’m supposed to do. I tried to stop doing stupid things. I was disappointed in myself again, but it’s like, “Okay, well, we’ve got what we got. We’ve got to move forward with it.”

You can’t fix it if you don’t know it’s there. First find it. Now let’s do something about it. I know what it’s like to go through the other end of it, and I know how hard it can be later on.

I’m better off staying in front of it and just moving forward with it. Based on the scans and based on the information, they determined that the best approach was to do radiation, so I did 15 rounds of radiation.

Describe the SBRT radiation

I’m still picturing what the radiation is that my mom went through. This was not my mom’s radiation from the 90s. I wasn’t all burnt up; I wasn’t all fried. This was not like that at all.

It wasn’t bad like that at all. I laid down on the radiation table and laid still, which is not something I do very well.

I had to lie down for an extended period of time. As they’re marking me, they’re taking scans of me to see exactly where it is that they need to line up their radiation equipment so that they can hit it. That took like a good hour.

It was not easy to sit still, not easy at all. Then, when I actually went in for the radiation a couple of weeks later, they go back. They do their mathematical calculations, which I guess they have a whole department of people to do.

They have a pay grade way above mine. They go in and they determine exactly what they need to do. You lie back in the same place again. It was SBRT, and it was super short.

I drove up there, I laid down on the table, I was in there for maybe 5 minutes, and then I was gone. I was out the door. As long as I wore a yoga top or sports bra and stuff, it was no big deal.

Terri suggests wearing yoga-type clothing to radiation. Avoid metal!
Any more tips on what to wear to SBRT radiation?

Honestly, stay away from anything metal. Stay away from your underwires. It’s stuff like that. If I was wearing yoga pants and a yoga top with nothing metal, nothing on it at all, most of the time — I don’t say always, but most of the time — I can keep my clothes on.  

Describe the radiation schedule

It was 3 times a week for 5 weeks, which would destroy my whole afternoon. I would come home because it is still 30, 45 minutes to get up there.

You park, you get in, you’ve got to check in, and you do your thing. The actual part of the radiation is super fast. [It’s] way longer to drive up there, park, get in, check in, all that, and then come back out and drive back home. Then you’re trying to work it so that you’re not driving in rush hour traffic and all that, and so it’s great. It’s always like that.

Most times, I didn’t have to wait very long, just a couple of minutes. I just had those yoga tops on and stuff like that. I pretty much would just go in there and just lie on the table. I’d probably be in and out in 10 minutes at the absolute. It’s really, really fast.

Were there SBRT radiation side effects?

It would feel icky as it wore on. It depends on where it is within your body to determine if you may have some bowel problems or stomach problems.

I didn’t really have any particular problems. I’d just come home some days a little bit more tired — not fatigued like it was during chemo, but worn out. You feel like you’re stuck. I just really got used to having a life, and then with recurrences, they take your life away. 

Third Recurrence

You were NED for a year before you learned about the third recurrence

I had a recurrence, and we had to go through the same sort of thing. It had been around a year, and I had to go through another 15 rounds of radiation.

Just went through that and just fit into my normal life. Other than the inconvenience of the scheduling and whatever, I knew what to expect. I knew how to negotiate it through my calendar in my life.

Guidance for people who are dealing with recurrences themselves

It’s like anything else. You do what you’ve got to do. I’ve just taken that attitude whenever I go in. That’s where this scanxiety hits.

The scanxiety is this anxiety that surrounds the scan that you’re going to go in, and you’re going to have a recurrence. I used to get my scans every 3 months, and I try to keep myself really, really busy. Really busy so that I can sleep really well.

I get a little snippier than usual, but I might indulge in a little bit more chocolate or some of the other things I normally would not be so inclined to do, because I just tend to need a little bit of extra TLC. I keep telling myself that if it’s there. It’s there. I’m just going to know it is.

That’s the whole thing about lung cancer or about any cancer. It’s growing and it’s feeding inside of you, and you don’t know it’s happening. This gives me the upper hand. I have to take it and look at it as an empowering moment and keep telling myself that. It’s hard, but you do what you have to do.

How do you manage your cancer as a chronic disease?

I will be doing it because there’s a reason that we don’t really call it remission. We don’t call it cured. We’re told no evidence of disease. Even as though we’re looking at, again, I know people that have been doing this for 15 years or more, and they’re still getting scanned.

They may not be getting scanned every 3 months. It may only be one time a year, but they’re still doing it. At one point, I’ll go from 3 months to 6 months. Then from 6 months, it’ll probably go to about 9, and then from 9 months to about a year.

I think with a cancer diagnosis, it’s like anything else that happens in your life. The diagnosis isn’t going to go away. You’re just always going to have it. You always just need to be very vigilant about taking care of it and being intentional about getting scanned.

Patient Advocacy

Describe the shift from being a patient to patient advocate

You get what you get, but you’ve got to do something with it. I’ve just always been brought up with the mindset that you need to change what you can change and accept what you can’t.

When I had the lung cancer diagnosis, I had to deal with what I had. I went through the diagnosis, I went through the treatment, and I did the things that I needed to do. You feel so vulnerable, so helpless, and really confused.

As I learned more and found and connected within the different groups, I found out that there’s more people out there who have information, and they’re willing to share it.

I wanted to be one of those people who could help out and help reach that hand out to others. As I became involved, the first thing I did was I joined a lung cancer support group in our local community. We also have national groups around the country.

They’re not selling products. It’s just patients getting together, hanging out, and talking. Talking about what it’s like to be a patient and talking about doctors and stuff. I’ve really enjoyed it.

The importance of connecting with a cancer community

I’ve really enjoyed being able to connect with the other people and sharing what they had to say. Being able to just share and process what I had been through, too.

Being able to connect out with people, we just got in a little bit more engaged. I ventured out into Lungevity and the GO2 Foundation and connected with those folks to be able to give back and do phone buddies for people who were just newly diagnosed.

The lung cancer community breaks up into different biomarker groups around whatever the type of lung cancer that you have, mainly because we have different treatments that work for different people.

What are the different lung cancer groups?

Within the particular lung cancer groups, there’s EGFR, ALK, ROS1. It’s different groups. I wanted to find my group, but I didn’t know what my biomarker was. I didn’t know what was causing it.

I kept asking my doctor. My doctor didn’t give me the information that I needed so that I could understand. Finally, when I went out for a second opinion, I said to the doctor, “What is my biomarker?”

The doctor said, “You have a KRAS, and you have a certain subtype of a KRAS.” I was shocked, but I had something and immediately went home, looking for the KRAS people to be able to connect who have this particular type of mutation.

There wasn’t any group of people that had it. There was a group of people that had it, but I didn’t have one area of connection, so I started the KRAS Kickers.

What have you learned about KRAS?

What I’ve learned is that KRAS’s mutation is the most common cause in lung cancer. It’s also the most common mutation in pancreatic and colorectal.

Within the KRAS Kickers, we do have other patients that are from colorectal and pancreatic. Because I’m from the lung community, I’m most familiar with that. The largest group of people in the group has lung cancer.

Exciting new treatment possibilities for KRAS+ lung cancer 

3 years into my diagnosis, I found out that I have KRAS, and it’s K-R-A-S. KRAS was one of the very first mutations that they found that caused cancer, and it was 40 years ago.

The researchers had been trying to find some sort of a treatment, but they were unable to find a way to be able to specifically target that mutation. They had termed it “undruggable.”

Just recently, they have found out that there’s a way that it could be drugged. We’re going to be able to take a target, and we’re going to be able to do something along the lines of possibly taking just a pill.

It’s just different subtypes within it, but it’s like any path, right? You have to make the first couple of steps before you get further down.

But after 40 years, for the first time, they’ve actually made progress. They’re going to be able to do something. I’m having a hard time sitting still.

I’m jumping out of my seat because it is so exciting. You’ve got to understand. 40 years, right? 40 years of not having anything and not being able to do anything, and now there’s a possibility of being able to do it and being able to literally kick cancer’s KRAS.

We’re the KRAS Kickers, and that’s what we do. We help connect the patients with the most current information that there is around KRAS. The KRAS Kickers are that sweet spot in the Oreo that brings those 2 areas together.

We support each other and help connect each other with the information, with the current treatment, and with the support. We’re all going through different things. It’s different for every person. If you learn my story, it’s my story. Your story will be yours.

How important are clinical trials and patients taking part?

I’m here today because of research. My mom’s not here today because there wasn’t the research that we needed today. What we’re going to be here tomorrow is a result of what it is we learn today.

I went into this space not knowing what’s involved or what’s engaged in any sort of a clinical trial or research. It’s scary and confusing.

Now that I’ve actually learned about it, I have learned that you’re really treated well, but you’re treated to either standard of care or the experimental drugs.

The experimental drugs have been experimented on the little critters in the labs for years before they get it to you, and they are confident that this is going to be okay for you.

You are saving somebody’s life tomorrow by working on it today. It really is just where the heart of it is, and that’s really what gives me hope. I know that there’s not going to be hope for anybody tomorrow unless we start doing more today.

Thank you for sharing your story, Terri!

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Non-Small Cell Lung Cancer (NSCLC) Stories

Yovana

Yovana P., Invasive Mucinous Adenocarcinoma (IMA) Non-Small Cell Lung Cancer, Stage 1B



Symptom: No apparent symptoms

Treatment: Lobectomy of the left lung

Dave B., Neuroendocrine Non-Small Cell Lung Cancer, Stage 1B



Symptoms: Two bouts of severe pneumonia despite full health
Treatment: Lobectomy (surgery to remove lobe of lung)

Terri C., Non-Small Cell Lung Cancer, KRAS+, Stage 3A



Symptoms: Respiratory problems
Treatment: Chemotherapy (cisplatin & pemetrexed), surgery (lobectomy), microwave ablation, SBRT radiation

Heidi N., Non-Small Cell Lung Cancer, Stage 3A



Symptoms: None; unrelated chest CT scan revealed lung mass & enlarged mediastinal lymph nodes
Treatment: Chemoradiation

Tara S., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)



Symptoms: Numbness in face, left arm and leg

Treatments: Targeted radiation, targeted therapy (alectinib)
Categories
Lobectomy Lung Cancer Non-Small Cell Lung Cancer

Dave’s Stage 1B Neuroendocrine Non-Small Cell Lung Cancer Story

Dave’s Stage 1B Neuroendocrine Non-Small Cell Lung Cancer Story

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.

  • Name: Dave Bjork
  • Diagnosis (DX)
    • Lung cancer
    • Non-small cell
    • Neuroendocrine tumor
    • Stage 1B (3 cm tumor)
  • Age at DX: 34
  • 1st Symptoms
    • Severe pneumonia twice despite being healthy
  • Treatment
    • Surgery (lobectomy)
Table Of Contents
  1. Video: Dave Shares How He Got Diagnosed
  2. Getting Diagnosed
  3. Treatment decisions
  4. Video: Dave Talks Surgery & Recovery
  5. Surgery (Lobectomy)
  6. Recovery from Lobectomy
  7. Support and Reflections
  8. Video: Dave Shares Tips for Other Lung Cancer Patients/Caregivers
  9. Advocacy & Guidance for Patients/Caregivers

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Video: Dave Shares How He Got Diagnosed

Introduction to Dave

A lot of what I would say defines me is from my cancer experience, but it amplified my background. I’m a Minnesota guy living in Boston for a long time. I’ve been married for 30 years and so very grateful for the wonderful life I have.

The experience of surviving a cancer scare changes you, as people know. It changes everything about how you look at life.

I live a life of gratitude, and I try to be focused on that when I bring positive vibes to everybody I encounter.

Getting Diagnosed

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. 

»MORE: Patients share how they processed a cancer diagnosis

How did you break the news to loved ones?

My wife knew, but I didn’t know how I’d share with my friends and my work. I was lining up emotionally all the things I needed to do between going and seeing the respiratory therapist and meeting with potential surgeons I’d have to work with.

Mostly, it was that the cancer was in me, and I needed it out. Now.

It wasn’t all-hands-on-deck because I didn’t have to go immediately into chemotherapy or something.

Processing that emotional part of it so you don’t scare yourself, but you have to start finding support for what you’re going through.

»MORE: Breaking the news of a diagnosis to loved ones

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.”

As a patient, you have to be your own patient advocate and in charge of your own care.

»MORE: How to be a self-advocate as a patient

Interestingly, I looked up the name of the oncologist he saw at UCSF, and it was one of the top guys in the world. It turned out he had the same type of cancer I had.

Each person is different. If you do feel the need or if you feel you’re not comfortable with what you’ve been told, you should absolutely seek out a second opinion.

Generational and cultural differences

This can be a generational issue. With my mother, she wouldn’t seek out a second opinion because she trusts her doctor, right? 

I think it’s important for someone, if you have a parent and you’re a caregiver or part of a team of caregivers — that person, like my mother, may not think to get a second opinion. 

What was your subtype of lung cancer, and when did you find out the staging?

The staging was based on the size, so it was stage 1B, a 3-centimeter tumor on my lower left lobe. From the CT scan, they could tell by the shape of it that it was localized and a neuroendocrine cancer.

During my surgery, they checked the lymph nodes. After surgery, I found out there was no spread of the disease. That’s when you get the final classification of the staging. 

Because it hadn’t metastasized, there was no immediate attention needed other than recovery from the surgery.

Was there any talk of mutations and genomic testing? 

It never came up. There’s so much more knowledge about targeted treatments now.

I can speak for people who’ve had or will get a lobectomy. It’s a very tough, invasive surgery. I was in the hospital for a week on heavy doses of medicine. I had a morphine drip, but it didn’t even help because it was so painful.

Guidance: having caregivers help with figuring out treatment decisions and medical team

You can help navigate the system, or someone else can help on your behalf if you’re not that type of person. Someone who’s one of your caregivers can help you navigate through the treatment decisions.

It’s up to the comfort level of the patient. Everybody’s different. I’m married to a nurse, and her father was a pharmacist, so we were very engaged in the process.

Dave’s wife is a nurse (far left)

For other people, they’re caught by surprise and don’t know what to do next, have no experience in health care, and don’t know who to turn to.

Whether it’s your family or close friend, I do believe it’s very important to have someone help you navigate it. 

Even if you’re good at it, it’s good to have someone else help you navigate it. That’s where it’s great to find other patients who have been through the similar experience. It’s not always easy, like if you have a rare disease, but in general, it is easier to find people now.

Tip: have others at your doctor’s appointment

Once you hear the word “cancer,” you may not hear the next words that come out. If somebody is sitting next to you, it might be good to have them to take down information about it because it can be very overwhelming.

Editor’s Note: You can also record your doctor’s appointment for reference later.

Video: Dave Talks Surgery & Recovery

Surgery (Lobectomy)

What kind of doctors did you have, and how did they explain the surgery?

This is a fun part of my story, very positive part of it, because my primary care physician really knew me well.

He knew I was Minnesota Nice and always engaged with my medical team, so he knew picking the right surgeon would be really important to me.

At a place like Massachusetts General Hospital, there might be 7 thoracic surgeons who do the type of surgery I needed. The first step was my doctor sent me to meet with some respiratory physicians. He handpicked because he knew I would really like them, and they explained what the process would be like.

Then my primary care picked my surgeon, Dr. Doug Mathisen, who was the chief of thoracic surgery at Massachusetts General Hospital. 

There were 2 reasons my doctor chose this surgeon. First, he was the chief of the department, which meant he was “the man,” though they were all good. The second thing was he played college basketball at the University of Illinois. He was a Midwestern guy and was very outgoing and nice.

My doctor even told me that  I would love him. I got to meet with Dr. Mathisen, and he was so amazing. He sat me down. He had a whiteboard, drew the lungs, and showed me where the cuts would be. He explained the process.

The one thing he didn’t prepare me for — and maybe in some ways it was good I didn’t know — was anesthesia. I’d never had it before because I never had major surgery, so I didn’t know what that was going to be like. 

Describe the day of surgery

Day of the surgery, I was nervous, but I wasn’t as nervous as I would be future times when I had to go back under anesthesia for bronchoscopies, when I’d be a nervous wreck.

It was difficult to prepare for how I would feel coming out of anesthesia after a 4.5-hour surgery. I was in so much pain and so disoriented. It was awful.

What was the prep before surgery?

It was an early-morning surgery. I had to be there at 6 a.m. I had to fast the night before but can’t remember the number of hours. I was told I couldn’t eat after a certain time. Then I showed up, and I was the first surgery of the day, so that was cool.

Now I’m remembering the night before, and I was super stressed. My parents and my brother had come into Boston to visit me. They were like, “Hey, it’s going to be great!” I was like, “No, it’s not.”

I remember thinking if someone says to you that you’ll be fine, you’ll do great, it’ll be nothing, or you’ve got this, it’s like, “Yeah, really? It’s me it’s happening to.” It was kind of hard to sleep the night before.

Sitting in the waiting room when you show up to the hospital and you go into the surgical unit is when it becomes real. Things just got real.

Then you go in and sit down with the anesthesiologist, get changed into your gown, and that starts the communication about the process of anesthesia. By the way, that was another person chosen by my primary care doctor, so that was good.

What do you remember about waking up from surgery?

I remember exactly that moment. I woke up with my lips really chapped. I was sitting, looking up, in a recovery room, and everything was very loud.

The voices were probably amplified. Even if people were just speaking in a normal voice, it was so loud. I remember being disoriented. I looked up and asked if anyone was there, asking for help. The noises were further confusing me. 

The chapped lips happened because the breathing tube was in the mouth the whole time. Then I remember the process of going and settling into my hospital room, trying to find a comfortable position.

You have a chest tube coming out, which I call a garden hose, a big tube to help drain the liquid out of your chest. It’s super painful. You have to sit at an angle in the bed to have the tube. You can’t sit on your back, on your stomach, and you can’t really be on your side. You have to prop yourself up with a pillow.

Then they have the morphine drip. If you don’t know what that is, it’s a way where you can self-administer the medicine by pressing the button, but it’s on a timer. You can only get it after, say, 7 minutes, so you can’t just constantly get the medicine.

I remember hitting it all the time because I couldn’t wait for the next minute. It also made me sleepy and feel out of it, so I wasn’t really seeing or feeling things happening around me. It dulls the pain but doesn’t take the pain away.

»MORE: Read more patient experiences with surgery

Recovery from Lobectomy

Describe recovery in the hospital

The first day after surgery, you have to get up. You can’t just sit there. The nurses want to get you moving, which is a big part of the recovery. They come in every day with a portable X-ray machine and get you out of bed.

I remember the first time I stood up, I took 1 or 2 steps, and that was it because it was so painful. I got back into bed.

The second day, I tried to make it to the edge of the room by the door. I remember thinking that I wanted to get around the unit by the end of the week. I was walking with my bags around the floor. I recall thinking I just had to get through it.

The nurses were amazing. They wake you up in the middle of the night to do physical therapy and hit your back, all around 3 in the morning. They let my wife sleep in the room, so she was in a chair next to me. 

I remember one of the nurses on duty that week on the night shift being so brilliant. I wish I was more proactive in remembering her name to be able to thank her!

What helped you through the week in the hospital recovering from major surgery?

Understanding ahead of time and getting myself in a mindset of how invasive this surgery was.

People might think of a lung surgery being less significant because now they have these laser surgeries, but they still do lobectomies.

They make a big incision in your side and basically break your ribs, like open heart surgery. If you’ve ever had a broken rib, you understand how painful that is.

The recovery after the hospital was where I can share with people what to do. You’re going to be told what to do recovering in the hospital. You have to get up at specific times, you have to walk, and they’re going to give you the pain medication.

Describe the surgery recovery at home

I remember getting home and walking upstairs to the bedroom was excruciating. I could barely walk. It was like I was a 90-year-old person walking up the stairs.

I remember lying in the bed, and every time my wife would just sit on the bed, it would hurt so badly. That part of the journey is really about taking that mindset of, “You got through the hospital. Now you’re home.” You’re probably not going to remember a lot of the time spent at the hospital because of the medicine.

Get yourself into the mindset where you have to get through the next period. 

I can’t get through Saturday until I get through Friday, and I can’t get to Friday until I get through Tuesday. I broke it down into these little windows of time, like I can’t get to 5 until I get through 3. 

I even broke it into 5-minute segments. I compartmentalized it so that I couldn’t think of a month or a week from now. I’m in so much pain. I just have to get through the next 10 minutes or until I get my next Vicodin, because it’ll be wearing off in 4 hours, and I have to take another one.

This is not a woe-is-me thing, by the way. I’m so grateful for the experience that I had and that I didn’t have to make decisions on targeted therapies or immunotherapy, what stage is the cancer, or whom should I talk to? There are so many people who describe these situations in my advocacy work. 

I don’t mean to make this sound like I’m complaining about it, because I’m definitely not. I’m just trying to share what to expect during the recovery. Once you’re done, there’s no doubt that the feeling of gratitude in comparing my experience to others who have it a lot worse than me. 

At that time, the life expectancy of someone with lung cancer was really bad. It’s improved. It’s still not good, but way better than it was back then.

What else helped with recovery at home?

I was lucky because I had a caregiver, my wife, who made everything easy. With my work, I was able to have people cover for me. I did start to get back to doing some things work-wise after some weeks. 

I remember setting goals of going downstairs because it took me a while to get down the stairs. Believe it or not, even that was hard.

I remember when I finally got outside, it was awesome because it was spring, and my neighbors saw me walking down the street. They were like, “Dave, how are you doing?” I had literally not been out of the house for a long time.

Everybody copes differently with getting through it, but I believe in a positive attitude. I believe that helps in the recovery in whatever treatment you’re getting. 

Support and Reflections

The importance of taking care of the caregiver

A big thing for me is I could have done a better job of appreciating my caregiver. That’s one piece of advice I like to give to people: to make sure that you take care of the caregiver. 

The patient is locked in many times in the treatment and just trying to get themselves emotionally ready. My experience was my wife as a caregiver did everything.

We had 3 little kids. She was feeding them, getting them to school, doing the single-parent work that was just thrust upon her, and worrying about me, as I would if she was in that situation.

Emotionally, it’s so hard. She was sitting in the patient lounge during my surgery. Thankfully, she had a friend go with her to visit because she was an emotional wreck.

It’s important to recognize the emotional experience of the caregiver. It’s not as simple as, ‘We can have people help make us dinners.’ It’s a whole package and emotional experience someone goes through. 

I just told someone the other day about this. If it had been reversed and I had been the caregiver, my wife was in that hospital, I know she would have been emotionally devastated because of not being able to take care of the kids. 

Thinking of what it would have been like for me being the person taking care of everything while she was down and out, that’s the best advice I can give. Patients, we can do this. We can be sensitive to that.

Parenting with cancer

I don’t think my kids were old enough to understand what was happening or how serious it was. My kids are older now.

I think if that had happened now, every family would really have to think about how to have that conversation with your kids.

Friends of mine with stage 4 metastatic lung cancer have a really hard job to do: talk to kids and get their arms around that. They know their parents are likely to not live a long time. Some are living a lot longer now.

Any guidance on asking for help?

I believe in asking for help.

As a caregiver, I do remember some friends of mine who stepped up, not even being asked to step up. They were amazing. I’m very grateful for that.

It’s okay to ask for help. You probably get friends who will ask what they can do or let them know if you need anything. This isn’t just in cancer, but if somebody says, “Let me know what I can do to help,” how many times do we not ask them for anything? 

If you’re a caregiver and you have a loved one who’s in the hospital or is undergoing chemotherapy or serious treatments on a regular basis or clinical trial, and you’re emotionally out there, it’s okay to accept help from your friends. 

Video: Dave Shares Tips for Other Lung Cancer Patients/Caregivers

Advocacy & Guidance for Patients/Caregivers

How did you shift from patient to advocate?

In my case, it was actually transformative to me because my background was finance and sales and marketing. I had been working at the Bank of Ireland.

After I recovered, everything changed. My life changed. I needed to do something I was passionate about.

I started working in medical marketing at a publishing company to provide patient education materials to cancer patients.

Going back to being treated at Mass General Hospital and being from a place in Minnesota where some family lives in rural areas, I felt every person should have access to the same level of care. 

I literally felt I wanted to change my career path because I was so profoundly impacted by the cancer experience that I started to become more active.

I wasn’t super active right at the beginning about sharing my story, which is an interesting part of my journey. For many years, I didn’t want to be wearing it on my sleeve.

I felt almost guilty that I had such a positive outcome and many people didn’t have positive outcomes, even people in my first hospital room. I was hearing the conversation in the bed next time, and it was bad.

It really shifted my thinking that I wanted to be in health care and be involved in patient advocacy.

I ended up working at the National Foundation for Cancer Research, which was where I really decided to get more active in the community. I started writing a blog and started being active on Twitter.

I started meeting people (like you see in this photo), fellow advocates of mine, but it really was because of the experience and because emotionally I wanted to make a difference. I felt like if I could make a difference and make a living doing it, that’s what I would do. 

I couldn’t go back to just doing work that didn’t seem important to me anymore, to be selling investment service products to small businesses, which is what I was doing.

What does advocacy work mean?

This photo is a good example. The way I look at advocacy is many of us within the community feel that everyone has their lane.

Every advocate has what they think is their calling, their purpose, their mission. It’s going to be different for every person. 

For some people, advocacy might be raising awareness that anybody can get lung cancer. It’s not just a smoker’s disease.

Others might be advocating for themselves because of a clinical trial and want to make sure they have access to trials. Janet Freeman-Daley is a scientist, so her lane is to make sure she can educate people on the latest scientific findings.

We’re all in this together. We need to shout from the mountaintops about lung cancer and the good things that are happening.

Patient advocate is a broad category that gets a lot of attention now because it could be advocating for access to clinical trials, diversity in clinical trials, or gender equity in cancer treatment.

There are so many different ways to think about advocacy, with the goal of making sure patients get good care and good outcomes. 

How should patients and caregivers think about new therapies and treatments?

We talk about targeted treatments as an example. You have your diagnosis and your staging. You have this conversation with your physician on what type of cancer you have. 

Is it non-small cell or small cell? Within that, the focus of my advocacy work is that I believe every patient should have access to genomic testing because now there are tests.

For instance, there are 7 biomarkers in non-small cell lung cancer, meaning there’s a mutation identified through a genomic test. There’s EGFR, ROS1, KRAS, etc. There are targeted treatments available for those. That means taking a pill, not taking chemotherapy.

Even before that, you think about how you get the information to know and ask these kinds of questions about treatment options and clinical trials.

First, you have to be your own advocate. If you’re not your own advocate, it could be a spouse or friend. You have self-advocacy where you find the information.

»MORE: How to be a self-advocate as a patient

Luckily, there’s a lot of information out there. You have your care team. You get information from them, and hopefully they’ll help you with options. Don’t go to clinicaltrials.gov and try to figure it out yourself.

What you can do is once you have your diagnosis and understanding, first ask for a genomic test, or someone will recommend you have one. Find out if there’s a mutation that has a treatment.

With those 7 biomarkers now in targeted therapies, that’s a game changer.

That’s why everyone should have access to it. If you’re a patient and you don’t have access, that’s not fair.

Finding your cancer community online (#LCSM)

There are people in the lung cancer community, particularly online, where you can connect with people who have the same diagnosis as you do. 

On Twitter, for example, many of us in the community use the hashtag LCSM. That stands for “lung cancer social media.” That’s how I’ve met tons of people who are patient advocates and patients, as well as clinicians and researchers.

Within LCSM, there are also groups forming around different mutations. There’s the EGFR Resisters, the KRAS Kickers, or ROS1ders (“ROS-one-ders”).

You can find people who have the same diagnosis that you do. That’s where you can get a tremendous amount of information, whether it’s about clinical trials, treatment options, or where should I go for treatment?

That support network is so important, so I really encourage people to think about that when you’re doing searches for your particular situation online. Consider tapping into those resources, and reach out to those people. They will respond.

Stigma of lung cancer and smoking

Within the lung cancer community, the stigma is something that bothers all of us to a certain degree, some more than others. That’s not to say that people who smoke deserve cancer. I’m always sensitive to that as well. 

It’s estimated now that 20% of people who get lung cancer are non-smokers, never-smokers, or people who smoked a long time ago and didn’t smoke a lot. If 20% of the patients getting diagnosed with lung cancer are non-smokers, it doesn’t seem right that somebody should ask if you smoked. That’s what happens. It happened to me; it happens to everyone.

People ask if you smoked, and it’s like smoking is implicated in a lot of cancers. When someone gets breast cancer, you don’t ask if they smoked. That could have been one of the factors. When you’re talking about the stigma, it’s the years of those campaigns of anti-smoking. The message was, “How do you not get lung cancer? Just don’t smoke, and you won’t get lung cancer.”

That’s not true. If you have lungs, you can get lung cancer.

People who are advocating in the lung community and very active are talking about how anybody can get lung cancer. 

I’ve read that of the non-smokers who are getting diagnosed with lung cancer, a lot of them are much younger, and two-thirds of them are women. There are issues around that as well. How can we grow awareness of that?

The stigma may hurt research, awareness, and funding

That’s what the stigma is. Some people talk about the inequity in research funding, thinking that maybe lung cancer research doesn’t get as much attention because it’s a “smoker’s disease.”  

Here are numbers that may put this into perspective. If 200,000 people get diagnosed with lung cancer every year in the U.S. and 150,000 people die of lung cancer, if 20% of that 150,000 is 30,000 people, that’s a big number. Even if it’s “only 20%,” it’s 20% of a big number. 

It ranks up there as a very prominent people in that category of non-smokers. 

The White Ribbon Project

This just happened a few months ago in October. We were just talking about the stigma of lung cancer and people who are not smokers. There was a couple in Colorado, Pierre and Heidi Onda. She has stage 3 lung cancer. 

People didn’t know she had lung cancer, and they asked if she smoked. She wanted to change the perception. She was frustrated and wanted to do something to let people know she had lung cancer.

Her husband is a primary care doctor and a craftsman who has a workshop in his basement. She said she wished she could just put a ribbon on the front door. He said he could make a ribbon, a white ribbon, which is representative of Lung Cancer Awareness Month.

She wanted to do this year round, not just focused on the actual month. He crafted it out of plywood and painted it by hand. People, including me, caught wind of this.

People began asking if they could make them one. It started popping up, and it reminded me of the Humans of New York project, where it was the faces of lung cancer. 

This is the modern face of lung cancer. We started taking photos at the places where we got treated, at cancer centers with other friends and families, at biotech and pharmaceutical companies. 

We wanted to try and be active on social media and send the message that anyone with lung can get lung cancer. Let’s change the public perception of lung cancer as a disease.

It’s a grassroots effort. We’re just going to be out there. So far, Pierre and Heidi have made almost 400 ribbons by hand. It’s a wooden ribbon, quarter-inch plywood, and made with care. That’s the story. 

People from coast to coast and in Canada are asking for these ribbons. Oncologists are contacting us to get one and put on display and having this conversation about lung cancer.

We think these conversations will lead to more potential research funding because of the fact that we’re telling the story.

This is all unbranded. That means it’s not attached to any one nonprofit organization. It’s just us advocates out there who care. It’s not just patients, by the way. It could be someone who lost a cousin to lung cancer or knows a colleague with lung cancer.

Similar to the HIV campaigns years ago or the breast cancer campaigns that become true grassroots movements. That’s what we’re doing in lung cancer right now.

There’s been progress in lung cancer research

From when I got treated until now, there’s a lot more hope. It’s a scary diagnosis, particularly if you’re diagnosed stage 3 and, of course, stage 4. I know people who are living 10 years beyond a stage 4 metastatic lung cancer diagnosis.

There’s a lot of hope and optimism out there.

Emotionally, that’s something to be thinking about. Also, the journey of finding support, finding a team you’re comfortable with, finding other people who have had a similar experience — to me, those are the most important things you can do to get through the initial shock of getting lung cancer.

Tell us how people can find you now

The podcast is called “The Research Evangelist.” You can find it wherever you find your podcasts on Apple or Spotify. The background of the podcast was that I wanted to become more vocal. 

I’ve been writing a blog for many years, but I wanted to use my spoken voice. I decided to interview people in life sciences who are brilliant but not famous. That’s the message. 

I’m meeting a lot of people in research, whether researchers or oncologists or both. They’re doing clinical trials. People who are just doing amazing work. 

There will be a lot of focus on lung cancer and precision medicine in cancer, what is genomic testing in lung cancer, and highlighting people whose stories I want to tell so they can connect to patients. They might be at Massachusetts General Hospital, University of Wisconsin, UCLA, UCSF, or at a community setting. 

It’s a positive message in the name, because the Greek meaning of the word evangelist is “bringing the good news,” and I’m a very optimistic person. My goal and mission is to introduce these fascinating people who are doing good work.

When I say brilliant but not famous, some of them are famous in their world, like Narjust Duma out of the University of Wisconsin. The lung cancer community knows her, but if I went to my next door neighbor and said, “Hey, have you ever heard of her?” They’d be like, “No!”

Maybe you can support their lab or their work. Contact her and find out what she thinks of the latest treatments. These people are receptive and brilliant, many of them. Many people don’t think you could contact a lung cancer researcher and actually have a conversation with them, but you actually can!

Thank you for sharing your story and for your advocacy, Dave!
Click here for “The Research Evangelist” podcast.

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