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Patient StoriesLung CancerPatient Advocacy

Becoming a Patient Advocate After a Small-Cell Lung Cancer Diagnosis at Age 28

Montessa Lee’s pain persisted after an initial visit to the doctor and a misdiagnosis. Finally, an x-ray in the emergency room revealed a 15-cm mass on her left lung. Read how she turned anger into action.
November 2021 – Lung Cancer
Montessa Lee
Hyattsville, Maryland

The first time I went to the doctor with a cough, chest pain, and shortness of breath, I was diagnosed with costochondritis (inflammation around the rib cage) and was sent home with ibuprofen, for pain. It seemed a reasonable diagnosis, because I had recently started exercising more.

Not the Case

However, the pain persisted, and I found myself at the doctor’s office again, with the same symptoms. This time I was diagnosed with bronchitis, and again, the diagnosis made sense to me. I worked in a school and figured that I picked up an infection from the kids there.

Taking antibiotics and using an inhaler became commonplace for me over the next few weeks, but eventually it dawned on me that my cough should have resolved at some point and the pain in my chest should have been gone, or at least diminished, but this was not the case.

That realization, however, did not happen until the pain was so bad that I wound up in the emergency room. Finally, I had a chest x-ray for the first time. The x-ray revealed a 15-cm mass covering about three-quarters of my left lung.

Questions on Back Burner

I didn’t realize that an x-ray is often done to rule out other potential causes in people diagnosed with bronchitis.

I asked myself why my doctors had not ordered an x-ray when I first complained about my symptoms. Do you always need to trust the doctor’s first diagnosis? Had I been too trusting?

I had to put those questions on the back burner for a time, but only because all my thoughts went into a survival mode.

After finding the mass on my lung, I was hospitalized immediately. I had a needle biopsy, and then an open chest biopsy. Even before the results came back, the doctors’ consensus was that this was going to be something rare.

I’m Not a Smoker

I was diagnosed with small-cell lung cancer at age 28, in 2006. A lung cancer diagnosis at such a young age is rare, and small-cell lung cancer often occurs in smokers, and I am not a smoker. My oncologist later told me that lung cancer would not have been his first, second, or third guess, or anywhere on his radar for a 28-year-old nonsmoker and otherwise healthy person.

My treatment plan included chest radiation and chemotherapy simultaneously, at 2 different hospitals, because the tumor was inoperable. I had to rely on my family and church a lot in the beginning.

Somebody would pick me up from my house and take me to the hospital where I would get the radiation treatment. Then someone else would come pick me up from the hospital where I had the radiation treatment, take me to the chemotherapy site, and then yet another person would pick me up from the chemotherapy site and take me home.

React and Survive

Looking back at those first few days, I often wonder what it would have been like to get the cancer diagnosis at my own doctor’s office rather than in the hospital, to have had the time to go home and process the news with my family and friends in person rather than making calls to tell them the news from a hospital bed. And possibly to get second opinions and treatment options rather than to react immediately.

But that is what I had to do. There was very little time to think or process my situation; I had to react and survive. It’s a heavy toll to be in that survival mode. It means that sometimes you are living, but it doesn’t mean you have a full life.

At age 28, life as I knew it stopped. I was at work one day, and in the hospital the next. I didn’t know when I would be back, or if I would ever be back.

What do you do when you’re used to being so busy, and then suddenly you can’t go anywhere or do much of anything?

I started by spending time reading, mostly about lung cancer and small-cell lung cancer. In 2006, I realized that there had not been much progress in the survival rates for patients with lung cancer, especially small-cell lung cancer.

Lung cancer kills more people than breast, prostate, and colon cancer combined in the United States, but many people don’t know that. I also realized that there is not enough funding for lung cancer research.

Turning Anger into Advocacy

The more I read, the angrier I got, but I let that anger turn into advocacy. Finding a new mission, a new purpose, was part of survival for me.

I first signed up for advocacy organizations in late 2006 or early 2007 just to get information about lung cancer, but later I signed up to be actively involved. I connected with the Lung Cancer Foundation of America, and my work at the foundation opened the doors for me to partner with organizations to advocate for lung cancer.

I had my first grassroots advocacy training with the National Lung Cancer Partnership, later known as Free to Breathe, which was then changed to the Lung Cancer Research Foundation, and I never looked back.

It has been nearly 15 years now, and although my advocacy focus has shifted over time, I always felt that there was not enough being done for patients with small-cell lung cancer. We’re not the “Cinderella story” of lung cancer like those with non–small-cell lung cancer (NSCLC), which is the common type of lung cancer (about 85% of lung cancer cases are NSCLC). But we are also here, and we shouldn’t be forgotten.

Nothing Small About It

My advocacy work has recently allowed me to lend my voice specifically to small-cell lung cancer. In early 2021, I had the opportunity to sit on an advisory panel for the development of the website called Nothing Small About It (www.nothingsmallaboutit.com), which fills the gap for patients with small-cell lung cancer. This online program is focused entirely on helping patients with small-cell lung cancer, providing emotional support and education.

The website acts like a hub, and patients and caregivers can get all the information they need in one place, including educational material for each stage of small-cell lung cancer and stories from patients and survivors.

It is very important for survivors to get connected to someone who has the same diagnosis and similar experiences. Sometimes it can be hard to talk to family members who have never had cancer themselves.

Nothing Small About It provides a real support network for our community.

I think back to when I was first in the hospital with a new diagnosis, and all the unanswered questions I had. Should I get a second opinion? What’s treatment going to do to my body? What is my future going to look like?

I’m hopeful that with the creation of this new program, newly diagnosed patients will not have to go into survival mode instantly like I did, but they could find the resources they need to feel comfortable to take the time making decisions and navigating their cancer diagnosis.

Key Points

  • An x-ray should be used to rule out potential causes in people who are diagnosed with bronchitis
  • Although small-cell lung cancer often occurs in smokers and is rare in young patients, it can occur in nonsmokers and in young people, as seen in this patient
  • About 85% of lung cancer cases are NSCLC, but the 15% of patients with small-cell lung cancer are also here, and they shouldn’t be forgotten
  • Nothing Small About It is an online program that is focused entirely on patients with small-cell lung cancer, providing emotional support and education to fill the gap for these patients

Patient Resources

Lung Cancer Foundation of America
https://lcfamerica.org

Lung Cancer Research Foundation
www.lungcancerresearchfoundation.org

Nothing Small About It
www.nothingsmallaboutit.com

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Last modified: December 3, 2021

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