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Patient Turned Advocate Raises Awareness for the Lung Cancer Community

Patient advocate and lung cancer survivor Nancy Cohen discusses living with stage 4 lung cancer.
BY Conor Killmurray
PUBLISHED November 30, 2019
Living with lung cancer is an everyday battle that often doesn’t receive the same awareness and understanding as living with other cancers, which is why lung cancer survivor Nancy Cohen became a patient advocate. Cohen hopes to raise awareness through her story and help other patients in need of support. 

Cohen served as keynote speaker during the CURE® Patient-Focused Sessions at the New York Lung Cancers Symposium® on Nov. 9, addressing a crowd of more than 80 patients with lung cancer, to help show that they can continue to live life as they wish and gather support from within the patient community.

In an interview with CURE®, Cohen discussed the journey to becoming a patient advocate and how being involved with support groups gives her strength.

CURE®: Can you tell us about your cancer journey?
Cohen: My diagnosis was actually a little bit unusual in the sense that the story that many people tell is of a persistent cough or exhaustion or something, and sort of going doctor to doctor and taking a long time to find an answer. Mine was very fast. I felt a pain under my arm for a couple of days, a sharp pain. (I) took some Advil because I didn't know what else to do. Woke up on a Wednesday morning and it hurt to take a breath, which I knew was not a great sign and texted a close friend who's a pulmonologist. His response was, “Nancy, you never complain. I'm sending you for a chest X-ray.” And from that point, it was literally 48 hours from that text. I had a needle biopsy Thursday morning and results Friday.


I think it was the fact that the pulmonologist is a good friend of mine. I'm pretty sure that he called in every favor he's ever been owed by anyone in any lab to get everything happening that quickly. I think that was sort of why it happened so fast. And then obviously meeting with doctors and PET scans and brain scans and all of those attendant tests. That led to the discovery of the EGFR mutation that I had, and to the staging of the disease, and like so many others, it was not caught early, because there's no screening and I had zero risk factors for the disease. There would have been no reason currently to get screened, although I wish there had been. The disease had already spread to my brain and lymph nodes.

How did you cope with the “new normal” of having cancer?
It took probably a good month or so to settle on a first-line treatment by the time we had all of these tests and everything else, so that month was definitely hectic. And then I was lucky — lucky seems like a strange word to use — but because I have this mutation, I was able to start on a targeted gene therapy on osimertinib (Tagrisso). It's an oral pill that I take every day and the side effects were really manageable. I would say (finding a new normal) was a gradual process for me and my family.

Did you lean on support groups or professionals to help you after diagnosis?
Right from the beginning, I had a friend who had been diagnosed with lung cancer about two years before I had, and she was the one who made sure that I was getting the blood test that led to finding the genetic mutation. My doctor was already planning to do it, but she gave me the questions to ask to make sure that I was getting that. Because unfortunately, in many parts of our country, where you're diagnosed makes a big difference. This genetic profiling is not happening everywhere, and it is so crucial to get the right therapy for the specific mutation of the lung cancer.

When I started the TKI, I experienced side effects that I could go search in this Facebook group and see that I wasn't alone. I think the other thing that really is important is managing the mental health aspect of it. I started working with a therapist who specializes in oncology patients, and I think, we can talk about the stigma of lung cancer and the stigma of mental health and sort of making sure that neither of those is present because I think going through this is hard enough.

How did stigma affect you?
When I was diagnosed and telling people other than my parents, literally every person I told the first question was, “Did you smoke?” I didn't. But really, why should that matter? Many years ago, I had a form of skin cancer. It was melanoma and (I) took it off and I'm fine. But you get melanoma, and no one says to you, “Did you sit in the sun?” “Did you use baby oil?” With that sort of a tone of voice that implies that you brought this on yourself.

I (recently) heard a statistic that 60% of patients with lung cancer are nonsmokers. So yes, smoking certainly is a contributing factor to lung cancer, but so are many other things. One of the issues of the stigma is the fact that it has led to, or because of the stigma, lung cancer receives so little funding and so little attention compared to how deadly it is.

How did you become a patient advocate?
It took me a while before I was really ready to jump in. Shortly after I was diagnosed, the New York chapter of the American Lung Association sponsored a walk that I participated in and raised a lot of money, so they asked me to speak. That really was my first step into advocacy.

At the time, I was stable in my disease and my youngest child was graduating from high school and I was finishing up a big volunteer position, so it felt like a good time in my life to really jump into the advocacy waters more and do that with more purpose. And the summer had some health challenges in terms of my health and my treatments, so this fall has been really where I feel like I have stepped up.

I feel good now and I want to show people that this is what stage 4 lung cancer can look like. I hear from a lot of people “wow” because I think they're expecting me to look different than how I do. Being able to use my voice, raise money, raise awareness and be a resource for people who are newly diagnosed is important. I was really lucky to have people who helped me when I was in that position, and I feel lucky to be able to help those who are coming to me.

How can other patients who want to get involved in advocacy get started?
There are many great organizations. American Lung Association is certainly one. There are events and walks, and other great opportunities for people to get involved. For example, if you're a part of a Facebook community and put it out there, “Hey, I live in Chicago and I'd like to get more involved, is anyone out there?”

Sadly, I think there are patients with lung cancer everywhere and opportunity for advocacy everywhere from the microlocal level. Live in a small town and have a small-town paper? There can be an editorial in that paper. And you can advocate to local elected officials at the state level for more funding and awareness.

 
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