Behind the Scenes

The Women of LCRF

12/13/2020

Our #VBGIVESBACK partnership with the Lung Cancer Research Foundation continues… You've met our woman of the quarter, Reina Honts, and learned her survivor story—and met more faces of lung cancer that defy stereotype. As Honts reminds us, if you have lungs, you can have lung cancer; you don't have to be a smoker. This is an issue that affects all of us.

Here, we get to know four more inspiring women from LCRF, each reflecting a different aspect of the organization's good works. Whether survivor, caregiver, doctor, researcher, all are on the ground and making a difference in lung cancer awareness.

Nicole Habib

Tell us about your personal connection to LCRF…
I lost my mom, Faye Marie, to lung cancer in 2011. It was one misdiagnosis after another followed by a very short battle. Dealing with my mom’s short lung cancer journey was extremely difficult, as you can imagine, and as an only child I felt especially isolated—I wanted to do what I could for families facing a lung cancer journey. In her honor, I created Team Mama Beeb to raise awareness and funding for research. I also named my daughter, Gracie Faye, after her glam-ma that she never got to meet.

Could you share some of the work you've done?
As a caregiver turned advocate, I worked to turn my frustration into action. I’ve been heavily involved with the lung cancer community in many ways for almost a decade, joining the cause a few months after my mom passed away. I started participating in walks in Philadelphia and then founded the NYC/Brooklyn event, and was the volunteer event chair for its first five years. I am also currently the co-chair for the Leadership Council for LCRF and strive to integrate the organization on not only a personal level, but also professionally, as best I can. I recognize the importance of advocacy partnerships within the healthcare industry. On a corporate level—as Senior Vice President, Management Director, at a healthcare advertising agency in NYC—I have been part of recruiting efforts for sponsors for events and have collaborated with the company I work for to get more folks involved year after year in local and social fundraising initiatives—from walk/run events to virtual happy hours and more. I am passionate about improving the quality of life for patients through collaborating with individuals and companies that can help change lives and share the same belief that lung cancer survival should be the expectation… not the exception.

“As a caregiver turned advocate, I worked to turn my frustration into action.”

What's your single most memorable moment with the organization?
In the five years that I have had the honor of being the event chair for NYC/Brooklyn, we raised over a quarter of a million dollars for vital research that can save lives. My most memorable moment was having the honor of announcing this to the crowd on event day during the opening rally. It was a cooler day, a bit rainy and definitely cloudy, but the energy and positivity felt from the crowd always brings out the sunshine, even if just for a minute. I vividly remember announcing our milestone and viewing the clouds open up to a brightly lit sky as the attendees cheered with pride and hope for the future of lung cancer. The sun always finds a way to come through on event day—I truly believe it is those that we are honoring letting us know they are still with us in spirit and proud of the work we are doing. We started small but mighty with only 50 attendees in our first year to having close to 500 in year five. I continue to be inspired by this community year after year.

By fundraising and joining on event days—live and/or virtual—you are bringing hope to those affected by the disease and to those who care about them. This research funding is critical because lung cancer is the leading cause of cancer death worldwide. Through fundraising and awareness efforts and events, I’m able to focus on the amazing memories of my mom, and stay positive for other families facing a lung cancer diagnosis and journey. I am grateful to LCRF for their dedication and passion toward the cause.

Jaymie Bowles

Tell us about your personal connection to LCRF…
LCRF was the first organization that I went to in support of my diagnosis of lung cancer. Prior to my involvement, I was living in my own world and going through my battle with a close circle of friends and family by my side. I got an invite to attend a science brunch from Nicole Habib, and something told me to just go. So, I went and ended up meeting an ALK+ survivor like myself with a very similar story. As I moved through the event, I kept meeting more and more people like me and it really helped take such a weight off my shoulders. LCRF gave me a community of support, a platform to speak, and an insider’s look into the behind-scenes-workings of the lung cancer community as a whole. They are at the forefront of research and development of medicines for patients like me.

Could you share some of the work you've done?
I have spoken at the Free to Breathe Walk in Brooklyn, co-hosted the virtual Free to Breathe Walk this year, and spoken at a handful of other LCRF events and panels. I also joined the Young Professionals Committee. And I was part of the Philadelphia education campaign, as well. Any chance the LCRF gives me to speak, I try to take advantage of the opportunity to share my story.

What's your single most memorable moment with the organization?
Speaking at the Free to Breathe Walk in Brooklyn in front of all of those people and leading a huge team across the Brooklyn Bridge. The feeling was amazing—I can't even describe the energy stemming from that event. There have also been countless encounters with other LCRF executives, staff members, scientists, and doctors that have really left me feeling wonderful.

“LCRF gave me a community of support, a platform to speak, and an insider’s look into the behind-scenes-workings of the lung cancer community as a whole.”

Dr. Katie Politi

Tell us about your personal connection to LCRF…
I have been working on lung cancer for approximately 16 years now and have seen first-hand how research has been instrumental for progress in our understanding and treatment of lung cancer. LCRF has contributed significantly to this progress over the years by consistently supporting lung cancer research and researchers, thus paving the way for the vibrant lung cancer research community that exists today. As a former LCRF grantee, I benefitted from this support during the early stages of my independent career and am excited to see LCRF thrive and continue in this important mission.

Could you share some of the work you've done?
As the chair of LCRF’s Scientific Advisory Board, I partner with world-renowned scientists, physicians and thought leaders in the field of lung cancer. We review and assess all of the research proposals submitted for funding by promising investigators. Together, we work to identify the very best science and top proposals, so LCRF can award research grants. It might seem like the challenge is identifying strong proposals, but in reality, there’s no shortage of fantastic science proposals that LCRF receives. Our wider challenge comes from not having the financial resources to fund all of the promising projects that LCRF receives; projects that could potentially provide better treatment options and extend the lives of people facing a lung cancer diagnosis.

What's your single most memorable moment with the organization?
It is hard to pinpoint one moment—there are several! I remember receiving a call to let me know that I had received an LCRF award (several years ago) which was tremendously exciting for me. Now, as Chair of the Scientific Advisory Board, I like to let people know, in person, that their research will be funded because of the excitement that I remember feeling.

Dr. Narjust Duma

Facing a cancer diagnosis, among other things, is perhaps one of the loneliest feelings in the world. You’re immediately met with shock, fear, and worry. But if you’re lucky, you know that you’ll have family and friends to support and fight with you along the way. Unfortunately, many women who are diagnosed with lung cancer don’t have this luxury.

As we spoke with Dr. Narjust Duma—Assistant Professor of Medicine - Thoracic Oncology at the University of Wisconsin Carbone Cancer Center, who reviews grants for LCRF—we began to understand just how stigmatized the deadly disease is, especially for women. Sharing your cancer diagnosis is usually met with an “I’m sorry,” and an abundance of support and love. But sharing your lung cancer diagnosis is almost always met with this question: “Do you smoke?”

This unfair assessment can lead to more loneliness, or even hiding the diagnosis altogether and suffering in silence. The pressures these women face, the majority of which are non-smokers, are daunting. Dr. Duma takes us through these stories, her everyday work, and why supporting LCRF, our latest #VBGIVESBACK partner, ultimately supports the women patients who so badly need and deserve it.

“The goal of my clinic is to offer treatment, but also protection and support... I think having a stigma-free, welcoming environment is so important.”

Tell us about your personal connection to LCRF…
I specialize in women's lung cancer. 85% of the patients at my clinic are women and the majority have never been smokers. And I often don’t call them my patients… I call them my women. I always want to provide that extra layer of support because of the stigma around the disease. The goal at my clinic is to create an environment where nobody feels that they deserve to have lung cancer. I’ve seen many of my women try to cover up their diagnosis by wearing all pink [for breast cancer awareness]. My connection with LCRF began after meeting Dr. Brendon Stiles and Dr. Joan Schiller. They’re both part of the Board of Directors for the organization, and Dr. Schiller was also one of the pioneers for women with lung cancer. We met here Madison, Wisconsin, and I started to become very involved with the yoga events. In fact, I encourage all my women now to meditate and do yoga—I have even downloaded meditation apps for my 80-year-old patients on their cell phones. I also review grants for the organization. So, I am connected in many, many ways.

You mentioned your clinic. Could you tell us more about that?
I’ve had an interest in starting a clinic for women with lung cancer for some time. When I was training, I had a patient who changed my career pathway. I wrote an article about her story, which you can read here. She was a young woman, never smoked, and the very first thing she said when I told her she has lung cancer was, “Please don’t tell my family.”

She was afraid that her family and her church would be judgmental about it. We went through her journey together for a year and half. She even went the extra mile with the ER doctors—writing them notes to please not tell her family she had lung cancer. When she died, I couldn’t bring myself to go to her funeral because, as her doctor, I couldn’t lie. Her husband and children did find eventually out, but even her obituary said that she died of breast cancer and the family donated $10,000 to the Breast Cancer Research Foundation. And I can tell you, I cried for almost an hour about it. Dealing with that level of stigma is heartbreaking and it changed the course of my life’s work and career. I knew that women like her needed me and I wanted to be an advocate for destigmatizing the disease.

Another aspect of lung cancer is the sexual dysfunction women go through. Add to that the financial toxicity. Many of my women end up with very high co-pays and that’s a burden that’s often not talked about. And so many of these women are working women, too. Having childcare or the time off to even visit the clinic are struggles in their own right. I know doctors that don’t want to have their clinic open on Fridays, but having mine open has been a blessing for my women. Taking off on a Friday afternoon is often the easiest way to knock out the appointment for them.

“She was a young woman, never smoked, and the very first thing she said when I told her she has lung cancer was, ‘Please don’t tell my family.’”

The stigma women face with lung cancer…
Think about it like this: Every time a patient says they have lung cancer, people don't say, “I'm sorry.” The first question they ask is if you are a smoker. If you get diagnosed with colon cancer, people will say "I’m sorry" right away. They don't ask if you eat red meat.

It’s also an underfunded disease. There's more dying of lung cancer than breast, ovarian and colorectal cancer, and it’s still funded less by the National Cancer Institute. So, I think there are a lot of discrepancies. The goal of my clinic is to offer treatment, but also protection and support. Many of my patients talk to me about vaginal dryness and then they’re able to go back to their primary oncologist and address these issues. I think having a stigma-free, welcoming environment is so important.

It takes a woman three times longer to be diagnosed with lung cancer than a man. Because many of them have never been smokers, they get diagnosed with other things like asthma or get sent to have a mammogram done. Even if the main complaint is shortness of breath, the assumption is that they can’t have lung cancer because she never smoked. So, there are a lot of delays in diagnosis. The more women I meet, the more stories I hear, and it breaks my heart.

How are you spreading the word in your community and beyond?
I think communicating the research is important—data speaks more than anything. I can easily show my study with numbers. There was a study that showed women were more likely to refuse treatment as compared to men because they were worried about the financial consequences to their families. Before the pandemic, I used to travel around the rural areas to give talks, because I think there is a lot of disparity in those parts. And I write. I do a lot of writing because I think it’s very important to share stories about my patients. People are more likely to remember a story. The article I mentioned earlier reached a lot of people. I had emails, messages, and calls from around the world relating to it. I’ve also written about how COVID-19 has affected my work and patients. That article was titled, “The Dragon” and it also made quite an impact.

And lastly, what's your single most memorable moment LCRF?
The connections I’ve made. Recently, we gathered on Zoom and we meditated. And for a minute, I felt like we were all together again. That’s a moment I’ll always remember.