Walkers from all over the country joined the Free to Breathe Walk livestream on Saturday morning, October 3. Nydia Han from 6abc Philadelphia and radio personality Jaymie Bowles emceed a lively event with special guests Dr. David Spigel and stage IV lung cancer survivor Jen Cosgrove.
In case you missed it, you can watch it here. The recording is also available on Facebook Live.
It’s not too late to donate! Visit LCRF.org/GiveNow.
Disparities in cancer outcomes are unacceptable and remain a critical issue for Black Americans and other underserved populations, as evidenced by the American Association for Cancer Research (AACR)’s Cancer Disparities Progress Report and a recent NBC News story referencing it. LCRF applauds AACR for taking this important step in better highlighting these challenges and publishing this report.
LCRF is dedicated to making an impact on this important topic. Through our Research Grant on Disparities in Lung Cancer, we have supported projects aimed at overcoming disparities in the diagnosis of lung cancer, improving access to lung cancer screening, improving access to equitable care, and developing a better understanding of the biological differences in responses to treatment.
Recognizing that this work only represents a sliver of the full scope of issues we are faced with, we are proud of the work being done by all investigators, whether funded by LCRF or other organizations, to make an impact on improving health equity. We look forward to supporting additional projects in the coming months and further expanding our program to address issues such as these and others in 2021 and beyond.
By Sarah Miretti Cassidy, Director of External Affairs, Cancer Hope Network
Ellen’s commitment to patient advocacy is hard-won. A non-smoker, she was diagnosed with ALK + adenocarcinoma in 2016, following nearly 7 years of waiting and inconclusive tests. “I was under the care of a pulmonologist and an internist. I went to my spine specialist because of back pain and he noticed the nodule we’d been watching had grown. My diagnosis was an incidental finding.”
“I tell people now, if you have a nodule and they haven’t really followed up, don’t accept that. If you’re still concerned, insist that you go and have it checked again. I’m a perfect example of being told not to worry, that I’m low risk and a nonsmoker. Listen to the warning signs, go with your gut.”
Like so many others fighting lung cancer, Ellen’s diagnosis was met with a barrage of insensitive comments – from people telling her daughter “I didn’t know your mother smoked,” to the repeated assumption that Ellen had brought on her cancer fight because she’d “done something reckless.” Initially, she felt a need to defend herself: “I had lung cancer, but never smoked.” She is grateful that growing education has made those reactions less common. “Women who have breast cancer don’t make excuses or have to justify having cancer. Neither do I.”
In the terrifying first days of her diagnosis and treatment with chemo and surgery, Ellen called Cancer Hope Network and was connected to two volunteers. Their conversations were helpful, but she wanted to connect with someone whose diagnosis mirrored hers more exactly. “I made a vow to myself that if I could get past that year, I wanted to give back and to make sure that someone else who felt the way I did in that moment would have someone who’d been there.”
Three years ago, she fulfilled that vow, completing training and making her first match. It’s a relationship that continues to this day. Other times, she’ll connect with a patient who only need a call or two to provide hope. She’s completed nearly 100 match visits with 11 clients.
“I feel a sense of satisfaction when I hang up and know they feel a little better,” she says. “Both of us are getting a lot out of it. I feel satisfaction being able to share my experiences and compare with theirs. We find out there are so many similarities. You can be so very different in personality or life circumstance, but there is a common element. Once we start talking, it’s very easy. There’s a flow.”
She recalls a CHN Volunteer celebration where she shared a table with a fellow lung cancer survivor who was 12 years post-diagnosis. “It was so hopeful to see people who were further along than I am. Now, I’m giving that to people. They’re just going through the beginning of it and they can see their future when they see that I’m doing ok.”
By nature a worrier (“This is the worst possible thing to happen to a worrier!”), cancer was an opportunity for Ellen to reevaluate. “Now, I’m trying to take each day as it comes. Even with my doctors, I don’t want to get too much ahead of myself. When I’m feeling good, I embrace the happiness, I look forward to things. I try not to spend too much time thinking negatively because it affects me physically.”
She encourages her matches with a mix of practical suggestions (“Keep notes about treatments and tests and how you’re feeling in a book. It makes it easier to go back and remember. It helps you to focus on what’s most important when you’re with your oncologist. And it helps keep you from seeming like a hypochondriac when chemo brain has you forgetting what you’ve said.”). She also offers thoughts on the larger picture (“Anything traumatic you go through, hopefully you learn lessons for when things are better. One of the keys to my recovery was having people around lifting me up when I was down.”)
She’s focused on providing practical support when people are in need – answering and making calls to matches with the lightning speed of an expert realtor – and remembering that just checking in can make a big difference. “When I got sick, many of my friendships changed. People always say that you find out who your friends are when bad things happen. I didn’t think about it much until I got sick.”
Ellen was astonished when friends she’d considered close stepped away and encouraged as other, less “likely” friends stepped up to provide support and comfort. “I take my friendships more seriously now. I choose more carefully. I want to be with people that I enjoy being with, who I have found are my true friends.”
She’s found happiness, despite the trauma of diagnosis and treatment. “Everything is better now. Having gone through the darkness and feeling better makes me appreciate life more. People used to tell me ‘don’t sweat the small stuff’ and I found that easier said than done. Now, I have perspective when things start to bother me, when I start to get upset about things I don’t have control over, I remember how fortunate I am.”
“I’m really very happy that I volunteered. Some of my friends have asked if I think it’s helping me. I feel better helping someone. There’s a reason that it happened. I’m getting something out of it – I’m helping someone else.”
To learn more about volunteering, or to sign up for the join LCRF/Cancer Hope Network volunteer training session on October 12-13, contact Rachel DiQuattro at (908) 879-4039 or visit LCRF.org/CHN-volunteer.
Erika Hlavacek passed away on April 27, 2022 from complications caused by Stage IV lung cancer. She was 47.
Erika was a board member at ALK Positive Inc., served on multiple committees for industry groups and founded two nonprofits. You can read about yEAHbestlife below. In 2021, she became a founding parent and founding board member of Pickles Group, which benefits children of parents with cancer through peer support groups.
July 2020
In 2017, Erika Hlavacek went to the hospital after a persistent cough and back pain became unbearable. She was discharged 10 days later with a Stage IV lung cancer diagnosis.
But thanks to research, she’s living her best life. After the cancer spread to her brain, she was treated with medications that had been approved less than a year before she needed them. Two drugs and three weeks later, the brain tumors were gone.
Erika has founded a brand and nonprofit dedicated to fundraising for lung cancer research. According to the yEAHbestlife website, she was surprised during a girls’ weekend with matching shirts that said “Best Life” on them. This inspired her to design a “Live Your Best Life” themed shirt for an upcoming event. The design was so well-received that she saw potential in using shirt sales as an avenue for raising awareness and funds. The name “yEAHbestlife” includes Erika’s initials: EAH.
Her story was featured on NBC 5 Chicago, highlighting recent FDA approvals for lung cancer treatment.
July 2020 | As told by Lea
I always considered myself healthy. I used to have asthma, but I considered it a non-issue since it is under control – I haven’t had asthma attacks or symptoms in years.
In the summer of 2018, my husband and I went on vacation, and when we returned I noticed I developed a terrible cough. It wouldn’t stop for three weeks straight, and I even noticed a little tinge of blood came out when I coughed. It really concerned me.
Not too long after, I hosted some family members at my house. My brother-in-law is a doctor and my daughter is a nurse. When I told them how I have been feeling, they both were very concerned and made me promise to visit my doctor for a checkup. I made an appointment with my primary care provider, who ordered a chest X-ray.
The X-ray revealed a tumor on my right lung. I turned to my brother-in-law for advice, and he recommended that I have a bronchoscopy and other testing to get an understanding of what this tumor was. After several tests, I found out the tumor had spread to the upper, mid, and lower lobe of my right lung; and I also had a few small nodules. When I was diagnosed with Stage 4 metastatic lung cancer in August 2018, it was completely overwhelming and I felt so lost.
The oncologist sent the tissue for biomarker testing, and it turned out that I have the EGFR mutation. I am so grateful for biomarker testing because it helped open up more treatment options that have turned out to be right for me. My oncologist decided the best treatment for my case was a targeted therapy – Tagrisso – to treat patients with the EGFR mutation.
To be honest, I wasn’t sure how to feel about undergoing further lung cancer treatment after my surgery. I really had to think about what that meant for me. So what I did was looked online – I read so many articles and informational materials on what to expect. After educating myself about Tagrisso and other lung cancer treatment options, I felt confident that I was doing the right thing for my health. I also had my faith to keep me strong throughout my journey. I’ve been on Tagrisso since October 2018.
My first CT scan after beginning treatment was in December 2018. The scan showed that my remaining nodules had shrunk in half! Since then, I haven’t experienced any major side effects or even symptoms of lung cancer since my very first difficult cough, right before I got diagnosed. I have my fifth scan coming up in August, and I have nothing but great expectations that it will go well!
I found LCRF through the #TogetherSeparately Facebook group, and I’ve enjoyed being part of this wonderful community where I can connect with other lung cancer patients and survivors. It is my new mission to share my story with others who are on the same journey. I know how overwhelming it can be to have lung cancer, but I urge every new patient to keep talking to your doctor and learn as much as you can about treatment options.
I also advocate for earlier screening and detection of lung cancer, and I’m happy to see the new recommendations for expanding the population who should be screened. I have joined a patient advocacy group called the EGFR Resistors. I hope my story is helpful to those who are reading it, and I am happy to chat with any patients. Please join the Facebook group at facebook.com/groups/lungcancercommunity and say hello!
The U.S. Preventive Services Task Force has drafted recommendations that would expand yearly lung cancer screening.
The draft guidelines would lower the eligibility age for lung cancer screening from 55 to 50. Lighter smokers could obtain screening as well. If the guidelines go through, the number of people who qualify for screening will nearly double.
A newer study found that these groups are about as likely to benefit from screening as older people who smoke heavily.
The changes would benefit women and African Americans in particular, according to experts. See detailed coverage at NBC News and the Los Angeles Times.
In 2017, Erika Hlavacek went to the hospital after a persistent cough and back pain became unbearable. She was discharged 10 days later with a Stage IV lung cancer diagnosis.
But thanks to research, she’s living her best life. After the cancer spread to her brain, she was treated with medications that had been approved less than a year before she needed them. Two drugs and three weeks later, the brain tumors were gone.
Erika has founded a brand and nonprofit dedicated to fundraising for lung cancer research. According to the yEAHbestlife website, she was surprised during a girls’ weekend with matching shirts that said “Best Life” on them. This inspired her to design a “Live Your Best Life” themed shirt for an upcoming event. The design was so well-received that she saw potential in using shirt sales as an avenue for raising awareness and funds. The name “yEAHbestlife” includes Erika’s initials: EAH.
Her story was featured recently on NBC 5 Chicago, highlighting recent FDA approvals for lung cancer treatment.
Research is changing what it means to receive a lung cancer diagnosis. Find out how supporting research has impacted how this disease is treated, and read other patients’ stories.
