Young Lung Cancer Initiative Podcast

Michael Blackstone thought he was dealing with a shoulder problem. Testing led to a stage 4 lung cancer diagnosis.

In this episode of Patient Conversations with Leah Phillips, Michael shares his experience of getting diagnosed, living on daily targeted therapy, and facing progression and treatment decisions. They talk about the impact on caregivers, the emotional weight of taking a pill every day, and why Michael decided to share his story publicly.

Michael also reflects on how cancer changed his plans, his relationships, and what he no longer takes for granted.

In this episode

• From shoulder pain to a stage 4 lung cancer diagnosis
• Telling family and adjusting plans for the future
• The impact of cancer on caregivers
• Living with targeted therapy and daily medication
• Progression, radiation, and treatment uncertainty
• Sharing his story publicly and finding community

Chapters
00:00 Preview
00:22 From shoulder pain to a stage 4 diagnosis
01:39 How Michael got the news
05:29 Telling his wife and family
06:19 How cancer changed his plans
12:07 What he no longer takes for granted
13:34 The impact on caregivers
18:07 Living with targeted therapy
23:28 The emotional weight of daily medication
26:31 Deciding to share his diagnosis publicly
31:09 Why patient stories matter
33:23 Awareness, funding and stigma
34:46 Progression, radiation and uncertainty
41:16 His perspective on stage 4
44:07 How stage 4 is portrayed
47:30 Difficult conversations about the future
49:55 Community and advocacy
52:58 Closing thoughts and YLCI resources

Get involved in Humans of Lung Cancer
This November, Young Lung Cancer Initiative, EGFR Resisters and Oncogene Cancer Research are sharing the people and lives behind the diagnosis. Share your story, create a card or add a campaign profile frame:
https://humans-of-lung-cancer.web.app/

About Young Lung Cancer Initiative
Young Lung Cancer Initiative (YLCI) is a 501(c)(3) nonprofit supporting young adults affected by lung cancer and their families through education, advocacy, research and community resources.

Learn more: https://ylci.org/
Resource Directory: https://ylci.org/resource-directory/
Join the free YLCI Circle: https://ylci.org/join-the-ylci-circle/
Faces of YLC: https://ylci.org/faces-of-ylc/
Instagram: https://instagram.com/younglungcancer
Donate: https://ylci.org/donate/

Medical disclaimer
This podcast is for educational and informational purposes only and does not constitute medical advice. The stories and information shared reflect individual experiences. Every diagnosis, treatment plan and outcome is different, and what you hear may not apply to your situation. Always consult your oncologist or another qualified healthcare provider with questions about your health or treatment.

Aurora's journey from misdiagnosis to stage four lung cancer diagnosis highlights the challenges and emotional impact of survivorship. The delayed diagnosis, treatment options, and the emotional toll of progression are key themes in her story. Aurora Lucas shares her journey of being diagnosed with stage four lung cancer, her experience with radiation treatment, and the emotional impact of the diagnosis. She also discusses the impact of the diagnosis on her future plans, fertility, and the importance of advocacy in the lung cancer community.

Takeaways

• Resilience
• Delayed Diagnosis Radiation treatment and the emotional toll of a stage four lung cancer diagnosis.
• The impact of the diagnosis on future plans, fertility, and the importance of advocacy in the lung cancer community.

Chapters

• 00:00 The Misdiagnosis
• 01:16 Navigating Symptoms and Seeking Answers
• 12:22 The Impact of Stage Three Diagnosis
• 26:14 Progression to Stage Four
• 31:39 Diagnosis and Treatment
• 33:32 Impact on Future Plans and Fertility
• 45:42 Advocacy and Community Support

About Young Lung Cancer Initiative

Young Lung Cancer Initiative (YLCI) is a 501(c)(3) nonprofit organization supporting young adults and people without a smoking history who are affected by lung cancer. Through education, advocacy, research, and community resources, YLCI works to increase awareness, improve understanding, and ensure that no one faces young lung cancer alone.

Learn more: https://ylci.org
Resource Directory: https://ylci.org/resource-directory/
Instagram: https://instagram.com/younglungcancer
Donate: https://ylci.org/donate/

Medical disclaimer: This podcast is for educational and informational purposes only and does not constitute medical advice. The stories and information shared reflect individual experiences. Every diagnosis, treatment plan, and outcome is different, and what you hear may not apply to your situation. Nothing in this podcast is a substitute for professional diagnosis, treatment, or advice from your medical team. Never disregard or delay seeking medical advice because of something you heard here. Always consult your oncologist or another qualified healthcare provider with questions about your health or treatment.

Mayya also shares the reality of living with metastatic lung cancer while raising two young children. She discusses working with a child life specialist, explaining cancer to a preschooler in age-appropriate language, and why she chooses to let her children see some of the difficult emotions that come with cancer.

Finally, Mayya and Leah discuss early progression and short responders, why patients who progress earlier than expected can feel isolated even within the lung cancer community, the need for greater research and attention to this population, and the many different ways patients and families can participate in lung cancer advocacy.

CHAPTERS
00:00 Early Progression & Becoming a Short Responder
00:14 Mayya’s Lung Cancer Update
01:35 Finding Out Her Cancer Had Progressed
03:08 Second Opinions & Testing for Resistance
05:02 When Chemotherapy Became the Next Step
09:04 Living With Stage IV Lung Cancer & Uncertainty
10:55 Talking to Young Children About Cancer
17:34 Early Progression, Short Responders & Advocacy

Mayya previously shared her lung cancer story with YLCI in a three-part series, including her diagnosis with stage IV ALK-positive lung cancer at age 39, starting targeted therapy, navigating treatment as a young adult and mother, and seeking expert care.

Medical disclaimer: All content on this channel is for educational and informational purposes only and does not constitute medical advice. The stories and information shared reflect individual experiences; every diagnosis, treatment plan, and outcome is different, and what you see here may not apply to your situation. Nothing on this channel is a substitute for professional diagnosis, treatment, or advice from your own medical team. Never disregard or delay seeking medical advice because of something you watched here. Always consult your oncologist or another qualified healthcare provider with any questions about your health or treatment.

Is it menopause... or the cancer treatment? Brain fog, hot flashes, vaginal dryness, joint pain, mood changes, sleep problems... many of these symptoms can be caused by menopause, lung cancer treatment, or both. So how can women tell the difference?

Dr. Narjust Florez, thoracic oncologist and co-director of the Young Lung Cancer Program at Dana-Farber Cancer Institute, and Taryn join YLCI's Leah for an evidence-based conversation about navigating perimenopause and menopause during and after lung cancer treatment.

This episode covers:

✔️ How to tell whether symptoms are menopause, cancer treatment, or both
✔️ Why young women with lung cancer can experience early menopause
✔️ Hormone testing and when it may be helpful
✔️ Is hormone replacement therapy safe after a lung cancer diagnosis?
✔️ Vaginal estrogen, hot flashes, and non-hormonal treatment options
✔️ Finding a menopause specialist who understands cancer care
✔️ Protecting bone health, heart health, skin, hair, and sexual health
✔️ Acupuncture, exercise, and other evidence-based supportive care
✔️ Why you don't have to suffer through menopause alone

⏱️ Chapters:
0:00 Introduction
0:36 Menopause or Cancer Treatment?
2:45 Hormone Replacement Therapy
6:03 Finding a Menopause Specialist
7:43 Feeling Like Yourself Again
11:58 Wellness Clinics & Hormones
14:01 Hormone Testing
15:03 Long-Term Health After Menopause
17:47 Final Advice

🔗 Young Lung Cancer Program at Dana-Farber: https://www.dana-farber.org/cancer-care/treatment/cancer-care-programs/young-lung-cancer-program

🔗 YLCI Resource Directory: https://ylci.org/resource-directory/

🤍 Young Lung Cancer Initiative | https://ylci.org

Medical disclaimer: All content on this channel is for educational and informational purposes only and does not constitute medical advice. Always consult your oncologist or another qualified healthcare provider with any questions about your health or treatment.

Is it safe to have sex during lung cancer treatment? How do you handle body image after surgery, scars, or hair loss?? Dr. Narjust Florez and Taryn, who lead the Young Lung Cancer Program at Dana-Farber Cancer Institute, join YLCI's Leah for an open, judgment-free conversation covering sex, intimacy, body image, and contraception after a lung cancer diagnosis.

This episode covers:
✔️ Why sexual health gets overlooked in oncology visits
✔️ What "sexual health" actually includes (it's not just intercourse)
✔️ Is it safe to have sex during chemo, immunotherapy, or targeted therapy?
✔️ Loving your body after surgery, scars, and treatment side effects
✔️ Performance anxiety and body image — for men too
✔️ Safest birth control & contraception options during cancer treatment
✔️ How to normalize these conversations with your care team

⏱️ Chapters:
0:00 Sexual Health & Cancer Care
1:23 Redefining Sexual Health
4:01 Safety During Treatment
5:50 Loving Your New Body
8:21 Body Image & Performance Pressure
11:47 Contraception & Birth Control Options
18:34 Normalizing the Conversation

🔗 Young Lung Cancer Program at Dana-Farber: https://www.dana-farber.org/cancer-ca...
🔗 YLCI Resource Directory: https://ylci.org/resource-directory/
🔗 https://www.dana-farber.org/newsroom/news-releases/2022/sexual-dysfunction-high-among-women-with-lung-cancer

🤍 Young Lung Cancer Initiative | https://ylci.org

Add your photo to the Faces of YLC gallery: https://ylci.org/faces-of-ylc/
Instagram: https://instagram.com/younglungcancer
TikTok: https://tiktok.com/@younglungcancerisathing
Facebook: https://facebook.com/younglungcancer
LinkedIn: https://linkedin.com/company/young-lung-cancer-initiative
Donate: https://ylci.org/donate/

Young Lung Cancer Initiative's work is made possible by the support of our Mission Support Partners: Johnson & Johnson, Nuvation Bio, and Boehringer Ingelheim.

YLCI retains full editorial control over all content, which is produced independently of our partners.

Medical disclaimer: All content on this channel is for educational and informational purposes only and does not constitute medical advice. The stories and information shared reflect individual experiences; every diagnosis, treatment plan, and outcome is different, and what you see here may not apply to your situation. Nothing on this channel is a substitute for professional diagnosis, treatment, or advice from your own medical team. Never disregard or delay seeking medical advice because of something you watched here. Always consult your oncologist or another qualified healthcare provider with any questions about your health or treatment.

A lung cancer diagnosis raises urgent questions about treatment. For young adults, it also raises ones that too often go unspoken: Can I still have children? Is it too late once treatment starts? And whose job is it to bring this up?

Host Leah Phillips sits down with Dr. Narjust Florez, thoracic oncologist and co-founder & co-director of the Young Lung Cancer Program at Dana-Farber Cancer Institute, and Taryn Lipner, program administrator, for an honest conversation about fertility preservation and family building after a lung cancer diagnosis.

The core message: fertility is health care, and raising it is the oncology team's responsibility, not one more thing patients should have to remember. Dr. Florez breaks down why the belief that "if you didn't do it at the beginning, you can't do it later" is "very 2003," walks through the real options for men and women, and explains what's possible even when treatment can't wait.

In this episode:

• Why fertility is part of cancer care, not an afterthought
• Why starting the conversation is the care team's job, not the patient's
• Fertility preservation options for men and women
• What to do when treatment can't wait
• How chemo, radiation, and immunotherapy affect fertility
• Building a family beyond biology: adoption, surrogacy, donation
• Navigating costs, insurance, and financial support

Chapters (verify against final edit):
00:00 Introduction
00:54 Whose responsibility it is to start the conversation
02:39 Fertility preservation options
05:54 Does fertility recover after treatment?
06:32 When treatment has to start right away
08:19 Advice for the newly diagnosed
10:14 Informational visits and the financial side
11:32 Family building beyond pregnancy
12:43 How treatments affect fertility
14:48 One message every young patient should hear

Follow Young Lung Cancer Initiative for more on fertility, intimacy, relationships, and life with lung cancer.

Subscribe on YouTube, Spotify, and Apple Podcasts.

Disclaimer: This conversation is for educational purposes only. Always talk to a healthcare professional about your individual situation.

When you're diagnosed with HER2 lung cancer, most people around you have never heard of it. In this final episode, Samantha and Loryn talk about what it meant to find each other and a community that actually understands. They cover where to find other HER2 patients, how social media opened doors that didn't exist before, what YLCI has meant to both of them, and why connection changes how you navigate this disease.
This is Part 3 of a 3-part conversation. Watch Parts 1 and 2 on our channel.

Thanks to Boehringer Ingelheim for sponsoring this series.

YLCI retains full editorial control.

Chapters:
00:00 The Importance of Community in Cancer Journeys
02:17 Finding HER2 Positive Lung Cancer Patients
04:11 The Role of Social Media in Advocacy
06:46 The Impact of Young Lung Cancer Initiative
08:58 Navigating Support Systems
11:44 Building Connections and Future Initiatives


This content is for informational purposes only and is not medical advice. Always seek the advice of your physician or other qualified health provider with any questions regarding a medical condition.

Two women with HER2 driven lung cancer open up about what treatment, grief, and living with stage 4 really looks like from the inside. This is what people don't see.
Samantha and Loryn were both diagnosed with HER2 lung cancer in their 30s. In this episode they share what their treatment journeys actually looked like, why second opinions changed everything, how a stage 4 lung cancer diagnosis reshapes your identity and relationships, and what they're still grieving that the people around them never see.
HER2 mutated ung cancer affects roughly 2 to 4 percent of lung cancer patients. But the medical side is only part of the story. This conversation goes deeper into what it means to live with this diagnosis as a young person, a parent, a partner, and a patient who is still figuring out how to plan for a future that feels uncertain.
Topics covered in this episode:
What HER2 lung cancer treatment actually looks like, including traditional chemotherapy, targeted therapy, and when to consider switching
Why both Samantha and Loryn sought multiple opinions and how that shaped their care
How lung cancer changes your sense of identity when the things that defined you start to shift
The impact on careers, relationships, and the caregiver-patient dynamic
What it feels like to grieve your future while still being here
How to balance planning ahead with living in the present when you scan every few months

Thanks to Boehringer Ingelheim for sponsoring this series.

YLCI retains full editorial control.

Chapters:
00:00 Navigating the Journey of HER2 Lung Cancer
01:37 Treatment Experiences and Decisions
03:27 The Importance of Second Opinions
04:48 Advocating for Yourself in Treatment
06:41 Impact on Personal Identity
09:16 Changes in Relationships and Daily Life
12:22 Emotional Challenges of Cancer
16:22 Balancing Future Planning with Present Living

⚠️ Disclaimer
This content is for informational purposes only and is not medical advice. Always seek the advice of your physician or other qualified health provider with any questions regarding a medical condition.

"I Googled it. It says poor prognosis. It put me in a really dark place." -Samantha
Samantha Murrell and Loryn Fadus are two young women living with HER2 mutated ung cancer. In this first conversation, they sit down with YLCI co-founder Leah Phillips to talk about the road to diagnosis- the missed windows, the misdiagnoses, the shock of hearing "stage four," and what they wish they had known from the start.

This is Part 1 of a three-part conversation. Parts 2 and 3 cover treatment decisions, living with HER2 lung cancer, and what community has meant to both of them.

Chapters
00:00 Introduction
00:53 Samantha's first symptoms
02:32 Hearing the diagnosis
03:42 Stage four and an initial prognosis
04:30 Discovering HER2 Exon 20 Mutation through biomarker testing
05:23 "I thought lung cancer was the one I couldn't get"
07:14 Loryn's symptoms and the path to diagnosis
13:44 Learning about HER2 and finding hope
15:02 What to tell your newly diagnosed self
16:02 Misunderstandings about oncogene driven lung cancer
18:32 What's coming in Part 2

This series is proudly sponsored by Boehringer Ingelheim. YLCI retains full editorial control of all content.

⚠️ Disclaimer
This content is for informational purposes only and is not medical advice. Always seek the advice of your physician or other qualified health provider with any questions regarding a medical condition.

In Part 3 of our HER2-driven lung cancer series, Leah Phillips and thoracic medical oncologist Dr. Kyle Concannon (UC Health, University of Colorado) tackle the harder questions. They get into what resistance actually means, the difference between on-target and off-target resistance, why a cancer can sometimes transform into a different type entirely, and the emerging research and combination approaches being studied for HER2 lung cancer patients.

This is a conversation many patients will eventually need to have. The research is moving fast and there is real reason for hope.

Thanks to Boehringer Ingelheim for supporting this series. YLCI retains full editorial control.

This content is for informational purposes only and is not medical advice. Always seek the advice of your physician or other qualified health provider with any questions regarding a medical condition.