Tag Archive for: small cell lung cancer patient story

Battling Small Cell Lung Cancer | One Man’s Journey

Battling Small Cell Lung Cancer | One Man’s Journey from Patient Empowerment Network on Vimeo.

Terrence’s diagnosis with extensive stage small cell lung cancer (SCLC) came as a shock. He learned the value of a positive attitude and how “just as in battle, I understood early on that a solid partnership with my healthcare team would be crucial to my outcome.” He shares his perspective, lessons learned, and how to stay [ACT]IVATED in your care.

Disclaimer: Thank you to small cell lung cancer expert Dr. Rafael Santana-Davila, PEN’s Empowerment Leads, patients, and care partners for reviewing and collaborating on this video. This video has been edited to protect the privacy of certain individuals, and the names and identifying details have been changed.

See More from [ACT]IVATED Small Cell Lung Cancer (SCLC)

Related Resources:

Lessons From a Small Cell Lung Cancer Care Partner

Moving Past Small Cell Lung Cancer Stigma | A Patient Navigator Explains

Small Cell Lung Cancer Care | Communication As a Key

Small Cell Lung Cancer Care | Communication As a Key


Transcript:

My name is Terrence, and I’m living with extensive-stage small cell lung cancer (SCLC). This diagnosis came as a shock, but I decided to persevere and fight. Cancer care can feel like a marathon, and certainly not a sprint – particularly for patients like me. As a small cell lung cancer survivor, I want to share my perspective and lessons learned from my cancer journey about staying ACTIVATED in your care.

My symptoms started with a cough that wouldn’t go away. As a military veteran, I assumed the cough was something I picked up years earlier. And even though I had been a smoker, my doctor didn’t order any scans as a pre-emptive screening measure, nor did I know what questions to ask. It wasn’t until I found a lump under my arm that further testing was done. It was at that time that I also put the other pieces of the puzzle together, which included symptoms of higher than normal blood pressure and knee pain.

I received chemotherapy and radiation, and also quickly learned that despite the challenges of treating my cancer, maintaining a positive attitude was the most critical part of my regimen. I was fortunate to have a medical team that listened to me and didn’t dismiss my concerns. Just as in battle, I understood early on that a solid partnership with my healthcare team would be crucial to my outcome.

Under the care of my healthcare team, I continue to receive scans of my lungs and brain every three months and feel grateful to be doing well. My care team and I also actively look for clinical trials that may be right for me. I urge other small cell lung cancer patients to ask your care team questions to learn about treatment options and what to expect during and after treatment – you matter. 

For the past decade, there have been a lot of research advancements about non-small lung cancer (NSCLC) treatment, but our small cell lung community is feeling left out of conversations about investments to improve lung cancer diagnosis and treatment. The SCLC patient community also deserves improvements in care and treatment. Fortunately, things are changing. Progress in personalized medicine has allowed scientists to develop targeted therapies tailored to a patient’s body using their genes to prevent, diagnose, or treat an underlying disease. Clinical trials are one opportunity to be on the ground floor of these developments where you may be able to get tomorrow’s medicine today. I hope sharing my perspective will make a difference for others. 

While the battle ahead has uncertainties, stay [ACT]IVATED with these tips:

  • Don’t allow stigmas to keep you from getting the best care, now is the time to get the right care no matter how you got the cancer.
  • Ask your care team questions to learn about small cell lung cancer treatment options and what to expect during and after treatment.
  • Ask if a clinical trial may be a potential treatment option for you.
  • Stay abreast of small cell lung cancer treatment options and research advancements.

Whether it’s combat in war or fighting cancer, no matter who you are, take it from me, attitude is everything. Stay [ACT]IVATED by being informed, empowered, and engaged in your small cell lung cancer care.


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Moving Past Small Cell Lung Cancer Stigma | A Patient Navigator Explains

Moving Past Small Cell Lung Cancer Stigma | A Patient Navigator Explains from Patient Empowerment Network on Vimeo.

Diana is a patient navigator who assists small cell lung cancer (SCLC) patients from the stages of screening through follow-up care. Diana explains SCLC risk factors, patients commonly diagnosed with extensive stage SCLC, and barriers to care. She shares the origin of some stigma about lung cancer. “Past TV ads to stop smoking built a stigma around cigarette smoking that has created an environment of blame around lung cancer.” She discusses how patients can stay [ACT]IVATED in their care and in improving future treatments.

Disclaimer: Thank you to small cell lung cancer expert Dr. Rafael Santana-Davila, PEN’s Empowerment Leads, patients, and care partners for reviewing and collaborating on this video. This video has been edited to protect the privacy of certain individuals, and the names and identifying details have been changed.

See More from [ACT]IVATED Small Cell Lung Cancer (SCLC)

Related Resources:

Battling Small Cell Lung Cancer | One Man’s Journey

Small Cell Lung Cancer Care | Communication As a Key

Small Cell Lung Cancer Care | Communication As a Key

Lessons From a Small Cell Lung Cancer Care Partner


Transcript:

My name is Diana, I’m a patient navigator. I help patients navigate screening, diagnosis, treatment, and follow-up care for small cell lung cancer. 

Small cell lung cancer (SCLC) makes up about 15 percent of lung cancer in the U.S. Many of these patients are diagnosed with extensive stage small cell lung cancer (ES-SCLC). Though being a current or former smoker increases the risk of SCLC, patients who were exposed to secondhand smoke, workplace carcinogens, environmental pollution, or other factors are also at-risk for SCLC.

Even though smoking is a major risk factor for SCLC, nobody deserves to get cancer. Nicotine is an addictive substance that is extremely difficult for many smokers to quit – especially for those who started at a very young age. Past TV ads to stop smoking built a stigma around cigarette smoking that has created an environment of blame around lung cancer. The stigma is many times greater for extensive stage small cell lung cancer patients. 

Patients diagnosed with SCLC can come from a variety of ethnic, racial, and social classes. However, patients from underrepresented communities of Black Indigenous People of Color (BIPOC), low socioeconomic, and LGBTQ+ groups often take on the brunt of inequitable care in the form of limited access to quality care, lack of healthcare insurance, and other barriers to care. 

Remember that you are the patient, and you have a choice in your treatment options depending on your goals for treatment and quality of life – no matter how you got the cancer. So stay encouraged as investments in SCLC research continue to fuel hope.

My [ACT]IVATION tips are:

  •   Make sure you have a full picture of available treatment options.
  •   Help educate others to raise awareness of SCLC; advocate for improved care.
  •   Inquire about small cell lung cancer clinical trials to help researchers discover new and refined treatments.

With these [ACT]IVATION tips in mind, remember, as a patient staying ACTIVATED in your cancer care is essential to becoming informed, empowered, and engaged in your care.


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