Overcoming Barriers to Accessing Small Cell Lung Cancer Care

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Patient Empowerment Network (PEN) has a deep commitment to educate and empower patients and care partners in the lung cancer community. Lung cancer treatment options are ever-evolving with new testing and treatments, and it’s essential for patients and families to educate themselves with health literacy tools and resources on updated information in lung cancer care. With this goal in mind, PEN created the [ACT]IVATED Small Cell Lung Cancer program, which aims to inform, empower, and engage patients to stay abreast of lung cancer care updates.

The [ACT]IVATED Small Cell Lung Cancer program is geared to newly diagnosed lung cancer patients, yet it is beneficial for limited stage and extensive stage patients alike and for patient advocates. [ACT]IVATED Small Cell Lung Cancer helps patients and care partners stay abreast of the latest options for their lung cancer, provides patient activation tools to help overcome barriers to accessing care and powerful tips for self-advocacy, coping, and living well with cancer.

SCLC [ACT]IVATED

Small Cell Lung Cancer and Proactive Patients

Unfortunately, the stigma of lung cancer follows small cell lung cancer (SCLC) patients as well. Patient navigator Diana explained some of the history of lung cancer stigma. “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.”

Advancing on the path to informed and optimal care requires patients to make efforts in self-education and empowerment. These efforts come in various forms but include approaches like improving clinical trial access, learning more from credible resources, asking questions to ensure your best care, and helping to educate others about lung cancer. Cancer patient Lisa Hatfield spoke with lung cancer expert Dr. Rafael Santana-Davila, Dr. Vinicius Ernani, and Beth Sandy to learn some key questions and actions for patients to take. 

Small cell lung cancer falls under one of two categories – limited stage or extensive stage. Dr. Rafael Santana-Davila explained the distinguishing factors and the importance of communication between the medical team members. “In the majority of cases, there’s a very clear distinction, for example, patient has metastatic disease to the liver, that clearly is extensive, stage, but there are occasions where, limited and extensive is very hard to know…all of medicine is a team sport, but treatment of cancer is more because the medical oncologists need to talk to the radiation oncologists to make sure that we’re on the same page as to what is the best treatment we can offer a patient.“

It’s essential for SCLC patients and care partners to prepare themselves for the treatment journey to help ensure their best care. Dr. Santana-Davila shared some key questions to ask to empower themselves for treatment. “…key questions that families should ask at the outset of care, and this is for extensive stage cancer as well as any other cancer, is ‘What are the goals of treatment? What do I expect it to be? How is my life going to look a few months from now? And what can I expect?’ That is, for me, very important that patients know before they start on the journey of treatment.”

Thoracic medical oncology nurse practitioner Beth Sandy from Abramson Cancer Center shared patient advice for questions to ask at the outset of care to help patients empower themselves. “…make sure you know your stage, make sure you’re understanding what your treatments will be, and then make sure you understand what support services are available to you.”

Patients from underrepresented communities and all patients should ask questions to help ensure optimal care. Dr. Santana-Davila shared advice on proactive questions to ask. “’What are the latest developments in the treatment of this lung cancer? And am I eligible to receive those treatments? And is this a time where I should seek a second opinion or be referred to a clinical trial and another center?’”

Nancy Gatschet

Nancy Gatschet

Small cell lung cancer patients must be heard by their doctors for their best care. SCLC survivor and PEN Board Member Nancy Gatschet shared her experience with her care team members and their roles in her care. “Doctors matter. A lot. I was treated at an NCI-designated Comprehensive Cancer Center by several exceptional doctors. What made them exceptional? Their listening and observational skills first and foremost, their dedication to staying current with research, and their caring.”

Small Cell Lung Cancer Clinical Trials and Future Treatments

 Clinical trials are vital for refining and advancing treatments for small cell lung cancer. Dr. Santana-Davila shared his perspective about clinical trials and also explained that many clinical trials can assist patients with transportation and lodging costs. “So it’s important for patients to consider clinical trials. That is where we’re analyzing the future medications, and many of those future medications will become the standard of care and by participating in clinical trials, patients will have access to those medications.”

Even though non-small cell lung cancer has had more treatment advancements in comparison to small cell lung cancer, that doesn’t mean that the future is bleak. Dr. Santana-Davila shared his perspective about the future of SCLC care and clinical trial opportunities. “So although it’s true that patients with non-small cell lung cancer have had more advances, there is still a lot of hope for the future. And what I can tell you it’s changing rapidly. And in a year, the treatments that we may have available will be different. And all those things are right now going into clinical trials.”

Dr. Vinicius Ernani from the Mayo Clinic sees a bright future for SCLC treatment as well. He shared his perspective with Lisa Hatfield, “…we have some important drugs coming in early development, like I mentioned before, ADCs, antibody drug conjugates. So my hope, that is we are going to be in a better spot in the near future.”

SCLC [ACT]IVATED

[ACT]IVATED Small Cell Lung Cancer Program Resources

The [ACT]IVATED Small Cell Lung Cancer program series takes a three-part approach to inform, empower, and engage both the overall lung cancer community and patient groups who experience health disparities. The series includes the following resources:

[ACT]IVATED Animated Video Series

[ACT]IVATED Expert Interviews

[ACT]IVATED Toolkit

[ACT]IVATED Guides

Though there are small cell lung cancer challenges and stigma, patients and care partners can take action to educate themselves to help ensure optimal care. We hope you can benefit from these valuable resources to aid in your lung cancer care for yourself or for your loved one.

Nancy’s Lung Cancer Journey

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No one is ever prepared to hear the words “You have cancer”. Even though (from asking for an x-ray that morphed into a CT scan) I knew there was a large tumor in the middle of my chest, I still wasn’t ready. And the pulmonologist was so kind in delivering the diagnosis. He went down the hall with the needle aspiration from my left clavicular lymph node and returned ½ hour later with a tri-fold paper towel on which he had drawn my lungs with the locations of the tumors – upper right lobe (T1), central lymph nodes of the mediastinal area (in total, about 2” x 5”), and one on the lymph node at my neck. And he said “You have small cell lung cancer (SCLC). There’s good news and bad news. The bad news is that it is extremely aggressive. The good news is that it is extremely responsive to treatment. If you are deemed to be “limited stage” (there are only 2 stages for SCLC – I call them good and bad), you have a 30% chance of long-term survival – a normal life.” In mid-August, I thought I’d be dead by Christmas. I spent about 2 minutes on the internet – what I saw was enough to tell me not to look further.

Doctors matter. A lot. I was treated at an NCI-designated Comprehensive Cancer Center by several exceptional doctors. What made them exceptional? Their listening and observational skills first and foremost, their dedication to staying current with research, and their caring. I was lucky – I didn’t have to search for them. These women – my primary care physician, my oncologist and my radiation oncologist kept me alive. They made me part of the 30%, even though my diagnosis said I was borderline extensive stage. It only took 5 months of chemotherapy (cisplatin and etoposide) and twice daily radiation during some of those 5 months, along with an episode of sepsis (broad-spectrum antibiotics, 2 blood transfusions, and a week in the hospital), to have me declared “No evidence of disease (NED)” by early December.

While my friends and family celebrated, I didn’t feel like celebrating. My life had been turned upside-down, I felt wrung-out and fatigued all the time, had lost so much weight that nothing fit, and had lost all my hair. And I knew that in January, I had to have 10 days of prophylactic whole brain radiation to kill any errant lung cancer cells (I was pretty sure it would make me stupid!) And that’s when my doctor prescribed an anti-depressant, which helped.

What did I do during this time – besides visit doctors and hospitals?  I walked – a lot. It was the easiest way for me to exercise, and my boxer was happy to help in that regard. I ate well – meaning lots of fruits and vegetables. And I meditated with guided CDs designed for cancer patients. And I kept up with my friends – often meeting one or more of them for lunch downtown. That not only passed the time but kept my spirits as up as they could be – a distraction if you will.

And when it was over, and I was deemed “cured”, I got angry. Angry that no one talked about the number one cancer killer. Through my doctor, I got in touch with the National Lung Cancer Partnership (now merged with the Lung Cancer Research Foundation), got involved in advocacy, and haven’t stopped. For me – it is healing to try to do something – anything – to prevent more people from going through what I went by raising awareness and research funding.

I have also learned that some treatments don’t let you forget that you had them. I had a CT scan every 90 days for the first 5 years after diagnosis. In the 4th year, they saw that my left ventricle was enlarged and referred me to cardiology for cardiomyopathy (heart failure). It was bad – so I went from surviving the #2 killer to facing the #1 killer! But with treatment from a cardiologist who specialized in heart failure from chemotherapy, I now have an implanted medical device, low-dose daily medication, and a nearly normal heart function. There’s also the foot neuropathy I’ve learned to live with (it’s not so bad) and some balance issues (likely from inner ear damage from cisplatin). But I’m alive!! Alive certainly beats the alternative.