Guests/Speakers
James Hiter (Host): LCFA Speakers Bureau. James is living with lung cancer and is the founder of Streak For a Cure, a nonprofit raising awareness and funding for lung cancer research.
Jane Perlmutter: Lung cancer survivor, LCFA Speakers Bureau member, and patient advocate. Jane was diagnosed with breast cancer in her early 30s, more than 40 years ago. She has been living with lung cancer for about four years and has spent decades helping newly diagnosed patients and working alongside cancer researchers.
Most people never hear the term PD-L1 until after a lung cancer diagnosis. Yet the PD-L1 biomarker is one of the most important clues in planning treatment today. Host James Hiter, who is living with lung cancer, talks with fellow LCFA Speakers Bureau member Jane Perlmutter. Jane has been living with cancer for more than 40 years and brings both lived experience and deep research knowledge to this conversation about PD-L1, biomarker testing, and speaking up for yourself.
Anyone with lungs can get lung cancer. Jane’s story and James’s are proof that this disease does not fit the picture most people carry in their heads.
What Is the PD-L1 Biomarker?
Your immune system is always finding and destroying cells that have gone wrong. Jane explains that some cancer cells have learned to hide:
“Some cancer cells though try to get away from the immune system and they put out this PD-L1 which says to the immune system, ‘Don’t get me, don’t get me.'”
— Jane Perlmutter
When there is a lot of PD-L1, the immune system cannot do its job. James offers an image that clicked for both of them:
“I kind of think about PD-L1 as like camouflage on the cancer.”
— James Hiter
Certain immunotherapy medicines strip away that camouflage so the immune system can find the cancer again. You may hear your care team call these checkpoint inhibitors. They are a type of immunotherapy.
Learn the basics: Get a clear, patient-friendly explanation of what PD-L1 is and how it is measured.
One Piece of a Bigger Picture: Complete Biomarker Testing
PD-L1 is one of several “locks” doctors look for. They also check for other biomarkers with names like EGFR, ALK, and ROS1. Those are changes inside the cancer cell itself. Medicines called targeted therapies can block them. PD-L1 works differently. It sits on the outside of the cell, and the medicines that treat it free up your own immune system to attack the cancer.
“If the treatment is the key, it’s got to go in the right lock.”
— James Hiter
That is why Jane tells patients to ask, right from diagnosis, whether their tissue sample got the most complete testing available. One type is called next-generation sequencing, or NGS. It is a lab test that reads many parts of the cancer’s genetic code at once, so your doctor sees the full picture instead of a few pieces. A fuller picture can reveal treatment options or clinical trials that a partial test would miss.
“So getting really to know as much about the particular cancer that you have will help doctors give you the right treatment.”
— Jane Perlmutter
Know your biomarkers: See how PD-L1 testing works alongside NGS to build a personalized treatment plan, and explore LCFA’s guide to biomarker testing.
Why It Is Worth Waiting for Your Results
Test results can take about a week. That wait is hard. James remembers wanting to “throw the kitchen sink” at his cancer right away. Both agree a short pause pays off.
“Really it’s important to push pause at the beginning and get the game plan nailed down before you just jump into treatment.”
— James Hiter
Jane adds that knowing your biomarkers helps you avoid treatments that are not a good fit. The wrong treatment can cost you time, cause side effects you did not need, and make it harder to join a clinical trial later.
Hope That Is Not False Hope
Years ago, Jane spoke to an audience made up only of family members of people who had died of lung cancer. Today she has many friends living with lung cancer and living good lives. New treatments and clinical trials keep arriving, and she and her doctor both know that tomorrow’s options may look very different from today’s.
“There’s no guarantees, but it’s not false hope either. There’s a lot out there now, and… there’s always more.”
— Jane Perlmutter
Your Score Is a Guide, Not a Guarantee
PD-L1 results are reported as a percentage, from 0% to 100%. Your report may call this a TPS score. Results are usually grouped into three ranges: high (50% or more), low (1% to 49%), and negative (less than 1%).
In general, the higher the number, the more likely immunotherapy is to help. Some people with high scores may be able to start with immunotherapy alone. That decision depends on many things and belongs to you and your doctor. Jane is clear that the number is not the whole story:
“PD-L1 is a really good indicator of how likely you are to respond, but it’s not perfect.”
— Jane Perlmutter
Her own experience proves it. Her test came back at 20%, a number many people would call low. The immunotherapy worked anyway, and her scans came back clear.
“With my lung cancer, it turned out my PD-L1 was only 20%, but I still got a total response from just… an inhibitor for PD-L1. So you just really never know.”
— Jane Perlmutter
Whether to add chemotherapy is an individual conversation. It weighs how aggressive the cancer looks against your own priorities about side effects.
Understand your score: Learn what high, low, and negative PD-L1 results usually mean for immunotherapy, and why a low score does not close the door.
Speaking Up: Questions to Ask Your Care Team
For many patients, questioning a doctor feels intimidating. Jane’s advice: write your questions down ahead of time, practice saying them out loud, and bring someone who can take notes or speak for you when emotions run high.
“No question is… foolish, and your feelings are really important.”
— Jane Perlmutter
Her must-ask questions are simple. Have I had complete biomarker testing? What do you recommend, and why? What are my other options?
She also reminds patients that nurse practitioners and the nurses who give you your treatment can be valuable sources of support. And it is okay to find a doctor who is the right fit:
“And you can fire your doctor, but the doctor can’t fire you.”
— Jane Perlmutter
If your care team is not the right fit, you can ask for a referral or look for care somewhere else.
Prepare for your next appointment: Download LCFA’s free printable guide, Questions to Ask Your Care Team about PD-L1.
Jane also encourages a second opinion, especially in less clear-cut cases. Most doctors expect this and support it.
Get another expert view: Find out how to request a second opinion.
As Jane reminds every patient she talks with: “The bottom line is ask your doctor. We’re here to help you know what to ask.”
Resources
- Biomarker Testing
- PD-L1 Testing for Lung Cancer: Understanding TPS Score
- Immunotherapy
- How to Talk to Your Doctor
- Get a Second Opinion
- Find a Clinical Trial
Medical disclaimer: Content shared in this episode reflects personal experiences and should not substitute for professional medical guidance. Please consult your healthcare provider for personalized medical advice.
