As someone who’s been living with non-small cell lung cancer (NSCLC), there’s no doubt that you’re interested in understanding your long-term treatment plan. But how do you know what else to ask when you’ve already asked so many questions?
This doctor discussion guide will help you keep the conversation going with your healthcare team to stay well-informed about your options.
How can I tell that my current treatment isn’t working?
Your current treatment isn’t working if imaging tests or other indicators show that tumors are growing or new tumors are forming. Sometimes, treatment that had originally been working loses its effectiveness.
Your doctor can offer specifics about how your cancer is progressing on the current treatment. Once you have a clear picture of what’s happening, you can learn more about what to expect next.
Should I have more genetic testing?
Quite a few known genetic mutations can lead to NSCLC. You probably had a genetic test when you were first diagnosed. The purpose of that test was to identify mutations for which there are targeted treatments.
These drugs can be very effective against NSCLC. But even when targeted drugs work, NSCLC cells can become resistant to them over time. In some cases, that’s because the cancer develops another mutation.
For example, there are targeted therapies for the epidermal growth factor receptor (EGFR) mutation. But EGFR therapy may stop working because you’ve developed the T790M mutation, for example.
Your doctor can explain if a genetic test for additional mutations is necessary.
What other treatment options do I have and what is a realistic goal?
If your NSCLC continues to progress, your options depend on where the cancer has spread, what treatments you’ve already tried, and your expectations for a good quality of life.
Before moving on to new treatments, it’s important to talk to your doctor about your goals. Is it realistic to continue to try to cure the cancer? If not, ask which treatments can help slow disease progression and which can improve your quality of life.
Once you agree on the goal of therapy, your doctor can make some recommendations about where to go from there. Certain genetic mutations now have more than one targeted treatment, so you might be able to try a different one or a combination of treatments that target different molecular pathways in your cells.
For instance, if you have the EGFR mutation, you may have already tried one of these tyrosine kinase inhibitors (TKIs):
If you’ve since developed the T790M mutation, your doctor may want you to try a drug called osimertinib (Tagrisso). In 2017, the U.S. Food and Drug Administration (FDA) granted regular approval to osimertinib for treatment of advanced NSCLC with the T790M mutation.
Erlotinib is also an option for advanced NSCLC, even if you don’t have the EGFR mutation.
These medications can be used alone or in addition to chemotherapy.
Necitumumab (Portrazza), a type of immunotherapy, also targets EGFR and can be used along with chemotherapy.
There are many drugs that target the ALK mutation. They are also used for the ROS1 mutation. If one isn’t working, your doctor may recommend trying another. These include:
Immune checkpoint inhibitors can be used when cancer starts growing again after you’ve tried other therapies. Your doctor may also recommend different chemotherapy drugs or radiation therapy.
How would those treatments impact my life?
Quality of life is no small matter. Ask your doctor what’s involved in the therapy they recommend. How much time it will take, how often you’ll need to see the doctor, and what’s involved in monitoring the treatment all affect your life. Whatever you ultimately choose, it takes a commitment to say on track. This is why it’s worth having this discussion.
These questions should help you understand more about the pros and cons of the proposed therapy:
- What is the best we can hope for with this treatment?
- Does it require intravenous (IV) administration, or is it available in pill form?
- If it’s an infusion treatment, how long will it take and how often will I need it?
- What tests will I need to take while on this medication?
- What are the potential short-term side effects, and what can we do about them?
- What are the potential serious complications?
Do I qualify for any clinical trials and what do I need to know?
Clinical trials are carefully controlled intervention studies that serve several purposes. They allow researchers to learn more about potential new treatments. They can also give you access to experimental drugs you wouldn’t get otherwise.
Here’s what to ask about clinical trials:
- Am I eligible for any clinical trials?
- If so, what treatments are available?
- What could be different in a clinical trial from what you can do for me?
- What’s the goal of the trial?
- What are the risks to my safety and health?
- Will I need a lot of extra tests, and how much time will it involve?
- Will it be covered by my insurance?
Your doctor can help you figure out if a clinical trial is a good fit for you.
What can you tell me about palliative care?
There may come a time when you’ve either exhausted all your treatment options or the side effects are too severe. If you’re considering stopping active cancer treatment, be open about your feelings. Your doctor won’t tell you what to do. But they can give you the information you need to make that decision.
It doesn’t mean treatment has to end or you have to go it alone. You can still receive supportive care. The goal will be to maintain the best quality of life possible, for as long as possible. There’s a lot your medical team can do to help you breathe better and manage your pain and other symptoms.
Where can I find additional resources and support?
There’s a lot to consider when you’re living with NSCLC. Your doctor may not be able to answer all your questions, but they will be able to point you toward resources for:
- local organizations that provide transportation and other help
- in-home healthcare options, including hospice care
- complementary therapies
- support groups
And when a new question arises, don’t hesitate to ask your doctor.