By Larry Gershon, as told to Stephanie Watson
I was diagnosed with lung cancer by accident. In 2013, I went to urgent care with cold and asthma symptoms. When the doctor took an X-ray to make sure I didn't have pneumonia, it showed a spot on my lung. After more scans, a surgical biopsy, and a brain MRI, I was diagnosed with stage IV lung cancer.
I was in total disbelief. Then my oncologist said something that really uplifted me. She told me that even though my cancer wasn't curable, people can live long and active lives while dealing with chronic illnesses. That would be our plan.
There are new targeted therapies being approved every year to treat late-stage lung cancer. While most of these treatments have side effects, they are usually controllable and many patients can enjoy good results and lead pretty normal lives.
Hearing that you have inoperable lung cancer is tough. But hearing that nothing can be done to treat you is almost always untrue.
It’s vitally important for every patient who is diagnosed with inoperable lung cancer to get comprehensive genomic testing. These tests tell your oncologist the best treatment option for you to have success.
My genomic test found an EGFR mutation that causes my cancer to grow and progress. Once chemotherapy stopped working, I switched to a drug that targeted the EGFR mutation. I've been on the same targeted therapy for 5 years.
People who are educated about their disease and actively involved in their treatment do better because they are able to understand what’s going on. I think education is a huge part of dealing with a disease like lung cancer. Not knowing what to expect can lead to a lot more anxiety and stress.
Google is not your best source for information.Learn about lung cancer from your doctor, a support group, or an organization like the Go2 Lung Cancer Foundation. There are also patient-founded lung cancer advocacy groups that support patients with specific genomic mutations. For example, there's a group called the EGFR Resisters for the EGFR mutation I have.
Other mutation types have their own support groups. These groups are in contact with the pharmaceutical companies and the doctors who are doing research to develop new treatments for each specific mutation.
Care for Yourself
Over the years, I've learned that people with late-stage lung cancer who get palliative care early have better results and tend to live longer.
I volunteer with the GO2 Foundation's Phone Buddy Program, where I help other lung cancer patients understand the treatment experience. One of the biggest misconceptions I hear is that palliative care only deals with end-of-life issues.
It's important for people with stage IV lung cancer to understand that palliative care can help you manage treatment side effects. I've used it to relieve side effects like nausea, diarrhea, and rash.
Palliative care helps me focus and be smarter about what I eat and how I take care of myself, so I feel better overall. It can help patients and caregivers deal with anxiety and provide great resources when you need help. Palliative care focuses on the well-being of the patient and those who support them while your oncologist focuses on how to treat your cancer.
Join a Support Group
I also highly recommend finding a patient-focused support group. You'll meet people who have walked in your shoes with whom you have a common experience, and people who can offer insight on how to deal with new experiences.
A support group is a great source of comfort. You don't get medical advice there because that's not the purpose, but you can learn from someone else’s experience with things such as how to deal with treatment side effects or dealing with anxiety.
I live in Palo Alto, CA. A friend made me aware of the GO2 Foundation for Lung Cancer (formerly the Bonnie J. Addario Lung Cancer Foundation). They host a lung cancer support group called “The Living Room” on the third Tuesday of every month. They invite thought leaders (doctors, researchers) in the lung cancer community to educate patients and answer their questions about lung cancer. That experience has been life-changing for me. The knowledge I’ve gained and the camaraderie I've found in this group is one of the most comforting experiences I've had since being diagnosed.
Know When to Call
Having cancer makes you hyper aware of what's going on in your body. When you notice strange symptoms, you immediately wonder whether your cancer is getting worse. Is it progressing? Are things getting bad?
Sometimes symptoms don't have an explanation. But you should definitely make your oncologist aware of any new symptom that lasts for a week or more. Symptoms that persist may indicate that something is changing.
Enroll in a Clinical Trial
I've never participated in a clinical trial because I'm fortunate to have targeted therapies that have been effective in treating my type of lung cancer mutation. But I will not hesitate to participate in a clinical trial if I need a new, not yet approved treatment that can potentially offer hope to help control my lung cancer.
Clinical trials have given us very effective treatments that are helping to keep many of us alive. There are clinical trials looking at all sorts of treatments. The treatments in a clinical trial can help improve overall survival and quality of life for people with all stages of lung cancer.
Bottom line, be involved in your treatment. Be active. Be interested in what’s going on. Ask your doctor questions and expect clear and specific answers.
I think the worst possible situation for anyone with a stage IV cancer diagnosis is to be in the dark, to be unsure of what’s going on. It causes you to live with a horrible amount of anxiety and uncertainty.
In my 9 years of living with lung cancer, I've learned a lot. The Go2 Foundation for Lung Cancer has educated me and made me an advocate for myself and others. Without them, I think my outcome would have been very different.
Remember that no one is going to care about you more than you do. You are always your own best advocate.
Photo Credit: Westend61 / Getty Images
JAMA Oncology: "Association of Early Palliative Care Use With Survival and Place of Death Among Patients With Advanced Lung Cancer Receiving Care in the Veterans Health Administration."
Larry Gershon, advocate with the GO2 Foundation for Lung Cancer, lung cancer survivor, and retired military veteran.