Making the treatment work for you
By Larry Gershon, told to Stephanie Watson
I was diagnosed with lung cancer by accident. In 2013, I went to emergency care with cold and asthma symptoms. When the doctor took an x-ray to make sure I didn’t have pneumonia, he showed a spot on my lung. After several 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 relieved me. She told me that even though my cancer was not curable, people can live long and active lives while dealing with chronic illnesses. That would be our plan.
New targeted therapies are approved every year to treat advanced lung cancer. Although most of these treatments have side effects, they are generally controllable and many patients can achieve good results and lead fairly normal lives.
Have it tested
It’s hard to learn that you have inoperable lung cancer. But hearing that nothing can be done to cure you is almost always untrue.
It is vitally important for every patient who is diagnosed with inoperable lung cancer to undergo comprehensive genomic testing. These tests tell your oncologist the best treatment option for you to be successful.
My genomic test found an EGFR mutation that is causing my cancer to grow and progress. Once the chemotherapy stopped working, I switched to a drug targeting the EGFR mutation. I have been on the same targeted therapy for 5 years.
inquire
People who are educated about their illness and actively involved in their treatment do better because they are able to understand what is going on. I think education is an important part of fighting 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 of information. Learn about lung cancer from your doctor, a support group, or an organization like Go2 Lung Cancer Foundation. There are also patient-founded lung cancer advocacy groups that support patients with specific genomic mutations. For example, there is a group called the EGFR Resisters for the EGFR mutation that I have.
Other types of mutation have their own support groups. These groups are in contact with pharmaceutical companies and doctors who are doing research to develop new treatments for each specific mutation.
Take care of yourself
Over the years, I’ve learned that people with advanced lung cancer who receive palliative care early have better outcomes and tend to live longer.
I am a volunteer at GO2 The 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 is important for people with stage IV lung cancer to understand that palliative care can help you manage the side effects of treatment. I’ve used it to relieve side effects like nausea, diarrhea, and rashes.
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 will meet people who have walked in your shoes with whom you have shared experience, and people who can offer insight into how to handle new experiences.
A support group is a great source of comfort. You don’t get medical advice there because that’s not the point, but you can learn from someone else’s experience about things like how to deal with side effects of treatment or managing anxiety.
I live in Palo Alto, California. A friend introduced me to 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 each month. They invite thought leaders (doctors, researchers) from the lung cancer community to educate patients and answer their questions about lung cancer. This experience changed my life. The knowledge I gained and the camaraderie I found in this group is one of the most heartwarming experiences I have had since my diagnosis.
Know when to call
Having cancer makes you hyper aware of what is going on in your body. When you notice strange symptoms, you immediately wonder if your cancer is getting worse. Is it progressing? Are things bad?
Sometimes the symptoms have no explanation. But you absolutely must tell your oncologist about any new symptoms that last a week or more. Symptoms that persist may indicate that something is changing.
Sign up for a clinical trial
I have never participated in a clinical trial because I am fortunate to have targeted therapies that have been effective in treating my type of lung cancer mutation. But I won’t hesitate to join a clinical trial if I need a new, as yet unapproved 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 kinds of treatments. Treatments in a clinical trial may help improve overall survival and quality of life for people with all stages of lung cancer.
To be involved
In short, participate in your treatment. To be active. Take an interest in what is happening. Ask your doctor questions and expect clear and precise answers.
I think the worst possible situation for someone with a stage IV cancer diagnosis is being in the dark, not being sure what’s going on. It makes you live with a horrible amount of anxiety and uncertainty.
In my 9 years of living with lung cancer, I have learned a lot. The green light2 Foundation for Lung Cancer educated me and made me an advocate for myself and others. Without them, I think my result would have been very different.
Remember that no one will care about you more than you do. You are still your best advocate.
