Larry Gershon told Stephanie Watson’s
I was diagnosed with lung cancer by accident. In 2013, I went to the emergency room 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 multiple scans, surgical biopsies, and a brain MRI, I was diagnosed with stage IV lung cancer.
I can’t believe it at all. Then my oncologist said something that really lifted me up. She taught me that even though my cancer has no cure, people can live long and active lives while dealing with chronic disease. That will be our plan.
Every year, new targeted therapies are approved for the treatment of advanced lung cancer. While most of these treatments have side effects, they are usually manageable and many patients can achieve good results and lead fairly normal lives.
take the test
Hearing that you have inoperable lung cancer is tough. But hearing that nothing can be done for you is almost always untrue.
Comprehensive genomic testing is critical for every patient diagnosed with inoperable lung cancer. These tests will tell your oncologist the best treatment options for you to be successful.
My genomic testing found an EGFR mutation that was causing my cancer to grow and progress. Once the chemo stopped working, I switched to a drug that targets the EGFR mutation. I have been on the same targeted therapy for 5 years.
educate yourself
People who are educated about their disease and actively participate in its treatment do better because they can understand what is going on. I think education is an important part of tackling diseases like lung cancer. Not knowing what to expect can lead to more anxiety and stress.
Google is not your best source of information.Learn about lung cancer from your doctor, support group, or an organization like Go2 Lung Cancer Foundation. There are also lung cancer advocacy groups founded by patients that support patients with specific genomic mutations. For example, for my EGFR mutation, there is an organization called EGFR Resisters.
Other mutation types have their own support groups. These groups are in touch with pharmaceutical companies and doctors who are working on developing new treatments for each specific mutation.
take care of yourself
Over the years, I have learned that patients with advanced lung cancer who receive palliative care early do better and often live longer.
I volunteer to join GO2 The Foundation’s Phone Buddy Program, where I help other lung cancer patients understand their treatment experience. One of the biggest misconceptions I hear is that palliative care only deals with the end of life.
For people with stage IV lung cancer, it is important to understand that palliative care can help you manage the side effects of treatment. I use it for side effects like nausea, diarrhea and rashes.
Palliative care has helped me focus and be more sensible about what I eat and how I take care of myself, so I feel better overall. It can help patients and caregivers cope with anxiety, and it provides great resources when you need help. Palliative care focuses on the well-being of patients and those who support them, while your oncologist focuses on how to treat your cancer.
join support group
I also highly recommend finding a patient-centered support group. You’ll meet people who share your experiences, who share your experiences, and who can offer insight on how to deal with new experiences.
A support group is a great source of comfort. You won’t get medical advice there because that’s not the purpose, but you can learn from other people’s experiences on how to deal with treatment side effects or deal with things like anxiety.
I live in Palo Alto, CA. A friend let me know GO2 Lung Cancer Foundation (formerly 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 (physicians, researchers) from the lung cancer community to educate patients and answer their questions about lung cancer. That experience changed my life. The knowledge I gained and the camaraderie I found in this group has been one of the most comforting experiences I’ve had since being diagnosed.
know when to call
Having cancer makes you very aware of what is going on in your body. When you notice strange symptoms, you immediately wonder if your cancer is getting worse. Is there any progress? Did things go wrong?
Sometimes symptoms go unexplained. But you should definitely let your oncologist know about any new symptoms that persist for a week or more. Persistent symptoms may indicate that something is changing.
Sign up for a clinical trial
I’ve never been in a clinical trial because I’ve been lucky to be able to effectively treat my lung cancer mutation type with targeted therapy. But I would not hesitate to enroll in a clinical trial if I needed a new, not-yet-approved treatment that had the potential to help keep my lung cancer under control.
Clinical trials have provided us with very effective treatments that have helped many of us survive. There are clinical trials looking at various treatments. Treatments in clinical trials can help improve overall survival and quality of life for people with all stages of lung cancer.
participate
The bottom line is, get involved in your treatment. Be positive. Be interested in what’s going on. Ask your doctor questions and expect clear and specific answers.
I think the worst thing for anyone diagnosed with stage IV cancer is to be in the dark and not sure what’s going on. It can make you live with extreme anxiety and uncertainty.
In my 9 years with lung cancer, I have learned a lot.Go2 The Lung Cancer Foundation has educated me to be an advocate for myself and others. Without them, I think my results would have been very different.
Remember, no one cares about you more than you do. You are always your own best advocate.
