Living with Metastatic Lung Cancer
Resources, expertise, and survivor support to help in the months & years after diagnosis

We know that you’ve likely already made many tough decisions and are preparing to begin the next step in your journey, which may be treatment or simply adjusting to a new normal.

While you let the medical information set in, you may find yourself second-guessing decisions. This is common and experienced by many people going through this process. Here, we cover some often-overlooked topics after a cancer diagnosis — including how to approach treatment, why you may want to consider a second opinion, and coping with the range of emotions you may be feeling.

While life is filled with uncertainties, people living with cancer may feel this at a more extreme level.

Dr. William Breitbart, the chair of the Department of Psychology and Behavioral Sciences at Memorial Sloan Kettering Cancer Center, explained that learning to embrace that uncertainty is a part of living not just for those fighting cancer, but for everyone.

Lung cancer, like all cancers, comes in many different forms.

One key distinction is whether your cancer is non-small cell lung cancer (NSCLC) or small cell lung cancer (SCLC). The large majority of lung cancers — about 85% — are NSCLC, while only about 15% are SCLC.

Because it is significantly more common, this guide will focus mostly on NSCLC.

Since you are reading this guide, you have likely already been told that your cancer is EGFR-mutated and metastatic.

The EGFR (epidermal growth factor receptor) is a protein in cells that helps them grow. If there’s a mistake in the gene for EGFR, it can make it grow too much, leading to cancer.

Metastatic cancer means that the disease has spread to distant parts of the body. We understand this diagnosis can be really intimidating, but treatment options are ever-evolving.

The process of finding the right doctor and deciding where to get treatment can be stressful in itself.

When faced with something as life-changing as a cancer diagnosis, it can be easy to overlook some options. For lung cancer, multidisciplinary centers are a great option because they offer patients the opportunity to work with multiple specialists all in one place.

Regardless of where you begin your treatment process, there may be several specialists involved in your treatment team.

It’s often a pulmonologist or lung specialist who makes the initial lung cancer diagnosis by evaluating symptoms, such as coughing and shortness of breath, and analyzing a subsequent lung biopsy.

The next step is typically a meeting with a medical oncologist and/or several other specialists to determine the stage and extent of the cancer.

This important process may include scans of the chest, abdomen, pelvis and brain to see if the cancer has started to spread outside of the lung. In addition, pulmonary function testing may be performed to get a baseline of your lung reserve and suitability for surgery. The results will guide treatment decisions.

Since you are facing metastatic cancer, or cancer that has spread, the approach to creating a treatment team may be slightly different than it would for someone with earlier stage disease.

DNA is the genetic code of your cell, or the blueprint. Everything your cells make to keep them alive and functioning is all stored in the DNA. Normally, there are checkpoints and safeguards in your cells that identify changes in the DNA in order to correct them. This can be through either fixing the DNA change or mutation itself, or killing the cell if the DNA change or damage is too difficult to fix.

When enough of certain parts of the DNA are mutated and not fixed by your cells’ protective mechanisms, this can result in unregulated growth and division of the cells which can result in cancer.

There are some drugs available that can target these specific DNA mutations — or medications that doctors know are very effective against these changes. Just as cancers that arise in various parts of the body are different, common DNA mutations that cause these cancers can also be different, resulting in different medications to target these DNA mutations.

The EGFR (epidermal growth factor receptor) is a protein in cells that helps them grow. If there’s a mistake in the gene for EGFR, it can make it grow too much, leading to cancer.

EGFR is like a switch on the cell that when activated tells the cell to grow. When EGFR mutates it is constantly turned on, which means the cell grows too much. This can result in cancer growth.

If your lung cancer has a mutation in EGFR, it is called an EGFR-mutated lung cancer or EGFR-positive lung cancer, which is a specific subtype. This can affect treatment options and also tells us how the cancer typically behaves.

There are several types of EGFR mutations and they do tend to be more common in specific subsets of patients.

Next-generation sequencing (NGS) is a special test that looks at a specific set of genes related to lung cancer. This advanced technology helps your doctor create treatment plans that are specifically designed for you based on your genetic information.

It’s like getting a personalized roadmap for your cancer treatment — what experts call “precision medicine.”

Thanks to NGS testing, more people with lung cancer can now avoid unnecessary chemotherapy. Imagine it as a smart test that checks if you really need chemotherapy or if there’s a better option.

Dr. Weiss explained to SurvivorNet when molecular testing would be relevant.

“If I meet a patient for the first time and they haven’t yet had this testing [which I think is the case in most places in the country, where the medical oncologist meets the patient and nothing’s been ordered], I’d have the conversation in the plainest English that I can muster, about why it matters.

“And then I will talk to the pathologist and see if we have tissue left [from a previous biopsy or surgery], because nobody wants another needle stuck into them. If there’s adequate tissue remaining, it’s just an order, right?  I sign an order, the tissue goes off, and we test the tissue for these changes.”

With metastatic disease, the results from molecular testing can be particularly important.

When lung cancer has progressed to stage 4, or metastatic disease, the goal of therapy is to treat the entire body to destroy as much cancer as possible.

In the past, chemotherapy was considered the treatment standard for stage 4 lung cancer, but times have changed. More new and innovative types of treatment are available for stage 4 lung cancer today than ever before.

While surgery may not be an option at this stage, your treatment plan may include:

• Chemotherapy
• Radiation
• Immunotherapy
• Targeted therapy

New research indicates that combining a targeted therapy called Tagrisso (osemirtinib) with chemotherapy may extend progression free survival (the amount of time a patient lives without their cancer getting any worse) for people with EGFR-mutated advanced lung cancer.

However, the specific treatment recommended to each patient will depend on several factors including stage, tumor location, and overall health.

Understanding if you have EGFR-positive lung cancer is most crucial for stage 4 patients.

Typically, those at this stage will be prescribed a pill known as an EGFR targeted tyrosine kinase inhibitor (TKI) or EGFR-inhibitor initially.

The choice of a specific EGFR inhibitor depends on your oncologist’s preference, the type of lung cancer you have, and your treatment goals.

Discuss the advantages and disadvantages of each option with your doctor. Generally, based on studies showing that Tagrisso is better tolerated and more effective than other EGFR inhibitors (erlotinib, gefitinib), most patients will receive osimertinib as their first EGFR inhibitor.

Cancer treatment affects everyone differently. Some will experience little to no side effects while others may need additional medical intervention to curb side effects.

It’s critically important to keep your medical team in the loop about any side effects you begin to feel right away so adjustments can be made if they’re needed.

Living with cancer can certainly manifest a mix of emotions and obstacles.

Perhaps one of the biggest obstacles you’ll have to deal with is cancer treatment and learning to cope with a new normal, as well as potential side effects. While everyone has their own journey with cancer treatment, experts have some golden rules to follow that are effective in getting through it.

We hope that you were able to find some helpful information and some of the support you are looking for as you embark on your journey as a cancer survivor.

Be sure to check out SurvivorNet’s designated Lung Cancer section for a breakdown of the basics of the disease, treatment options, and what you can expect as a survivor.

We also provide regular updates on any new treatment options and inspiring stories from survivors like you.

At SurvivorNet, we’re here to help survivors navigate the complex world of living with cancer. Thank you for being part of the family!