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

To help you along the way during your fight against Lung Cancer, SurvivorNet has developed a series called Living Metastatic Lung Cancer.

This series is designed to help you navigate some of the challenges that may pop up during treatment and beyond, with a specific focus on lung cancer that has an EGFR (epidermal growth factor receptor) mutation.

General Information

General information to help along the way

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.

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There are a few basic things you can do to help manage the process when you first learn of your cancer diagnosis.

Dr. Heather Yeo, a colorectal surgeon at Weill Cornell and an advisor to SurvivorNet, shared the following tips that are helpful for people facing cancer across the board:

  • Have someone come with you to the doctor — It is important to bring a close friend or family member not only to support you, but also to help you understand and digest all the information.
  • Take notes — Writing down what you hear can help you focus and create a record of the information so you can refer to it later on.
  • Don’t be afraid to get a second opinion — Your doctor won’t be offended if you get a second opinion. It is extremely important to go through the process with a doctor you trust — and make sure you’re getting the best care possible with a doctor you feel comfortable with.

When to consider a second opinion

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“What would you do if someone in your family got cancer?” We put that question to some of the most renowned cancer doctors in the country. National Cancer Institute Chief of Surgery Dr. Steven Rosenberg recommends seeking out multiple professional opinions to confirm a diagnosis and figure out the options.

Patients should not feel guilty about doing this — as many doctors will recommend and even encourage it.

As we highlight in several areas of SurvivorNet, highly respected doctors sometimes disagree on the right course of treatment, and advances in genetics and immunotherapy are creating new options.

Also, in some instances the specific course of treatment is not clear cut. That’s even more reason why understanding the different potential approaches to your disease is crucial.

Learning to live with uncertainties

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.

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“What the task becomes is having the courage to live in the face of uncertainty, realizing that you cannot necessarily control the uncertainty in life … the suffering that occurs, challenges both good and bad,” Dr. Breitbart said.

“You may not be able to control those but you have control over how you choose to respond.”

Those struggling with feelings of loss of control that cancer can bring can seek help in many different ways — from traditional therapy to support groups for people living with cancer to making lifestyle adjustments to help cope with stress.

My Lung Cancer Type

Understanding your type of lung cancer

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.

Assembling Your Team

Assembling your treatment team

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.

What sort of specialists will I need to see?

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.

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Not everybody can get to a designated comprehensive cancer center, but the data is clear that these centers are extremely helpful, especially when your disease is complex.

There are plenty of excellent physicians who are not at comprehensive cancer centers. That being said, when you are looking into care, you should be asking, “Am I getting doctors with different specialties like medical oncology, radiation oncology, surgery, pathology and radiology?”

However, it is important to keep in mind that with metastatic disease, surgery is often not an option.

The really important thing is that you’ve got the right people and that they know the latest science.

That can happen away from a major cancer center, or it can happen at one. In order to get the best guidance, you will need to sift through the options in your area — and consider if you need to travel to a larger medical center.

The EGFR Mutation

Understanding DNA mutations: What does EGFR mean?

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.

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The following are the most common mutations that have FDA-approved targeted treatment options already:

  • EGFR
  • ALK
  • ROS1
  • BRAF
  • KRAS
  • MET
  • HER2
  • RET
  • NTRK

Mutations that matter when treating lung cancer

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.

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There are various types of EGFR mutations. Think of mutations like typos in DNA; there can be missing or added words (deletions or insertions), or the DNA can be misspelled at certain points (point mutations).

Your test results might show an EGFR 19 deletion or an EGFR L858R point mutation, which are the most common types we know of. This information helps doctors pinpoint where the mistake is in the DNA. EGFR 19 deletions and EGFR L858R point mutations are usually treated the same way.

In lung cancer testing for EGFR mutations, there are some rare types that need different treatment than the more common ones. A significant example in lung cancer is EGFR exon 20 insertions. This type of EGFR mutation doesn’t respond to the usual treatment for EGFR-positive lung cancer, which is called tyrosine kinase inhibitors (TKIs). This particular group of patients may be treated with a Amivantamab (Rybrevant), a bispecific antibody to EGFR and mesenchymal-epithelial transition receptor (METR), in combination with chemotherapy.

Is EGFR-mutated lung cancer common?

The rate of EGFR-mutated lung cancer can vary depending on the population, but it typically comprises around 15% of North American and European patients. It can be almost 50% in Asian populations.

This mutation is more common in the following lung cancer patients:

  • Those with the adenocarcinoma subtype of non-small cell lung cancer
  • Those with minimal to no smoking history
  • Women
  • Young adults
  • People of Asian or East Asian heritage

Molecular Testing

Molecular profiling for lung cancer 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.

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This means that many lung cancer patients won’t have to deal with the harmful effects of chemotherapy, like side effects and toxicity, because they’ll receive treatments that are finely tuned to their individual needs.

“I could not be more excited about targeted therapy. We’re discovering more and more targets and more known targets are becoming actionable,” Dr. Jared Weiss, a medical oncologist specializing in lung and head and neck cancer at UNC Lineberger Comprehensive Cancer Center, tells SurvivorNet.

How can molecular testing help with treatment decisions?

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.

Who should get tested?

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In metastatic (advanced) disease, next generation sequencing is also performed — and it looks a multitude of potential DNA mutations that could be targeted by systemic therapy.

Sometimes multiple molecular tests can be run in patients with metastatic disease to test for development of new mutations when the disease has progressed or stopped responding to the current systemic therapy. In this case, liquid biopsy can be used to reduce morbidity of repeat tissue biopsy.

The benefits of targeted therapies

Treatment Options

Understanding treatment options

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 metastatic disease

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.

Tagrisso for EGFR-mutated metastatic lung cancer

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Dr. Roy Herbst, a nationally recognized lung cancer researcher who serves as deputy director and chief of medical oncology at Yale Cancer Center and Smilow Cancer Hospital, told SurvivorNet that he believes Tagrisso is “the best drug in the metastatic setting” available for patients with the EGFR mutation at this time.

He commented on recent results from a clinical trial that showed improved progression-free survival of 9 months in patients with locally advanced and metastatic EGFR-mutated lung cancer, when using Tagrisso in combination with chemotherapy versus using Tagrisso alone.

“The time of progression is longer and the primary endpoint of the trial was met” he acknowledged. With that being said, he remains skeptical about whether the combination therapy will have a long-term benefit on this patient population. In baseball terms he says: “I think it’s a single or a double. It’s not a home run at all.”

Below are the available treatments for EGFR-positive lung cancer patients.

Tyrosine Kinase Inhibitors (TKIs)

  • Afatinib (approved for stage 4 lung cancer)
  • Dacomitinib (approved for stage 4 lung cancer)
  • Erlotinib (approved for stage 4 lung cancer)
  • Gefitinib (approved for stage 4 lung cancer)
  • Osimertinib (approved for stage 1-4 lung cancer)

Side Effects

Managing side effects

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.

EGFR Inhibitor side effects

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For patients undergoing lung cancer treatment with a tyrosine kinase inhibitor such as Tagrisso, there are several side effects that patients should be aware of.

The most common include:

  • Diarrhea
  • Rashes
  • Stomatitis (inflammation inside the mouth)
  • Nausea
  • Dry skin
  • Low blood counts.

If any of these side effects are severe, it can affect your continued treatment.

It’s important to be very detailed in the description of your condition when you contact your care team, says thoracic surgery nurse Melissa Culligan.

What can you do to manage it?

Doctors often recommend drinking more water, clear broth or  decaffeinated fluids to replace the fluids and electrolytes you lose — and to avoid certain foods that trigger or worsen diarrhea like milk, spicy, or fatty foods.

Other suggested recommendations include eating low-fiber foods, trying probiotics, and eating five to six small meals a day.

Living With Cancer

Diet, exercise & lifestyle

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.

An expert's golden rules for living with cancer

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Based on years of experience, Dr. Geoffrey Oxnard, a thoracic oncologist at Boston Medical Center, says he has a simple set of rules he tells his patients to help them cope.

  • Don’t act sick — Just because you have cancer doesn’t mean that you have to stop doing the things that you enjoy. Stay active.
  • Don’t lose weight — Cancer can eat away at your physical reserves, so it’s important that you top them up with the calories and nutrients you need to fight the disease.
  • Don’t be a tough guy — When you have cancer, things like diarrhea or tingling nerves can be a sign that the dose or frequency of your treatment needs to be adjusted. Speak up and let the members of your care team know so that they can help.

Ultimately, dealing with your cancer treatment means staying positive, having full communication with those who can help and support you, and remembering that your life went on before your diagnosis and will continue after it. There’s no reason why it shouldn’t go on as you adjust to a new normal.

And yes, you have the strength!

4 Simple Tips to Maintain a Healthy Lifestyle

More Resources

Living with lung cancer

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!

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