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

“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 potential approaches to your disease is crucial.

“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.

Staging can also be used to predict how cancer may progress and respond to various therapies.

“The stage is really the essence of how you determine what the correct treatment options are,” said Dr. Joseph Friedberg, chief of thoracic surgery at Temple University Health System.

Stage 1 and 2 lung cancer is considered “early-stage” disease, while stages 3 and 4 indicate that cancer has spread further into the body — and the treatment approaches will vary.

The lung cancer staging process begins once a lung cancer diagnosis is confirmed. Beyond an initial computed tomography (CT or CAT) scan, your doctor will likely order a brain magnetic resonance imaging (MRI) scan to see if there is any evidence of disease in the brain, a common area of metastasis, and a positron emission tomography (PET) scan to see whether the lung cancer has metastasized to your bones, adrenal glands, and/or liver.

TNM Classification of Tumors

The American Joint Committee on Cancer (AJCC) TNM classification system is the lung cancer staging system utilized in NSCLC. The stage of cancer is dependent on a combination of these three factors listed below.

• Tumor (T) refers to the size/shape and extent of the primary tumor’s growth, as well as its specific location. This category can be assigned a letter or number, which correlates directly to the primary tumor’s size/size and location.
• Nodes (N) refers to the involvement of lymph nodes. This category helps to determine whether the cancer has advanced to the lymphatic system.
• Metastasis (M) refers to the spread of cancer to any other organ(s).

If you want to learn more about lung cancer staging, make sure to check out SurvivorNet’s break-down of the process.

Non-small cell lung cancer

There are three general subtypes of NSCLC: squamous cell carcinoma, adenocarcinoma, and large cell carcinoma.

Adenocarcinoma, which accounts for about 40% of all NSCLC cases, is the single most common subtype of lung cancer. It is typically found along the outer perimeter of the lungs and tends to progress at a slower rate compared to other lung cancer types.

Squamous cell carcinoma typically manifests in the central portion of the lungs. Due to this central localization, symptoms are often exhibited earlier rather than later compared to other types of NSCLC.

Large cell carcinoma is the rarest main classification and accounts for about only 15% of cases.

Other less common subtypes of NSCLC include the following: carcinoid tumor, salivary gland carcinoma, pleomorphic, and carcinomas that remain unclassified.

Small cell lung cancer

SCLC makes up approximately 15% of lung cancer occurrences. Smoking tobacco is the chief risk factor for this specific kind of lung cancer.

SCLC is split into two subcategories, which include small cell carcinoma (also termed ‘oat cell cancer’), and combined small cell carcinoma, which is a mix of both small and non-small cell lung cancer. This type of lung cancer is typically characterized as evolving and metastasizing relatively quickly and aggressively.

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?”

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.

Stage one lung cancer means that your cancer is only in your lungs and has not started to spread to your lymph nodes or beyond your lungs to other organs throughout your body.

When you are diagnosed with lung cancer your medical team will conduct a series of tests to determine what stage the cancer is and how to best treat your lung cancer. The process of conducting additional tests and imaging studies is called lung cancer staging and is the backbone of what informs treatment decisions.

For individuals with stage 1 cancer who can’t have surgery because of underlying health conditions, the current standard of care is stereotactic body radiation therapy (SBRT), which directs extremely high doses of radiation to the tumor and minimizes the dose to nearby structures, reducing the risk of damage to healthy organs.

This type of treatment is becoming much more common and is being used more frequently even in patients who are healthy enough for surgery but who choose to have SBRT as a non-invasive option after an informed discussion with their treating teams.

Although surgery remains the current gold standard for treating stage 1 lung cancer, there are currently trials comparing these two approaches (surgery and SBRT) head-to-head to determine which is best for patients.

For now, surgery remains the best option, but if you or a loved one is not able to have surgery, SBRT is an excellent alternative with tumor control rates approaching those seen with surgical resection in some studies.

Stage 2 lung cancer is considered a localized disease and is primarily treated with surgery.

Dr. Geoffrey Oxnard tells Survivornet: “Surgery to remove a lobe of the lung (a lobectomy) and the affected lymph node(s) is the first-line treatment for stage 2 lung cancer. ”

In some patients who achieve a negative margin resection (no tumor left after surgery) and who have no lymph nodes involved with cancer, surgery is curative and no additional therapy or treatment is needed. This group of patients will be monitored for cancer recurrence by their oncologists but do not require additional treatment with chemotherapy, targeted agents, or immunotherapy.

When are additional treatments needed?

In some cases, chemotherapy may be recommended after surgery to lower the risk of cancer coming back or spreading. Chemotherapy given in this manner is called adjuvant and when treating lung cancer is typically a platinum agent like cisplatin.

Chemotherapy is often recommended in patients with high-risk features such as tumors greater than 4 cm, poorly differentiated, tumors that invade the visceral pleura tumors, or have vascular invasion. There are other factors your clinical team will also consider when deciding on whether chemotherapy is right for you.

In addition to chemotherapy, some patients may also be considered for other therapies — including the targeted agent osimertinib and the immunotherapy drug called atezolizumab.

Patients that underwent surgery but have residual disease left behind may also be candidate for not only chemotherapy but also radiation.

These drugs are very different from chemotherapy and are often much better tolerated. However, to receive these drugs the tumor must test positive for certain biomarkers that allow these drugs to be effective.

The treatment for stage 3 lung cancer depends on if you have stage 3A or a more advanced stage 3 cancer like stage 3B or stage 3C.

The decision to proceed with surgery for stage 3A lung cancer is not always black and white, and it’s an area where doctors can disagree. In stage 3A, where the cancer has spread to the lymph nodes on the same side of the chest where the cancer started, surgery can play a role depending on where the cancer is, how close it is to other structures, and how many lymph nodes are affected.

Chemotherapy or radiation may also be an option before surgery to shrink the tumor and destroy any errant cancer cells.

In other scenarios, some people with stage 3A cancer will be treated with radiation therapy and chemotherapy followed by immunotherapy without surgery.

If the cancer is EGFR+ targeted therapies may be added post-surgery as well. Immunotherapy drug pembrolizumab (Keytruda) may be used alone as your first treatment when your lung cancer has not spread outside your chest (stage 3) and you cannot have surgery or chemotherapy with radiation.

With stage 3B lung cancer or stage 3C, your cancer has spread to the lymph nodes on the opposite side of your chest or has invaded another area such as the veins feeding your heart.

For patients with stage 3B and 3C lung cancer, radiation therapy with chemotherapy followed by immunotherapy is the standard of care.

Most patients with stage 3 lung cancer will have radiation therapy with chemotherapy followed by immunotherapy to treat their disease. Surgery is only used for very select patients with stage 3A disease.

In stage 4 lung cancer, the disease has spread to other regions of the body, which is called metastasis.

Stage 4 is the most advanced cancer stage. Lung cancer is commonly already in stage 4 when it is first diagnosed because it often does not present symptoms until it has spread.

The National Cancer Institute estimates that about 55% of lung or bronchus cancers are first diagnosed at this stage.

Late-stage disease that has metastasized and is widespread throughout the body is often considered incurable.

In this case, the goal of treatment is to control/shrink the tumor, reduce symptoms, continue a positive quality of life, and try to prevent further metastasis and subsequent complications.

Undoubtedly, stage 4 lung cancer treatment can be difficult. This is because, by the time you have developed metastasis, your tumor will have spread beyond the lung to other parts of the body through your blood or lymph nodes and can be difficult to control.

But it’s important to know that there are still many treatment options available and treatments are improving every year. These include surgery, chemotherapy, and radiation, as well as the newer targeted drugs and immunotherapy agents.

As Dr. Raja Flores, chair of the Department of Thoracic Surgery at Mount Sinai Hospital, explains: “you have to realize stage 4, again, does not mean death. You can have stage 4 [patients] who are alive 8, 9, and 10 years later. There are people out there who are walking around who have had brain metastases, but it’s kept quiet.”

Cancerous cells can be tested for these genetic mutations using two techniques. The first is a biopsy in which a physical sample of the tumor is removed and tested.

The second method is through a liquid biopsy or blood test. Liquid biopsies are currently only used when tissue can’t be obtained from traditional biopsies.

It is critical that these genetic mutations and biomarkers are evaluated because the use of targeted therapies is possible; these medications have proven to be more effective than traditional chemotherapy and often have fewer or more tolerable side effects. They also have better side effects profiles because the tumor is specifically targeted, and healthy tissue is not damaged.

“It’s absolutely clear that every stage four patient with non-squamous, non-small cell lung cancer should have comprehensive and sensitive molecular testing done early, and with  PD-L1,” Dr. Jared Weiss, a medical oncologist specializing in lung and head and neck cancer at UNC Lineberger Comprehensive Cancer Center, tells SurvivorNet.

PD-L1 refers to an expression of a protein on cancer’s surface that it may be using to avoid detection by the immune system.

NGS has become the standard of care in lung cancer treatment. You may be a candidate for NGS testing if you have been diagnosed with:

• Advanced stage adenocarcinoma of the lung
• Advanced stage squamous cell cancer of the lung
• Advanced stage adenosquamous cancer of the lung

In early stage lung cancer, you should discuss if NGS testing could be right for you, too.

PD-L1 testing

PD-L1 testing is different from NGS Testing. It measures the level of certain proteins in cancer cells.

“It’s standard of care to get some kind of PD-L1 testing,” says Dr Weiss. “It’s really fast, it’s really cheap, it’s really easy. You can do it anywhere in the country.”

PD-L1, also know as programmed cell death 1, is a protein that is found on the outer surface of cells in your immune system. Dr Weiss also explains: “PD-L1 is not a mutation. It is an expression of a protein on the cancer surface, that it might be using to hide from the immune system”

If you were recently diagnosed with lung cancer, your oncologist should discuss PD-L1 testing with you. This laboratory test helps physicians determine whether a patient will likely benefit from immunotherapy, since a third of patients with late-stage NSCLC have high levels of PD-L1.

EGFR-mutation

• 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.
• Patients with lung cancers with EGFR mutations tend to have minimal to no smoking history.
• 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.

Many researchers believe that precision medicine, or targeted therapies, are the way forward.

Getting genetic and molecular testing is, as we said, the key first step to determining if you are eligible for a targeted therapy

Your doctor will need to figure out if you have a genetic mutation such as KRAS, ALK, or EGFR. If so, your doctor can look into whether your cancer might be treated with the growing number of medicines that more precisely target a specific mutation. Other examples of targeted therapies include MET, RET and ROS1 inhibitors.

If your cancer is over-expressing epidermal growth factor receptor (EGFR), a protein that makes cells grow and divide, drugs blocking EGFR may be used.

Targeted therapy seeks out very specific cancer cells and leaves the healthy cells alone. Chemotherapy tends to cause a lot of collateral damage because it kills all fast-growing cells — both healthy and cancerous.

Dr. Geoffrey Oxnard, a thoracic oncologist at Boston Medical Center, stressed the importance of testing tumors so that patients can have options.

“If you haven’t had testing of your tumor, you need to get your tumor figured out,” he explained.

“In doing so, that creates targeted therapy options. When I say targeted therapies, I mean patients of mine who are taking a pill once a day. Their cancers melted away. I see them every few months. They’re living fully.

“Some days, they forget they even have stage 4 lung cancer … This is what I want for my patients.

“It’s not possible for everyone, but testing is appropriate because through testing, you get options.”

Immunotherapy for Earlier Stage Lung Cancer

• For people with earlier stage lung cancer that can potentially be taken out with surgery, the FDA has approved the immunotherapy drug nivolumab (brand name Opdivo) for use with chemotherapy prior to surgery.
• This is a new sequencing of treatment for lung cancer patients for whom surgery is an option.
• Opdivo helps the body reignite it’s defense against cancer by actually blocking a part of the immune system which is preventing the body from fighting cancer. This is called check-point inhibition and it works much more effectively when a protein called PDL-1 is present in higher amounts.
• Opdivo + chemo, given before surgery, is proven in a clinical trial to reduce the risk of cancer spreading or returning by 37% compared to chemo alone.
• According to experts, it is important to ask your doctor whether this new treatment sequencing could be right for you and whether testing of your tumor from a biopsy reveals anything about the characteristics of the cancer which might help the decision making process for the use of immunotherapy.

Targeted therapy (Tagrisso) for Stage IV EGFR-positive lung cancer

• For lung cancer patients with an EGFR mutation, “TAGRISSO is the best drug in the metastatic setting,” Dr. Roy Herbst, told SurvivorNet. Dr. Herbst is a nationally recognized lung cancer researcher who serves as deputy director and chief of medical oncology at Yale Cancer Center and Smilow Cancer Hospital.
• The use of Tagrisso plus chemotherapy improved progression-free survival (PFS) by 9 months as compared to Tagrisso alone in patients with locally advanced or metastatic EGFR-mutated lung cancer. PFS means how long a patient goes after a treatment without the disease progressing or death.
• At this time the current standard of care for metastatic EGFR-mutated lung cancer is typically taking Tagrisso alone.
• If you have EGFR-mutated lung cancer and have questions regarding Tagrisso and combination chemotherapy, please don’t hesitate to talk about it with your healthcare team.

Targeted therapy (Tagrisso) for Early Stage EGFR-positive lung cancer

• Adults treated with one Tagrisso 80-mg pill once a day after surgery were 80% less likely to have their cancer come back or die compared to placebo (no active medicine).

Radiation therapy itself is painless, but some people may experience some general side effects as soon as seven to 10 days after treatment starts.

According to the American Cancer Society, these may include:

• Fatigue
• Nausea and vomiting
• Appetite loss
• Blistering or peeling skin
• Hair loss in the treatment area

These side effects can be severe if the radiation is given along with chemotherapy, but they usually go away after the treatment ends.

If the radiation is directed to the middle of the chest, your food tract, or esophagus, may become inflamed, making it difficult to swallow.

Some people may also have heartburn and trouble eating solid foods for a while.

Melissa Culligan, a thoracic surgery nurse at the University of Maryland Medical Center, says it’s important that you stay in close touch with the members of your cancer care team and notify them of any discomfort so that they can help manage these issues.

“It’s critical after surgery that you do keep active and keep your body in the best possible condition,” says thoracic surgery nurse Melissa Culligan.

She stresses how important it is to keep in close contact with the members of your care team to let them know about the severity of your pain and discomfort, as well as any anxiety and stress that you may feel.

For patients undergoing lung cancer treatment, diarrhea is one of the most common side effects of chemotherapy or immunotherapy treatments. If it’s 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.

So 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.

Dr. Ken Miller, Director of Outpatient Oncology at the University of Maryland, Greenebaum Cancer Center, has an additional four tips to help keep cancer survivors healthy. They include:

1. Exercise at least two hours a week — and walking counts.

2. Eat a low-fat diet.

3. Eat a colorful diet with lots of fruits and vegetables. The American Cancer Society recommends aiming for two to three cups of vibrant vegetables and fruits each day.

4. Maintain a healthy weight. Studies have shown that being obese can increase your risk for several types of cancer.

A lot of people dealing with pain and other side effects of cancer have already tried more traditional methods before they decide to give medical marijuana a try, according to integrative cannabis physician Dr. Junella Chin.

“When you take plant-based cannabis, marijuana, you’re decreasing inflammation, and you’re relieving pain at the same time,” Dr. Chin explained.

But how can pot do this, and why? Dr. Chin explains that humans have a natural cannabis system, or an endocannabinoid system, that our bodies create. When a person is in chronic pain though, these natural pain relievers aren’t enough.

“So when we utilize phytocannabinoids from the cannabis plant, we are actually replenishing our body’s own cannabinoid system. By doing so, it helps us deal with pain and inflammation much more effectively,” she said.