Non-Smokers Can Get Lung Cancer, Too
- Amal Moussa, a Seattle architect, was diagnosed at 31 with a rare stage 3 lung neuroendocrine tumor after experiencing unusual fatigue and a burning sensation while breathing. She underwent surgery followed by six weeks of proton therapy after seeking a second opinion, completing treatment just before turning 32.
- In the US about 10% to 20% of lung cancers occur in non-smokers, according to the CDC.
- According to the American Cancer Center, neuroendocrine tumors (NETs) account for about 1% to 2% of all lung cancers, which adds up to an estimated 2,000 to 4,500 new lung NET diagnoses each year in the United States. Additionally, Neuroendocrine tumors (NETs) are most frequently found in the digestive system rather than the lungs, with only about one in five cases originating in the lungs.
- Meanwhile, there are two main types of lung cancer, which doctors group together based on how they act and how they’re treated: Non-small cell lung cancer (NSCLC) is the most common type and makes up about 85% of cases. Small cell lung cancer (SCLC) is less common, but it tends to grow faster than NSCLC and is treated very differently.
- Treating lung cancer depends on the cancer’s location and how advanced it is. Treatment options include surgery, chemotherapy, radiation therapy, targeted therapy, or a combination of any of these treatments.
- For help finding a clinical trial that’s right for you, try our easy-to-use Clinical Trial Finder.
Moussa, who grew up in Cairo, Egypt, and studied at the University of Washington, has since undergone surgery and proton therapy for a stage 3 lung neuroendocrine tumor (NET). She’s now sharing her story with Fred Hutch Cancer Center, in hopes of spreading awareness.
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Reflecting on the early symptoms she experienced last year, Moussa told Fred Hutch Cancer Center that she first went to urgent care, suspecting pneumonia because of unusual fatigue and a burning sensation while breathing.
A chest X-ray later showed she did not have pneumonia and suggested she may have had the flu instead, so she was discharged with medication. However, after doctors took a better look at her X-rays they encouraged her to visit an emergency room.
It wasn’t until she had a CT scan at the hospital that a tumor was found in her right lung, and spread to some of her lymph nodes.
Moussa said the diagnosis was a total shock, as she considered herself healthy, exercised regularly, and had never smoked.
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Moussa’s doctor, Dr. Keith Eaton, told Fred Hutch Cancer Center that her specific type of cancer is often more difficult to treat than other forms of lung cancer, saying, “Due to the rarity of this disease, treatment protocols are not as established compared to typical non-small cell lung cancer.”
After initially being advised to undergo chemotherapy and radiation, Moussa sought a second opinion at the Mayo Clinic in Minnesota.
“They recommended surgery followed by proton therapy,” she said, adding that she stayed in close contact with Dr. Eaton throughout the process. Surgeons ultimately removed two of the three lobes in her right lung, along with several lymph nodes.
Moussa underwent six weeks of proton therapy and completed treatment just before turning 32.
How Likely Is It That My Lung Cancer Will Return?
Since completing treatment, she has returned to her job.
Additionally, Moussa says she’s learning to live with limited lung function and occasional breathlessness, but emphasizes, “I’m just glad to be here.”
Understanding Neuroendocrine Tumor (NET)
Neuroendocrine tumors (also called carcinoid tumors) are rare, affecting “4 in 100,000 adults,” the CDC says.
NET symptoms largely depend on where the tumor is located. People with a neuroendocrine tumor in the digestive tract may experience abdominal pain, diarrhea, nausea, or vomiting. If the neuroendocrine tumor is in the lungs, patients may have difficulty breathing, experience chest pain, wheezing, or cough up blood.
To confirm a neuroendocrine tumor diagnosis, your doctor may ask you to undergo urine or blood tests that can help check your hormone levels. CT and MRI scans can also reveal a tumor. Once a tumor is discovered, a biopsy can also confirm specific tumor details.
Treatment options may include chemotherapy, targeted therapy, and surgery to remove the tumor. Somatostatin analogs can be used to mitigate hormone production and slow tumor growth.
Smoking and Cancer Risk
Lung cancer is the leading cause of cancer deaths for men and women in the United States. Nonsmokers still get lung cancer, but cigarette smoking is the number one risk factor for the disease. Tobacco smoke contains a mixture of more than 7,000 different chemicals, at least 70 of which are known to cause cancer, the Centers for Disease Control and Prevention (CDC) says.
The CDC says cigarette smoking is linked to about 80 to 90 percent of lung cancer deaths, and people who smoke cigarettes are 15 to 30 times more likely to get lung cancer or die from lung cancer than people who don’t smoke. Additionally, secondhand smoke can cause lung cancer.
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Smoking is, of course, the primary cause of lung cancer, but nonsmokers can and do develop this disease. Researchers have made progress in understanding the differences between lung cancer in smokers versus nonsmokers, says Dr. Ronald Natale, a medical oncologist at Cedars-Sinai Medical Center, and they’re developing targeted treatments that will be able to address the genetic drivers of lung cancer in nonsmokers.
“Among patients who are nonsmokers, or former very light smokers, we identify a mutation that we can target with pills in about 60% to 70% of them. That leaves 30% or so, 40%, in whom we either have a target for which we do not have a successful treatment,” Dr. Ronald Natale, a medical oncologist at Cedars-Sinai Medical Center, tells SurvivorNet.
“Among patients who are smokers, who have more complex cancers that have hundreds, sometimes thousands of mutations, don’t have a driver mutation that we can give a pill for, which is only a tiny percentage of lifelong smokers. Chemotherapy is the primary treatment in most patients,” Dr. Natale explains further.
WATCH: Does smoking marijuana pose health risks?
New research published in Cancer Journal for Clinicians suggests that although the number of cancer cases is expected to rise, by eliminating tobacco use, millions could significantly reduce their cancer risks.
According to researchers, the number of annual cancer diagnoses will jump from roughly 20 million today to 35 million by 2050. The figure puts added pressure on cancer awareness advocates and healthcare practitioners because some of these cancer cases are preventable, according to experts.
“[Eliminating] tobacco use alone could prevent 1 in 4 cancer deaths or approximately 2.6 million cancer deaths annually,” said Dr. Ahmedin Jemal, senior vice president of surveillance & health equity science at the American Cancer Society and senior author of the study.
Tobacco, more specifically smoking cigarettes, is a significant risk factor for lung cancer, which is “the most commonly diagnosed cancer and leading cause of cancer death overall and in men worldwide,” the American Cancer Society says.
Understanding Lung Cancer and Why It’s Hard to Catch Early
Lung cancer forms when cancer cells develop in the tissues of the lung. It is the second most common form of cancer and the leading cause of cancer deaths in both men and women in the U.S., SurvivorNet experts say. It’s “completely asymptomatic,” says thoracic surgeon-in-chief at Temple University Health System Dr. Joseph Friedberg.
“It causes no issues until it has spread somewhere. So, if it spreads to the bones, it may cause pain. If it spreads to the brain, it may cause something not subtle, like a seizure,” Dr. Friedberg adds.
WATCH: Detecting lung cancer in the absence of symptoms.
Scans such as X-rays can help doctors determine if a shadow appears, which can prompt further testing for lung cancer.
Lung cancer often doesn’t cause symptoms until it has already spread outside the lungs, according to SurvivorNet’s experts.
There are two main types of lung cancer, which doctors group together based on how they act and how they’re treated:
Non-small cell lung cancer (NSCLC) is the most common type and makes up about 85% of cases.
Small cell lung cancer (SCLC) is less common, but it tends to grow faster than NSCLC and is treated very differently.
Some people with lung cancer may experience symptoms such as:
- A cough that doesn’t go away, that gets worse, or that brings up bloody phlegm
- Shortness of breath
- Fatigue
- Chest pain
- Hoarse voice
- Appetite loss
- Weight loss
If you are experiencing these kinds of symptoms consistently, contact your doctor for further tests.
Advancements In Lung Cancer Treatment
Lung cancer treatment is still evolving, offering the promise of hope for people living with this type of cancer. Research presented at the 2024 American Society of Clinical Oncology (ASCO) showed that (generic name: durvalumab) (brand name: Imfinzi), a type of immunotherapy drug, could reduce the risk of death for patients with limited-stage small cell lung cancer (LS-SCLC) by 27 percent.
The study demonstrated that the use of Imfinzi improved overall survival and progression-free survival (the time a patient lives without their disease getting worse) in patients.
“SCLC is one of the most aggressive types of lung cancer. The ADRIATIC trial is a landmark study and provides a new standard of care with the addition of immunotherapy for patients with early-stage SCLC who are being treated with the goal of curing their cancer,” said Dr. Lauren Byers, thoracic section chief in the Department of Thoracic-Head & Neck Medical Oncology at the University of Texas MD Anderson Cancer Center in Houston.
Dr. Byers pointed out that Imfinzi helped patients live for years compared to many other treatment approaches, where the benefits were measured in months.
WATCH: Understanding Immunotherapy in Lung Cancer.
Another treatment option that has shown great promise is the drug Rybrevant, which is approved by the U.S. Food and Drug Administration for non-small lung cancer (NSCLC) and has a specific genetic mutation your doctor can identify through testing.
“When a patient comes in, we immediately sequence the tumor. We are doing panels that might include three, four, or 500 genes, the ones that are most likely. Some sort of next-generation approach is the best standard of care these days – it has to be done,” Dr. Herbst explains.
The active ingredient in Rybrevant is amivantamab-vmjw. It belongs to a class of drugs known as biologics, which are made from living cells.
The drug works like a guided missile, finding and sticking to the bad cancer cells. It targets and attaches to two specific proteins in cancer cells, disrupting their growth signals and activating the immune system to fight the cancer.
Once it finds its target, it blocks the signals the cells need to grow and spread. This stops the cancer from worsening and helps patients feel better for longer.
Rybrevant is different from older cancer treatments because it is a targeted drug therapy. It doesn’t just attack all rapidly dividing cells like traditional chemotherapy does. Instead, it goes after the cancer cells with the mutation it was designed to treat while avoiding the healthy surrounding cells. This means it can be more effective and might have fewer side effects than other treatments.
WATCH: Imfinzi offering hope to patients.
Lorlatinib and crizotinib are other lung cancer treatments known as tyrosine kinase inhibitors. These drugs target ALK, a signaling protein inappropriately present in the tumors of about five percent of patients with NCSLC.
“It is encouraging that the upfront benefits of lorlatinib over crizotinib continue for several years in more than half the patients. It is also encouraging that patients receiving lorlatinib had much fewer incidences of brain metastasis, which can be devastating,” Dr. Leslie Busby, an oncologist at Rocky Mountain Cancer Centers, told SurvivorNet.
Five-year PFS, or the percentage of patients who lived five years without any evidence of cancer growth or death, was 60% among patients who received lorlatinib compared to only 8% among patients who received crizotinib—an absolute difference greater than 50%.
Advocating for Your Health
Patients advocating for their health can lead to better patient outcomes. Moussa’s desire to act on her unusual symptoms and seek out an urgent care is an example of advocating for your health.
Sometimes, people dealing with lingering symptoms may act on the anomaly, but their doctor may be dismissive. In cases such as this, seeking another medical professional to give you an opinion is especially important to avoid being misdiagnosed.
WATCH: Why a Second Opinion Matters
RELATED: Second (& Third) Opinions Matter When Deciding Between Surgery or Radiation
Regarding seeking another perspective, getting a second or third option has proven extremely helpful for cancer patients. Dr. Steven Rosenberg, the National Cancer Institute Chief of Surgery, says that not all doctors are up-to-date on or agree on treatments. Hearing from different doctors broadens your options.
“If I had any advice for you following a cancer diagnosis, it would be, first, to seek out multiple opinions as to the best care,” National Cancer Institute Chief of Surgery Dr. Steven Rosenberg told SurvivorNet in a previous interview. “Because finding a doctor up to the latest information is important.”
Contributing: SurvivorNet Staff
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