WHAT IS ALK-Positive LUNG CANCER?

Mutations that lead to ALK-positive lung cancer


ALK-positive cancer occurs in humans mostly as lung cancer, but it can also originate in many other parts of the body, including brain and breast.

ALK-positive lung cancer occurs in approximately 5% of all lung cancer patients.  However, it occurs in approximately 30% of lung cancer patients diagnosed under age 40!!  About half of ALK-positive lung cancer patients are diagnosed before the age of 50 (compared to about age 70 for lung cancer overall), with many in their 30’s and 40’s, but some even in their teens and twenties.

Discovered in 2007, “ALK-positive cancer” refers to the rearrangement of the EML4 gene and the ALK (anaplastic lymphoma kinase) gene in your DNA, resulting in a fusion oncogene EML4-ALK. An oncogene is a gene that is a mutated and may cause cancer cells. If you have cancer with an “ALK rearrangement”, part of your ALK gene is mutated, resulting in uncontrolled cell replication- cancer.

Those more likely to have ALK-POSITIVE Lung Cancer are:

Younger Women

About 50% of ALK-positive lung cancer patients are diagnosed before the age of 50.

The ALK Positive support group has many patients in their 30’s and even some in their 20’s.

ALK-positive is not thought to be a hereditary mutation like the BRCA1 and BRCA2 mutations that occur in some with breast cancer.

"Never Smokers"

ALK-positive lung cancer is strongly associated with a history of light or never smoking. Patients with this smoking history are called “never smokers.“

There is no known correlation of ALK-positive lung cancer with any environmental toxins, including smoking, second-hand smoke, asbestos, and air pollution.

ALK-positive lung cancer is caused by a rearrangement of the ALK gene, but we do not know why this rearrangement happens.

5% of Lung Cancer Cases

Lung Cancer is the most common cancer worldwide as well as the leading cause of cancer-related deaths.

About 5% of all non-small cell lung cancer patients are diagnosed ALK-positive.

ALK-positive lung cancer causes about 72,000 new cases of lung cancer, each year worldwide, and 64,000 deaths, each year worldwide.

About 90% of those diagnosed with ALK-positive cancer are diagnosed when the cancer has already spread to other parts of the body (known as metastatic cancer, or stage 4 cancer) Without any cancer treatment, half of patients with metastatic ALK cancer would die within less than 12 months, but with modern treatments that has that has increased more than six-fold, to over six years, in the last decade, and that median survival is continuing to increase as research discovers improved treatments and better medicines! 

We have every reason to be FULL OF HOPE that the future for ALK-positive cancer patients will be even brighter, and it is quite possible ALK-positive cancer will become a chronic disease, or even a curable disease, within the foreseeable future. Go Research!! Our lives depend on it!!

Read more in our blog post What Exactly is ALK Positive Lung Cancer?

 

Symptoms

Lung cancer may not show symptoms until you’ve had it long enough for it to spread to other parts of your body. It is harder to treat as it progresses, so do not delay checking in with a doctor.

If you suspect that you have any symptoms of lung cancer, like those below, see your doctor immediately:

  • Coughing up blood

  • Shortness of breath

  • A weak or tired feeling

  • Wheezing

  • A cough that doesn’t go away

  • Chest pain that gets worse with deep breathing, coughing, or laughing

  • Hoarseness

  • Weight loss without trying or loss of appetite

Many doctors, from general practitioners to specialists, are not aware of ALK-positive lung cancer and other oncogene cancers. These medical professionals may not realize that a younger patient or non-smoker could have cancer. You may have to have a discussion with your doctor about ALK-positive in order to get the tests you need. Click here to download this Into to ALK brochure to facilitate the discussion.

If you have been diagnosed with Lung Cancer

it’s likely you should get a genetic panel test done, ASAP

Diagnosis

ALK is currently diagnosed by genetic testing, known as molecular testing, of a sample. The National Comprehensive Cancer Center Network (NCCN) in the United States recommends that testing be performed via a broad, panel-based approach, typically by NGS. For patients who don’t have identifiable driver oncogenes by DNA NGS, consider RNA-based NGS to maximize detection of fusion events.

To obtain a sample, it is necessary to undergo a biopsy, typically through a needle biopsy or a small surgical procedure. We recommend going to an expert for this procedure, as it can be a challenging procedure.

Your doctor will also run tests to see how far the cancer has spread. You’ll get imaging tests to take pictures of other organs and body structures. 

Who Should Be Tested for ALK-Positive?

Several organizations worked together to develop guidelines on who should be tested for an ALK mutation. [1] The consensus was that all patients with advanced-stage adenocarcinoma should be tested for both ALK and EGFR mutations, regardless of gender, smoking history, other risk factors, and race.

Patients diagnosed with lung cancer may have to be proactive in requesting molecular testing for lung cancer mutations. Some doctors are not familiar with the necessity of the tests. Again, your doctor may not understand the likelihood that you may have an oncogene-related (dna-mutation) cancer. Many, or perhaps most, insurance companies cover these tests. Your treatment plan, and outcome, depends on an accurate diagnosis, including genetic testing.

Currently, there is no early diagnosis for ALK-positive lung cancer. Partially because ALK-positive lung cancer is a small percentage of the population, and age of onset is young, early x-ray screening is not recommended.

 

Staging/ What Does Stage IV Mean?

“Staging” is how much the cancer has grown and how far it has spread to other body parts. Knowing this helps your doctor plan your treatment options. The higher the stage number, the more the widespread your cancer is.

ALK-positive cancer patients often do not realize they have lung cancer until stage IV, when they start to show symptoms. Many patients that are diagnosed before stage IV are diagnosed accidentally, when they receive torso scans for an unrelated reason.

Stage IV is the most advanced form; meaning the disease has spread to distant parts of your body, such as your bones or brain. Stage IV is very hard to cure, if not impossible, for ALK-positive lung cancer at this time.

Life Expectancy / Prognosis

Things are looking WAY up for ALK-positive patients. Two decades ago, patients with stage 4 NSCLC had a 2% chance of achieving 5-year survival rate, according to NCI data. 

But because ALK-positive lung cancer is so responsive to TKI medications, there has been rapid increases in patient life expectancy. A study in December 2018 found that the median survival for people with stage 4 (IV) ALK-positive lung cancer was 6.8 years with the right care. That was two years ago. Importantly, because 6.8 years survival was the median, approximately 50% of patients also lived longer than 6.8 years.

The survival rate has increased since 2018 and will continue to increase. We know the survival rate will continue to increase because here at ALK Positive, we fundraise for major research initiatives- raising more than $1 million for ALK-positive research in 2019 alone. You can donate to groundbreaking ALK-positive research here.

 

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