Just Diagnosed With ALK+ Lung Cancer

What You Need to Know

You, or someone you love, just found out you have ALK+ NSCLC. You are not alone. Sometimes getting more information can help make the diagnosis less of a mystery and easier to deal with. Learn more about ALK+ NSCLC here.

In the past decade, there have been several advancements in the treatment of ALK+ lung cancer. This has opened the door for new options that are changing the way this type of cancer is diagnosed and treated. While there is currently still no cure, new treatment options are available, including treatments that target the ALK gene mutation. Treatments such as these may help shrink or slow the growth of your tumors.

"I had no idea I had it until I could not walk up the steps at the theater as quickly as I used to. I knew something was wrong because I wasn’t breathing right."

Patient with ALK+ NSCLC

Who Is in Your Corner?

If you have a strong support system, lean on them and know they are there to help. If you don’t yet have a strong support system, and you want one, support groups and advocacy groups are a good place to start. Find advocacy groups for people with ALK+ NSCLC here.

Your support group could consist of:

  • Care Team Care Team Health Care Team
    (eg, oncologist, general practitioner, surgeon, pathologist, nurse, office staff)
  • Caregivers Caregivers Caregivers
    (eg, family, friends, loved ones)
  • Support groups Support groups Patient Education and Support Organizations
    (eg, advocacy groups, local patient groups)
 

Asking for help is a sign of strength. You are not alone.

Working With Your Health Care Team

You may have a Health Care Team that will help you through the different stages of your treatment plan.
Some will work more closely with you than others, but they are all focused on helping you. They may include:
 

  • Oncologists
  • Nurses
  • General practitioners
  • Pharmacists
  • Surgeons, interventional radiologists , and pulmonologists
  • Social workers
  • Pathologists
  • Office staff
A medical doctor who treats cancer. +
A doctor who uses radiology to find and treat disease. +
A doctor who specializes in lung disease. +
A doctor who specializes in diagnosing diseases by looking at cells and tissues under a microscope. +

When Speaking With Your Health Care Team, Be Your Own Advocate

It is also helpful to have a caregiver with you to help ask questions and as another set of ears as you learn new information.

  • Discuss all your treatment options
  • Learn about what to expect from treatment
  • Ask as many questions as you want. Do not worry if your questions seem silly
  • Take someone with you when visiting your doctor, if you can
  • Prepare questions ahead of time and take notes during your conversations
  • Download this brochure for more tips on talking to your team

Always be open with your Health Care Team and ask any questions you have.

You may learn about and discuss both your short-term and long-term goals.

Treatment Options

Your oncologist, along with the rest of your Health Care Team, will help you choose the most appropriate treatment option. They will review your medical history and evaluate your lifestyle and preferences for treatment. While there is no cure, newer treatments, such as targeted therapies, may help more people with ALK+ NSCLC respond to treatment. These treatments may also lengthen the time that a person can live without their disease getting worse.

It is important to understand the different types of treatment options.

  • Targeted therapies can inhibit or slow the disease growth, progression, and spread of cancer by targeting specific molecules that are responsible for cancer cell growth.
  • Chemotherapy works to stop cancer cells from growing and dividing. In the process, it can cause damage to some healthy cells. Chemotherapy is not a preferred treatment choice for patients with ALK+ NSCLC, although it is still an option under certain conditions.
  • Immunotherapy alerts the body’s immune system about cancer cells and triggers the body to destroy them. Immunotherapy is not recommended as a treatment option for people with ALK+ NSCLC.
  • Radiation or surgery may also be used to remove or shrink your tumor(s), depending on your Health Care Team's plan.

Remember, you are an important part of your own treatment decision. You have the right to ask about other alternatives. You also may find it helpful and should feel comfortable seeking out a second opinion. Work with your Health Care Team to learn about all of your options.

  • Ask questions to understand the plan that your Health Care Team has recommended
  • Feel free to speak up if anything is unclear or you have any concerns

Another thing to consider is how your treatment is given. You can get treatment primarily in two ways: orally, as in taking a pill or capsule by mouth, or by IV infusions. Work with your team to determine the best option for you.

Actively learning more about the disease and treatments can help you every step of the way.

Be Good to Yourself

It's important to take care of yourself–physically and emotionally–during this time. Acknowledge how you feel, talk to your Caregivers and support groups, and even seek therapy if you think it will make you feel better. Many hospitals offer therapy as part of a treatment plan, so find out if yours does.

Creating a healthy lifestyle may make a big difference in your overall health during treatment. Remember to always talk with your Health Care Team before starting any new exercise program, or altering your lifestyle or diet.

Part of taking care of yourself is being aware of the symptoms your disease or treatment may cause. Some symptoms could consist of, but are not limited to: fatigue, shortness of breath, cough, pain in the chest, loss of appetite, frequent respiratory infection, swollen lymph nodes, hoarseness, wheezing, weight loss, coughing up phlegm or mucus, headaches, or bone or joint pain.

Let your Health Care Team know if your symptoms get worse or you suddenly have new symptoms. Your Health Care Team will try to help manage these symptoms.

Achieve a Healthier Lifestyle

Talk to your doctor about using these strategies for better health:

  • Eat well: What we put in our bodies can affect how we feel.
  • Be active: It may sound strange, but being active can play a direct role in actually reducing fatigue. It also helps to improve mood.
  • Mental well-being: A cancer diagnosis and treatment can be stressful. Try relaxing activities, such as slow, rhythmic breathing and yoga.
  • No smoking/drinking: We all know that smoking and drinking are not good for us. But especially now, as you begin treatment, it’s important not to start or continue these unhealthy habits.
Sources: Johns Hopkins University website and García-Lavandeira JA, Ruano-Ravina A, Barros-Dios JM. Gac Sanit. 2016;30(4):311-317.

And Something for
Your Caregivers…

You can lean on your support system—don’t feel like you are a burden.
Share this with your Caregiver so he or she can learn how to provide the support you need and deserve.

 
 

You are now leaving Living With ALK.

This link will take you to ALKConnect.com, a patient registry designed for patients with anaplastic lymphoma kinase-positive (ALK+) non-small cell lung cancer (NSCLC).

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