Understanding Your Lung Cancer Diagnosis
Life after a lung cancer diagnosis may feel like a blur. Some patients express feeling bombarded with so much information that they aren’t sure where or how to start navigating through the meaning and appropriate response to their diagnosis. For others the feeling is that they are not being provided the necessary information and tools to navigate their options for treatment and care.
There is hope!
Historically, a lung cancer diagnosis has been fatal. Now, however, advances in research have made tremendous inroads towards turning lung cancer into a chronic disease, much like HIV/AIDS or diabetes. There are more treatment options than ever before.
Educate yourself about your specific lung cancer.
Lung cancer takes many forms and each patient needs, and benefits from, a customized treatment plan. Also known as Personalized Medicine, this treatment plan is designed for the exact molecular features of your tumor. Matching the right treatment to the right patient is key after a lung cancer diagnosis.
Insist on Biomarker Testing.
Learning your particular biomarker is essential to determining the best treatment plan. Biomarker testing is key in today’s world of personalized medicine. Lung cancer biomarker testing, also known as genetic mutation testing, genomic testing, or next generation sequencing (NGS), looks for the mutations, or “specific biomarkers” in the cells of a tumor. These biomarkers can be used to determine the best course of treatment for a lung cancer patient.
Currently, the biomarkers that have been identified for potential targeted therapy treatments for lung cancer are: EGFR, ALK, KRAS, MET, HER2, ROS1, BRAF, RET, NTRK1, PID3CA, MED1, VEGFR2, HER3, and IGF-1R. Learn more about these biomarkers that have treatments approved by the FDA.
However, there are many more treatments that are in clinical trials. There are several biomarkers that have been identified that respond well to new therapies.
Enlist a friend or family member to accompany you to doctor visits.
There is going to be a lot of information. It’s important to have another set of ears and to keep comprehensive notes of all pertinent information and answers to questions.
If no one is available to go with you to doctor visits, consider having a friend or family member call in by phone or recording your session. Check out the FAQ section for note keeping tips and record keeping resources.
Lung Cancer Diagnosis FAQs
You should be seen by a thoracic oncologist. Thoracic oncologists have extensive training specific to lung cancer and are well versed in treatment options, medications, and clinical trials. Ideally, they will be affiliated with a Comprehensive Cancer Center which will afford them access to cutting edge treatments and the benefits of a multidisciplinary approach to treating your disease.
A good resource for finding a physician is to join a lung cancer patient group, such as Smart Patients, and ask them for references on your oncologist. There are also oncogene groups on social media that may have referrals.
It’s important to think ahead and plan for your appointment. Here are a few suggestions:
- Bring a notebook or computer. A notebook or computer to take notes about your lung cancer will prove to be invaluable.You will be given a lot of information and will have many questions. It is easy – and totally normal – to become overwhelmed. Lung cancer has a language all its own, and, unless you’ve been exposed to it, everything will be new to you. Referring back to your notes will help not only you, but your family and support system. If you are unclear on anything your oncologist tells you, ask them to explain it more clearly and/or to write it down.
- Bring a calendar. During the course of your diagnosis and treatment, you will have many appointments with doctors, surgeons, and for scans, blood tests, and other testing. It is also important that you ask your oncologists office to share this information with your primary care physician,
- Arrive prepared with questions. Remember: there is no such thing as a “dumb” question. Ask anything that you want and, if you do not understand the answer, ask the doctor to explain things more clearly.
A few questions to consider:
- What kind of lung cancer do I have: Small cell? Non small cell?
- What stage is my cancer? And what does the stage mean?
- Is there a patient portal for routine questions? If so, how do you access it?
- Is there a nurse or physician assistant to whom you can speak directly?
- What is the protocol for communicating after business hours or on the weekend?
If surgery is recommended, be sure to use a thoracic surgeon. Ask your doctor. If you are not a candidate for surgery, ask if targeted therapy or immunotherapy might be the right treatment for you.
If a treatment is recommended:
- What are possible side effects?
- Discuss your medical history and tell your doctor about any medications – both prescribed and over the counter (OTC) – that you are currently taking.
- Inquire as to whether medications are covered by insurance and, if they are not, what is the cost?
Your team of lung cancer physicians may include thoracic surgeons, medical oncologists, radiation oncologists, radiologists, and pathologists. Allowing yourself to stay organized alleviates stress.
In addition to your notebook or computer you take to your doctor appointments. Keep your own copies of medical records up to date. Always ask for a copy of each scan, test, or x-ray you may have done. This is always useful in the event that you may need to seek counsel from a different medical facility or are in fact requesting a second opinion. It’s your right as a patient to obtain such things at the time the procedure is performed.
Here are some downloadable documents that can be printed to take with you to your doctor appointments:
My Healthcare Team
Patient appointment notes
My Test Results
Lung cancer diagnosis and lung cancer treatments are increasingly complex and continue to rapidly change. Some oncologists may not be familiar with all of the most current research and available clinical trials. It is very acceptable and strongly advisable to get a second opinion.
However, if your lung cancer is making you feel very sick, you may not want to delay treatment while trying to set up this appointment. There are many cancer centers nationwide with highly trained thoracic oncologists available to render second opinions.
They will be able to talk with you about:
- standard treatment options that you may be able to receive closer to home
- recent developments in the treatment of lung cancer
- review available clinical trials.
COVID-19 changed how healthcare is delivered for people across the country, but lung cancer patients have been at the forefront of using this technology (telemedicine) to manage their diagnosis for years.
Find a Comprehensive Cancer Center designated by the National Cancer Institute.
It is very important to insist on having comprehensive genetic profiling of your lung cancer tissue. Some lung cancer patients report being told that there is no treatment option for them. If no biomarker testing has previously been done for these patients, the next step is to make sure to get the biomarker testing done, if at all possible.
First, there needs to be enough tumor tissue available for testing. A fine needle aspiration (FNA) biopsy may not provide enough tissue. A core needle biopsy is more likely to provide sufficient tissue for testing. If you had your tumor surgically removed, there likely will be enough tissue available for testing.
Secondly, you or a loved one need to advocate on your behalf and speak to your oncologist about having your tumor tested for molecular biomarkers. You may be required to undergo another procedure to obtain enough tissue. But the potential benefits of knowing the biomarker status of your tumor may, in most instances, outweigh the risks of most biopsies. New biomarkers are regularly being discovered, and targeted therapies are being developed for these biomarkers.
Therefore, in order to take advantage of emerging therapies, and to maximize your treatment options, it is suggested that you request that your doctor order your tumor be tested for a wide range of biomarkers.
A new and exciting way to identify biomarkers is through blood tests called liquid biopsies. In the past, some lung cancer patients could not take advantage of the latest discoveries in personalized medicine because there was not enough tissue to do biomarker testing. With FDA approval of the first liquid biopsy in 2016 and advances in research, specific genetic drivers, or suspected drivers, can be detected in more than half of lung cancers.
Learn more about what a liquid biopsy for lung cancer is and what uses it has.
Most people find out about clinical trials from their doctors. Many times the doctor brings up the subject of a clinical trial with the patient, but, you don’t have to wait for your doctor to begin the discussion. Thoracic oncologists are well versed in the latest research and experimental treatments. Let your doctor know that you are interested in being part of a clinical trial.
Search for Clinical Trials with Antidote Match™
Antidote Match™ connects people with medical research studies, in the fastest and easiest way possible. All you need to do is answer a few questions, and they will find the right trials for you. You gain access to the latest medical developments and world-class care.
Search for Clinical Trials at ClinicalTrials.gov
ClinicalTrials.gov is a database of privately and publicly funded clinical studies conducted around the world.