The journey to being diagnosed with lung cancer is often life-changing, and emotional distress is common. Understanding the various steps and procedures can help you feel more in control, and get you prepared to advocate for yourself during your treatment.
In this section:
- Diagnostic tests and procedures
- Stigma Spotlight: Self-blame
- Lung cancer staging
- Tumour testing
- Diagnostic Assessment Programs
- Sharing your diagnosis
If you are facing a lung cancer diagnosis – or you care about someone who is – we can help you find the support you need. Speak to a Certified Respiratory Educator through our Lung Health Line. We’re available Monday – Friday, 8:30 a.m. to 4:30 p.m. EST. Chat live at lunghealth.ca, email us, or call us toll-free at 1-888-344-LUNG.
Diagnostic tests and procedures
If you’re experiencing the early symptoms of lung cancer or you’ve had something concerning show up during screening, it’s time to investigate further.
The first step is a detailed medical history. Your doctor may ask questions about any medical problems you have experienced, your smoking history, where you live and work, whether you have a family history of cancer, and if you have noticed any symptoms.
Next, it’s time to move on to a physical exam, chest X-ray, and/or sputum analysis (cytology) – that’s a test that checks the phlegm you cough up for cancerous cells. If these tests show any abnormalities, you may need further testing.
You will be sedated for this procedure. A thin, flexible tube (bronchoscope) with a tiny light and camera will be inserted through your mouth or nose and into your lungs. This helps to find tumors and can break a piece of tumor off for examination under a microscope.
Needle biopsy (fine needle aspiration)
First, you’ll receive a local anesthetic that will numb any pain. Next, a thin needle is inserted into your chest. The needle collects a small piece of the tumor for examination under a microscope.
First, you’ll receive a local anesthetic that will numb any pain. Next, fluid from around your lungs will be drawn out with a needle and looked at under the microscope. This test can also be used to treat a condition called pleural effusion, where too much fluid collects between the lining of the lungs (pleura) and the wall of the chest cavity.
Endobronchial ultrasound (EBUS)
First, you’ll receive a local anesthetic that will numb any pain. A thin, flexible tube (bronchoscope) will be fitted with an ultrasound device and inserted into your airways. Images are then sent to a monitor. Biopsies can be taken if lesions are identified.
Mediastinoscopy or thoracoscopy
This test helps to find out if tumor cells have spread to the lymph nodes. It is done under general anesthesia. During the procedure, the doctor makes a small cut at the base of your neck and inserts a thin tube. The tube collects fluid samples and small pieces of tissue from the lymph nodes near your throat and lungs behind your breastbone. These samples are tested for cancerous cells.
This procedure is usually done if previous testing hasn’t confirmed a diagnosis. It is done under general anesthetic. A surgeon will open your chest and take samples of your lung tissue and lymph nodes.
This scan takes detailed X-rays that are blended together in a computer. You lie on a table and stay very still while the scans are being done. Before the first scan you receive an injection of dye to help the CT scan take a better picture. The scan is painless, but you may find lying still is uncomfortable.
Around 30% of people with lung cancer blame themselves for their diagnosis. This self-blame can leave them hesitant to disclose the diagnosis to their friends and family, and can lead to social isolation at the exact time when a person needs their community to rally behind them!
Diagnosis & Self-Blame
Lung cancer staging
An important part of a lung cancer diagnosis determining the stage (extent) of the cancer. This will help guide decisions about the most appropriate treatment approach for you.
The stages of non-small cell lung cancer:
- Stage 0: Abnormal cells are found, but they are precancerous (not considered cancer yet).
- Stage I: The cancer is found only in the lung, and has not spread to any lymph nodes. The tumor is quite small – generally smaller than 2 inches (5 centimetres) across.
- Stage II: The tumor is larger than 2 inches (5 centimetres) across, or it may be a smaller tumor that involves nearby structures such as the chest wall, the diaphragm, or the lining around the lungs (pleura). Stage II cancer may also have spread to nearby lymph nodes.
- Stage III: The tumor has grown very large and has invaded other organs near the lungs, or a smaller tumor is accompanied by cancer cells in lymph nodes farther way from the lungs.
- Stage IV: Cancer has spread beyond the affected lung to the other lung, or to distant areas of the body. Almost half of all lung cancers are diagnosed at this stage.
Small cell lung cancer is staged a little differently:
- Limited stage: The cancer in only on one side of the chest. It is found in one lung and maybe in nearby lymph nodes on the same side of the chest.
- Extensive stage: The cancer is in both lungs or in distant lymph nodes and organs of the body.
6 ways to regain a sense of control during your diagnosis and treatment
- Make a list of questions to ask your doctor or lung cancer care team members
- Take an active part in the decision-making about your treatments
- Accept help when it is offered (but don’t hesitate to ask for support, too!)
- Think about what is important to you and what you would like to see happen
- Set achievable goals and plan how to reach them
- Talk with others about how you are feeling. The Certified Respiratory Educators who run our Lung Health Line are here for you.
What is Molecular Testing?
Molecular testing (sometimes called biomarker or genomic testing) is the first step in connecting patients with a group of treatments called targeted therapies.
Targeted therapies are a relatively new type of medicine used to treat advanced non-small cell cancer. They work by interrupting the growth and function of cancer cells by attacking specific targets on or inside of them. Compared to standard chemotherapy, these therapies can offer reduced side effects while providing other quality of life and cancer-fighting benefits.
Molecular testing is done in a lab, where a pathologist examines tumour tissue samples for biological changes in genes or proteins. Based on the results, a person may qualify for common targeted therapies, like epidermal growth factor receptor (EGFR) inhibitors, anaplastic lymphoma kinase (ALK) inhibitors, or immune checkpoint inhibitors.
Early molecular testing improves patient outcomes and has a positive effect on lung cancer survival rates. But there are a few challenges that you should know about:
- Your access to biomarker testing depends on where you live in Canada, which means some people with lung cancer may qualify for cutting edge treatment without even knowing it. Others may find that clinical trials are their only shot at getting their tumours tested and accessing the up-and-coming therapies they need.
- This testing takes time, especially when technology evolves faster than government policy. The result is frustrating bottlenecks that cut into crucial treatment time, with wait times of up to six weeks.
If you have been diagnosed with non-small cell lung cancer, ask your doctor about molecular tumour testing.
Diagnostic-Assessment Programs (DAPs)
Rapid-diagnosis assessment programs (RDPs) or diagnostic-assessment programs (DAPs) manage and coordinate care from referral to diagnosis. If you have access to these programs, you’ll benefit from a specialized care team and a patient navigator who can support you through all the steps of your diagnosis.
Why DAPs matter:
- Because they streamline the diagnostic process
- Because patient navigators help reduce treatment wait times, increase the chance of having molecular testing results at consultation, and improve access to important resources
- Because these programs keep people informed and supported.
Even though these programs are effective, they are not available in all provinces.
What we’re doing about it
The Lung Health Foundation is calling for provincial health organizations to work towards organized, centralized systems for diagnostic cancer assessment services.
Sharing your diagnosis
When you announce it, how you announce it, and to whom you announce it is your choice. These tips can help you prepare for these conversations.
Talking about your diagnosis may help you adjust to the situation and start to think about the way forward. It can be helpful to talk with a social worker at your cancer centre, too.
Friends and family
Telling your family and friends about a lung cancer diagnosis can be a big challenge. You may still be reeling from the news yourself. You might be worried about being able to talk about it without losing control, or you may be uncertain about what to say because you do not fully understand the disease or what treatment options will be available for you yet.
Here are some ideas about what to do when you are ready to talk:
- Start the conversation somewhere you won’t be interrupted. Turn off the TV and put your phone away
- If it makes you feel more comfortable, have someone who already knows about your diagnosis with you
- Provide information a few sentences at a time to give the person a chance to absorb the details.
- As you speak, periodically ask if they have any questions.
- Don’t be alarmed by silence. The person may just need some time to take everything in. If you do want to break the silence, you can ask “What are you thinking?”
Talking about your diagnosis may help you adjust to the situation and start to think about the way forward. It can be helpful to talk with a social worker at your cancer centre or in the community about this topic.
Children and teens
When speaking with children or teenagers, it’s usually best to explain your diagnosis in an open and honest way. Try to tailor the amount of details to age and developmental stage of the child, knowledge, capacity for understanding, relationship to the person with the diagnosis, and prognosis of the disease.
Just like many adults, children and teenagers may not be prepared to discuss everything all at once. Look for cues as to how much they are ready to take in and follow their lead. Tell them they can ask you questions at any time.
You do not have to tell your co-workers if you don’t want to. However, applications for leave or disability may need your employer’s support. It may also beneficial to share a plan with your boss about how your workload will be managed.
If you do share your diagnosis with your coworkers, be prepared for different reactions. Some may be preoccupied with how your illness will affect them or increase their workload. Some may be very supportive and seem to know just what to say and do, while others may struggle to find the words. They may feel sad and uncomfortable and be afraid of upsetting you. Other still might act overly cheerful and attentive.
Ask for support if you need it. You may be able to receive counselling through an employee assistance program, if your company has one. Your human resources department may be able to tell you about other programs or employee benefits that may help you.
What to do when someone asks, “Do you smoke?”
It’ll probably happen at least once. You’ll start a conversation about your lung cancer diagnosis, only to be met with a little (or a lot) of blame and judgement – usually in the form of a question like “Well, did you smoke?”
This is the wrong question. In fact, we feel so strongly that this is the wrong way to react to a lung cancer diagnosis that we teamed up with Lung Cancer Canada to create an entire campaign dedicated to asking the right questions about lung cancer!
This kind of blame-game just doesn’t happen with other cancers and illnesses. Details about your smoking history belong in a respectful, confidential medical history with your health-care provider, NOT a conversation with family, friends, or co-workers – whether you’re an ever-smoker or a never-smoker!
Nobody Deserves Lung Cancer
- If you choose to respond to this type of question, here are a few responses that can be helpful:
- Lung cancer has a number of causes, of which smoking is only one.
- If you have lungs, you can get lung cancer.
- My smoking history doesn’t matter anymore – I need support now.
Lung Cancer Screening
“Screening” means checking for cancer before symptoms develop, even if you feel healthy. Screening can help detect cancer in its earliest stages.
Diagnosis and Staging
Being diagnosed with lung cancer is often life-changing, and emotional distress is common. Understanding the steps and procedures can help you feel more in control, prepare you to advocate for yourself during your treatment.
Navigating Your Lung Cancer Care
The cancer care system can seem overwhelming at first, but we’re here to help you navigate it in a way that makes you feel empowered and supported.
Your treatment team will consider a number of factors when choosing treatments that will fight your cancer most effectively. They will consider your overall health, age, and personal situation.
Questions and Answers About Coping with Lung Cancer
The questions we list here are the top coping questions reported by people with lung cancer. Our answers provide some basic information, but we encourage you to discuss any concerns or questions with your oncologist and other members of your cancer care team.