What to Do After You've Been Diagnosed with Lung Cancer
- For metastatic or stage 4 lung cancer, ask about the genetic mutation results and also the PD-L1 testing.
- The tumor may be biopsied.
- Patients with a protein called PD-L1 may be better candidates for immunotherapy.
- Be sure to take care of your mental health after a cancer diagnosis.
Understanding the Stages of Lung Cancer
Once you have received your diagnosis, the staging process starts. In addition to a CT or CAT (initial computed tomography scan), doctors run a brain resonance imaging MRI to evaluate the effects of cancer on the brain. They may conduct a positron emission tomography scan to check if lung cancer has affected the liver, adrenal glands, and/or bones. All this information helps the doctor determine the stage of the cancer and ultimately suggest treatment decisions.
Having a clear understanding of cancer staging provides information not only to doctors but also to patients. The stage determines the likely outcome of the treatment and provides an educated estimate of the patient’s life expectancy and cure rate. Put simply, staging is a crucial part of understanding the disease and your individualized situation.
Steps to Take After Lung Cancer Diagnosis
- Find an Oncologist
Finding a good specialist, of course, has to be your first step after the diagnosis. You need to narrow down a list of oncologists near you to move forward with a treatment action plan.
Typically, an oncologist has a team of multiple members who work cooperatively when you undergo treatment. This team typically includes the following:
- A primary care physician will oversee general health during the cancer treatment
- Medical oncologist will oversee drug therapies, including chemotherapy, while treating you as the care team’s primary coordinator
- Pathologists interpret lab results
- A surgical oncologist may perform lung cancer surgery if needed
- A radiation oncologist will oversee radiation therapy, with a radiation therapist
- Oncology nurses assist the process when you undergo treatment
- Radiologists analyze and assess MRIs, CT scans, and PET scans to check if your cancerous cells are responding to treatment
- Oncology therapists and social workers will counsel you and connect you with various support groups
When selecting a medical oncologist to treat your cancer, look for a medically specialized thoracic oncologist. This type of doctor is a cancer specialist who focuses on cancers related to the thorax. Similarly, if you need a surgical oncologist, choose one with credentials as a thoracic surgeon. It is always better to speak with a primary care physician, local hospital, and health insurer to find a qualified oncologist.
Moreover, you can also find certified oncologists on listings from ASCO (The American Society of Clinical Oncology). If your lung cancer type is uncommon or severe, consider visiting the National Cancer Institute. It is a designated treatment center for cancer. Each NCI-designated treatment center delivers a reliable treatment for cancer with highly trained and qualified specialists.
2. Prepare for Your First Appointment
Successful cancer treatment is all about a collaborative partnership between the patient and their dedicated medical team. Your team keeps you informed about every aspect of your diagnosis as well as treatment. That is why you must find an oncologist who is skilled and experienced in his or her field. Plus, they should always be willing to interact with you openly and honestly. We recommend you write down questions and concerns before you meet with your oncology team. As the first appointment is about your treatment options and quality of life, it must provide you with the information and insights about the process ahead.
The National Coalition for Cancer Survivorship recommends some of these questions you may want to ask your oncologist:
- How do you choose a treatment option?
- What are the approaches that can be used to treat my cancer type?
- What are the chances of my treatment’s success?
- What realistic goals have you taken into account for my treatment?
- What will be the effects of treatment on my health and life?
- Will I be able to continue my work/career?
No matter how awkward it may seem, never hesitate to ask your healthcare providers about their experience, credentials, and area of practice devoted to lung cancer.
3. Understand Treatment Costs
On average, the cost of cancer treatment is higher than most other medical treatments. It is important to review your health insurance policy and find treatment centers that offer financial aid to assist the process if needed. When reviewing your health policy, be sure to find out the following:
- Deductibles (the amount you will pay for the services before your insurance covers them)
- Out-of-pocket maximum (the amount you will pay after your insurance plan covers all approved treatments)
- Copay (the percentage of covered treatment or services you are responsible for)
Work with your financial aid specialist to calculate your annual out-of-pocket expenses instead of worrying about the total treatment costs. The specialist will analyze your health plan and help you find out if you need a different policy or if it is better to increase upfront premiums.
If you determine you cannot afford treatment, ask your financial aid specialist to connect you with a suitable financial assistance program that facilitates lung cancer patients.
These may include but are not limited to the following:
- Supplemental Security
- Pharmaceutical Patient Assistance Programs (PAP)
- Patient Advocate Foundation
- Create a Support Group
Going through cancer treatment is, without a doubt, difficult. It is not just physical rigors that take a toll on you but emotional and mental stress that make coping with the disease hard. This is when you may need assistance with everyday tasks such as childcare, transportation, and work while you undergo treatment. One of the best ways to reduce stress related to a cancer diagnosis is to reach out to your loved ones.
Lean on Loved Ones During Lung Cancer Diagnosis
Letting in your close friends and family members on your treatment journey is one of the stages of accepting cancer. Share what your treatment involves with them.
It helps if your family and friends understand your needs and conditions. The more they know what you are going through, the more they will be able to support you in every aspect possible. In most cases, friends and family work as a team to offer much-needed support to the patient undergoing treatment. They schedule a time to help out in person and may even connect with you using care coordination apps and other digital health technologies.
Along with this, you can also find and talk to cancer survivors to get much-needed motivation for your cancer treatment. Finding or talking to people who are also fighting lung cancer will offer you a unique source of peace and comfort. In addition, many caregiving platforms and treatment facilities have support groups. You can become a part of these groups to get insights and referrals. These groups are also helpful to resolving your concerns regarding the treatment you are taking. Talking with other cancer patients can also help improve your diet regime and lifestyle. If you find it hard to approach an in-person support group, it may be easier to join an online support group instead.
Other Questions to Ask Your Doctor
There are questions you can ask that can be helpful in planning the best treatment possible for each individual.
First, your medical team will stage the cancer with imaging, a CT scan usually and sometimes an MRI and MRI scan of the brain. Then they need to get a sample of the tumor biopsy on which they perform some routine tests, the most important of which is a PD-L1 test, which helps direct the use of immunotherapy, but also more complicated testing looking for gene mutations in the tumor.
“There are two main types of lung cancer, non-small cell lung cancer, which is about 85% of lung cancers, and small cell lung cancer, which is about 15%,” Dr. Forde says. “Within that non-small cell category, there’s a subtype called non-squamous adenocarcinoma, and that’s the group of patients for whom genetic testing is very important on the tumor. Genetic testing is looking for mutations in the DNA, in the tumor, which are not present in your normal DNA.”
Dr. Forde says the important questions to ask when you receive a lung cancer diagnosis are:
- Ask about the histology or type of lung cancer.
- For metastatic or stage 4 lung cancer, ask about the genetic mutation results and also the PD-L1 testing.
The PD-L1 test is a “simple test” that involves staining a sample of the tumor with a marker for PD-L1. The lab gives the tumor a percent expression score ranging from from zero where none of the cells have PD-L1 expression and up to 100 percent where all of the cells have PD-L1 expression.
“The likelihood of the tumor responding to immunotherapy depends to a degree on the level of expression,” Dr. Forde says. A tumor with 90% expression PD-L1 on the surface is more likely to respond than one that has no expression.
Dr. Forde says that non-smokers should make sure genetic testing is performed before going directly on immunotherapy.
Understanding Lung Cancer
Lung cancer is the second most common type of cancer in the United States. Diagnosis and treatment of the disease can be tricky since symptoms often don’t appear until the cancer has spread.
An initial symptom, for example, could be as serious as a seizure if the lung cancer has already spread to the brain. But other symptoms can include increased coughing, chest pain, unexplained weight loss, shortness of breath, wheezing, losing your voice or persistent infections like bronchitis or pneumonia.
The two main types of lung cancer are non-small cell lung cancer, which makes up 85 percent of cases, and small-cell lung cancer. These types act differently and, accordingly, require different types of treatment.
Dr. Forde tells SurvivorNet about how distinguishing between the two types – and their subtypes – can be very beneficial.
What Happens When You’ve Been Newly Diagnosed With Lung Cancer
Screening for Lung Cancer
More men and women die of lung cancer than of colon, breast and prostate cancers combined, but how can screenings make a difference? Lung cancer usually affects people above the age of 65, but a small number of people are diagnosed younger than 45 years old.
Many lung cancers are found accidentally, but screening can help doctors diagnose lung cancers at earlier stages of the disease when successful treatment is more likely.
Coping with a Metastatic Cancer Diagnosis
Dealing with a mental health struggle looks different for everyone, especially when it comes to a cancer diagnosis. But feeling sad or anxious about the changes coming your way after hearing the “c” word for the first time is very normal and understandable.
“Grief comes in waves,” Dr. Scott Irwin, a psychiatrist and director of supportive care services at Cedars-Sinai Medical Center, told SurvivorNet in a previous interview. “They’re grieving the change in their life. The future they had imagined is now different.”
Dr. Irwin stressed how helpful talk therapy could be when dealing with the mixed emotions. It’s important to reach out to your doctor, a therapist or support groups in your community if you feel like you’re struggling.
Ni Guttenfelder can attest to the benefits of therapy. She was diagnosed with ovarian cancer in October 2017 and quickly decided she needed a therapist to help process her feelings. Her suggestion is to seek a counselor you’re comfortable with – one you trust and can open up to about your cancer diagnosis.
Advocating for Your Health
It’s so important to advocate for your health. You are your best healthcare advocate.
When working with your medical team, tell them precisely what you feel and raise anything that may feel off to you. Every symptom should have a plan to address it, and if you feel like you are not being heard, continue to push and seek a second opinion if your concerns are not being addressed.
The only way to know this is to continue to push for answers, telling your medical team exactly what you are experiencing and demanding that you receive the best treatment for your specific situation.
“Every appointment you leave as a patient, there should be a plan for what the doc is going to do for you, and if that doesn’t work, what the next plan is,” Dr. Zuri Murell, director of the Cedars-Sinai Colorectal Cancer Center, told SurvivorNet in a previous interview. “And I think that that’s totally fair. And me as a health professional– that’s what I do for all of my patients.”
Getting a Second Opinion
You should always get multiple opinions on your lung cancer diagnosis.
Doctors are not always in agreement about whether your symptoms might merit further testing and whether specific treatment methods might work best for you. Sometimes, what your first doctor says might fall short of fact, and a second or third medical professional might be able to catch cancer before it grows and spreads.
Dr. Steven Rosenberg, chief of surgery at the National Cancer Institute and one of America’s most renowned cancer doctors, agrees.
“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, because finding a doctor who is up to the latest of information is important,” Rosenberg previously told SurvivorNet. “And it’s always important to get other opinions so that you can make the best decisions for yourself in consultation with your care providers.”
Contributing: SurvivorNet staff