What Should I Do?
- 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. Treatment options are greater now than ever.
- Educate yourself about your specific lung cancer. Lung cancer takes many forms and each patient needs, and benefits from, a customized treatment plan: one designed for the exact molecular features of your tumor. Matching the right treatment to the right patient is key.
- Insist on Biomarker Testing. Learning your particular biomarker is essential to determining the best treatment plan.
- Enlist a friend or family member to accompany you to doctor visits. There is going to be a lot of information, and it’s important to have another set of ears and to keep comprehensive notes of all pertinent information. If no one is available to go with you to doctor visits, consider recording the session.
A lung cancer diagnosis yields all kinds of emotions: shock, depression, and fear among them. Take time to process the information you’ve been given. Once your head is clearer, here are some suggestions of things to think about and steps to take:
About Lung Cancer
Lung cancer is not hereditary and cannot be passed down to your children. However, anecdotally, it has been found to run in families. This is likely more a function of common risk factors, such as where they live, exposure to secondhand smoke or other pollutants.
It is worth noting that some communities have heavier radon exposure than others. Radon, a colorless, odorless, tasteless, and invisible gas is produced by the decay of naturally occurring uranium in soil and water. It has been shown to be the single largest cause of lung cancer in non-smokers and is thought to be responsible for nearly 20,000 cases of lung cancer every year.
Non-small cell lung cancer (NSCLC)NSCLC is the most common type of lung cancer: 8 out of every 10 lung cancer cases are NSCLC. Within the non-small cell lung cancer category, there are 3 subtypes:
Small cell lung cancer is a much less common form of lung cancer, affecting roughly 1 in every 10 people diagnosed with lung cancer.
Staging refers to where the cancer originated, if and where it has spread outside the lung. The stage of your cancer will directly impact the treatment plan.
Stage 1: Cancer is found in the lung, but has not spread outside of the lung
Stage 2: Cancer is found in the lung and nearby lymph nodes.
Stage 3: Cancer is found in the lung, lymph nodes and in the middle of the chest
Stage 3B: Cancer has spread to lymph nodes on the opposite side of the chest or to lymph nodes above the collarbone.
Stage 4: Cancer has spread to both lungs, into the area around the lungs, or to distant organs
No! Like all cancer, if caught early enough, lung cancer is curable. And, with the ever-changing landscape of research, more patients than ever before are managing it as a chronic disease.
If your cancer started in the lung, it is lung cancer. If it started anywhere else is your body, let’s say the colon, for example, those are colon cancer cells that have spread (metastasized) to the lungs and it is called metastatic colon cancer not lung cancer.
If you have lungs, you can get lung cancer. It is that simple. Once thought to be a disease solely of smokers, that is no longer the case. While smoking undoubtedly plays a role in lung cancer, it is not the only cause. While, smoking (even those who have quit) remains inextricably tied to lung cancer, 65% of new lung cancer diagnoses are among people who do not currently smoke.
Approximately 10% of men and 20% of women who develop lung cancer have never smoked. Among the many risk factors for lung cancer include exposure to radon, secondhand smoke, air pollution, asbestos, diesel exhaust or myriad other pollutants in the environment.
What are the different treatment options for lung cancer?
Your treatment plan will be dictated by several factors: primarily by the type of lung cancer and the stage:
■ Thoracic Surgery _ add a description
■ Targeted Therapies add a description
■ Immunotherapy add a description
■ Stereiotactic Radiation add a description
Will I be cured after lung cancer treatment?
While you may not be completely cured after lung cancer treatment, it is possible, and increasingly likely, that you will find a treatment that will allow you to live with lung cancer in much the same way that people live with HIV or Diabetes.
Targeted therapies are personalized medicine designed to target your specific disease and gene mutations. Targeted therapies have been found to have great benefit and fewer side effects while giving lung cancer patients more options for treatment.
Immunotherapy, refers to a medication that can be used to stop cancer cells from being able to circumvent the immune system thereby allowing it to do its work in battling the cancer.
Clinical trials determine if an investigational drug is a better line of defense than the current “best standard of care.” If you are deemed a candidate for a clinical trial, you will be given medication, however, you will not know if you are receiving the best standard of care or the new medication. This determination is made depending upon what phase the new medication is in.
How much do clinical trials cost or are they covered by insurance?
The cost of care that is included in the clinical trial will be covered by the trial sponsor. You may receive a new treatment that might become a best option for you. There may be additional expenses that might not be covered by the trial sponsor, so please carefully read the Informed Consent agreement. Discuss any concerns with a trial coordinator prior to making your decision.
How can I learn about clinical trials for lung cancer?
Thoracic oncologists are well versed on the latest research and experimental protocols. Let your doctor know that you are interested in being part of a clinical trial. You can also do some of your own research by using these two websites:
Antidote Match™ connects people with medical research studies, in the fastest and easiest way possible. yYu answer a few questions, and they will find the right trials for you. This helps you to gain access to the latest medical developments and world-class care.
ClinicalTrials.gov is a database of privately and publicly funded clinical studies conducted around the world.
Talking to Doctors
- 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?
- What are possible side effects?
- Discuss your medical history and tell your doctor about any medications – both prescribed and over the counter – that you are currently taking.
- Inquire as to whether medications are covered by insurance and, if they are not, what is the cost?
Bring a notebook. A notebook dedicated to 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. A notebook to refer back to 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:
If surgery is recommended, be sure to use a thoracic surgeon. You can either find this information online or simply ask the doctor..
If a treatment is recommended:
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, he or she 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.
Absolutely. Your doctor will not be offended. New discoveries in lung cancer research are moving more rapidly than ever before. It is impossible for every oncologist or surgeon to know everything. A second opinion is beneficial in confirming both your diagnosis and treatment.
- Are there support groups for people whose loved ones have lung cancer? How can I find one near me?
- Some of the same groups that support lung cancer patients also have sub-groups for families and caregivers.
- Is there some way I can help raise money for lung cancer research?
LCFA is proud to feature the stories of people who are living with lung cancer. Through advances in lung cancer treatments brought about by transformative lung cancer research, these lung cancer patients continue to inspire us by living full and productive lives.
Thanks for asking. All of us at LCFA have been touched by lung cancer and have found strength and solace in fighting the disease. We appreciate your wanting to join the battle! Here are some ways you can help:
○ Donate to lung cancer research and help shape the path to the cure for this disease
Are there support groups for people who have lung cancer or who are caregivers? How can I find one near me?
○ There are many lung cancer support groups, both in person and online. Here are 2 that you can join today:
■ Search Facebook Groups – such as ALK positive, EGFR-Resisters or ROS1ders.
○ Yes. Despite the fact that lung cancer is the leading cause of cancer related deaths – surpassing breast and prostate and colon cancer deaths) only 6% of Federal research dollars go to lung cancer research. Survivors and their loved ones are the loudest voices and the biggest advocates for more research dollars.
○ In addition, there is, unfortunately, a stigma associated with lung cancer. As it has become increasingly apparent that one only need lungs to get lung cancer, that stigma is shifting, but it is still an uphill battle.
○ Yes! LCFA is proud to have volunteers all over the country organizing, participating in, and/or hosting unique and creative events with the common goal of raising funds for lung cancer research. We’d love to hear from you and, if you are interested in getting involved, we would be more than happy to help you! Check here for some ideas.
How is LCFA different from The American Cancer Society?
○ LCFA’s mission is the improvement in survivorship of lung cancer patients through the funding of transformative science. Our goal is to raise money to fund the research that will bring us closer to making lung cancer a curable disease. As such, we work to raise awareness and serve as a resource for anyone seeking answers and access to the most current treatment information, scientific investigation, and clinical trials. We are here to help you every step of the way.
○ And these are the public education initiatives that help raise awareness.