Over half a million Americans have been diagnosed with lung cancer at some point in their lives. Even though that number will likely continue to go up, new diagnostic tools and treatment options are becoming available every year.
While that’s exciting news, this can leave you with many questions. Beyond surviving lung cancer, what tools and resources are available to help you choose to thrive no matter your quality of life?
Healthline spoke to several lung cancer survivors as well as a noted oncologist to get the most up-to-date information on what life after lung cancer can look like.
Dr. Raymond U. Osarogiagbon, director of the Multidisciplinary Thoracic Oncology program at Baptist Cancer Center in Memphis, Tennessee, says that people who survive lung cancer at an advanced stage might live with recurring symptoms.
“Symptoms might be those of residual cancer, including a cough, worsening shortness of breath, or pain if the cancer spread to somewhere painful, such as bone or nerve,” says Osarogiagbon.
Even if you completely achieve remission, you may have what Osarogiagbon calls symptoms of treatment. These will depend on what type of treatment you received for your cancer.
“There could be symptoms of radiation such as shortness of breath and cough or esophagitis [pain on swallowing],” he says.
Side effects of chemotherapy tend to be short-term and can include:
Long-term side effects from chemo can occur, including chemotherapy-induced nerve damage that can cause numbness and tingling. If surgery was part of your treatment, you may experience long-term shortness of breath from having part of a lung removed or pain in your chest from the surgery site.
Because of the distinct ways that lung cancer can impact your body, you may feel isolated or that you have a limited quality of life even when you’ve achieved remission. That’s where resources for lung cancer survivors can play an important role.
It’s estimated that one-third of lung cancer cases won’t be diagnosed until stage 3 or later.
After you’ve received a diagnosis, you may consider identifying support groups that you would like to be a part of. Once you’ve completed your treatment, you may still wish to participate in these groups for additional support or to help others who have been diagnosed.
“Organizations like the American Cancer Society and GO2 Foundation provided me with so much helpful information as I navigated treatment for stage 3 non-small cell lung cancer,” says Ron Simmons, a 59-year-old lung cancer survivor from Midlothian, Virginia.
“I was so encouraged by the experience that I became a lung cancer ‘phone buddy.’ And now I am also a part of Notes of Encouragement, a support program for people living with lung cancer, through which I share words of hope with people who are currently going through treatment as well as with their loved ones. I’d encourage anyone facing lung cancer to look into these resources online.”
When lung cancer has advanced to stage 4, it is typically not considered “curable.” However, targeted, advanced treatments that prolong your life are becoming more widely available for stage 4 lung cancer. These treatments are significantly shifting the outlook for survivors.
“I would tell anyone that has just been diagnosed [with lung cancer] to do anything you can to fight, and to never give up,” says stage 4 lung cancer survivor Sanda Cohen.
She describes the initial “why me?” phase of getting a diagnosis as common, but says you should put your energy toward what happens next.
“Get ready for a roller coaster of labs, X-rays, consults, procedures, and appointments. We are lucky to live in an age where we can research our disease and our options from our homes on our phones.
“However, that can never replace listening to the team of medical professionals that are in the midst of planning the course of your treatment and plotting out the best path available for you. I quickly learned about the many new options that are now available to cancer patients, especially the field of immunotherapy.
“As far as considering myself a survivor, I know I am, but to me it’s always an ongoing process. I am fortunate to be doing well. Even five years ago I would probably not have gotten the treatment — in my case an immunotherapy drug called Keytruda — that has made the difference in my and many others lives.”
Tabitha Paccione of Cypress, California, also shared her experiences with Healthline.
“When I was first diagnosed with stage 4 lung cancer, I felt very isolated even as my family, friends, and peers were there to lend support,” says Paccione.
Paccione was a 35-year-old teacher, wife, and mother of two when she was diagnosed with stage 4 lung cancer and given a prognosis of living only 3 to 6 months. Paccione is now 40 years old and a survivor advocate.
“Through my own research I found LUNGevity, which completely shifted my journey and helped me feel empowered. They offer in-person and virtual support groups for patients and caregivers and have helped me and my husband feel energized and motivated around my treatment.
“I’ve also found support groups that are focused to my specific lung cancer through ALK Positive. They also offer an ALK Positive Mom Talk support group that is for patients or spouses.”
“The outlook for stage 4 lung cancer is improving rapidly,” says Osarogiagbon. He notes research into specific gene mutations that are game-changers for creating personalized treatment plans.
“Immunotherapy given alone or added to chemotherapy has also significantly changed the outlook of lung cancer patients with stage 4 disease,” he says.
“More patients are living much longer, tolerating treatment much better, and seeing not only longer life expectancy after diagnosis of stage 4 lung cancer, but also much better quality of life. We are seeing more 5-year-survivors, especially those with mutation-driven stage 4 lung cancer.”
Moving forward from lung cancer is more possible than it has ever been. With targeted immunotherapies and ongoing research, life expectancy even after an advanced lung cancer diagnosis is more promising than ever.
Ask your oncologist what type of support groups they recommend for you during and after your lung cancer treatment.