Life changes after a lung cancer diagnosis. Coping with complex emotions, navigating treatment, finding support and learning to adapt are some of the challenges of living with lung cancer. Everybody's cancer is different, though. These survivors share their experiences.
Linnea Olson had just passed the 10-year mark since her diagnosis in 2005 when she was 45 years old. She had surgery to remove the lower lobe of her left lung followed by chemotherapy, but by 2008, the cancer progressed to stage IV, spreading to multiple areas in both lungs. Genetic tumor testing found that her cancer had a specific mutation and Olson then participated as one of the first few patients in the world in a phase I clinical trial for a targeted chemotherapy drug. She responded very well to the drug but some cancer persisted and her treatment has continued. "Over the last ten years, some cancer has always remained. I've had a really good response to the last three clinical trials I've been in, but for me, a really good response is 70 percent, meaning 30 percent of the cancer is still there," says Olson.
Barbara Adelman was diagnosed in 2014 at the age of 61 and had surgery to remove part of her lung. Her stage I cancer was caught early and she has not had chemotherapy or radiation. Now in remission, she has periodic chest scans to ensure any recurrence can be managed early.
The Emotional Toll of Lung Cancer
It is common for people who are living with lung cancer to deal with anger, fear and depression.
Olson says, "In the beginning, I was really depressed and angry about my diagnosis. The weird thing about cancer is that it's a disease that comes from within. Even though people like to think of it as another thing, it's not: it's our own self, growing out of control. I felt afraid of my body for a while like it had really let me down."
Adelman isn't afraid to admit she's afraid and deals with depression: "I'm more fearful now. I'm frightened they're going to find something else and yet, I could just as easily slip in the tub." Having lung cancer affects her ability to plan longer-term outings. She's a big baseball fan and enjoys Red Sox games, but is waiting to book a trip to the National Baseball Hall of Fame until she gets the results from her next chest scan.
The Importance of Having an Advocate
People living with lung cancer often need an advocate to help them navigate their journey.
Olson has enjoyed the companionship of her best friend from third grade who has been her advocate throughout the last 10 years, but other friends, family members and neighbors have been providing support along the way.
Unfortunately, Adelman has been facing her lung cancer without the support of family or friends. After hearing the word "cancer," she blanked out the rest of what her surgeon said. "I only spent three days in the hospital, but they were a blur. I remember the doctors telling me that the margins looked clean, but I don't remember the rest. When you're not feeling well and you're scared, you don't think about the questions to ask," says Adelman. For her recovery at home following surgery, she worked with a patient advocate to process the results.
Strength in the Face of Adversity
While they have both struggled with anger, fear and depression, both Adelman and Olson have each developed a strong resolve to take life one day at a time.
Olson says, "Ten years ago before I was diagnosed, there were so many things that I thought I couldn't do, due to a lack of confidence or that I just couldn't see myself doing. Looking back now, I have done so many things that I never thought possible, that oddly enough, now I feel more powerful than I ever felt before." On her blog, life and breath: outliving lung cancer, Olson says, "My cancer is not cured, but it is being managed. I am not only still alive, but alive and well."
Adelman keeps active, every day, not only to help her breathing but also to fight depression: "Recovery to me means that I'm doing my full workout every day and going horseback riding on the weekend." Adelman's fitness routine includes 15 minutes of weights and biking 30 to 45 minutes a couple of times per week, and every day she stretches and walks for two miles.
Support Is Available
By chance, Olson found another patient in her first clinical trial and connected with him in an online patient support group. "We became good friends. It was his bravery and the fact that he was doing what I was about to do, that helped me so much. I thought of him as my beacon," says Olson.
Adelman enjoyed taking part in a LUNG FORCE patient panel: "I felt really inspired and optimistic after I participated. I definitely wanted to go and talk to other people who have dealt with lung cancer, not breast cancer, because lung cancer is a different disease with a different prognosis and has different treatment options."
A Caregiver's Perspective: Defining a New Normal
Lisa Hamburger is a caregiver for her 64-year old husband Rick who was diagnosed at the age of 59 with both small and large cell lung cancer. When a tumor near his heart was found to be malignant, his doctors chose to treat Rick with chemotherapy and radiation first and then remove the remaining tumor with surgery four months later. Rick has also had radiation to his brain to treat a pea-sized tumor. He is currently in remission.
Her insights as Rick's caregiver echo those of people like Adelman and Olson. She says, "Everyone needs an advocate. Whether it's your spouse, your child or somebody else, somebody has to walk that journey with the other person, to get all the information. It's like a puzzle and all the parts are moving."
Hamburger had to give up working full time so she could focus on caring for her husband and accompany him for multiple treatments and appointments: "It was getting to be too much for me. I couldn't be two places at one time." Hamburger now works part time a few days a week.
She copes with her fear by taking things one step at a time: "I used to worry constantly and ask him every morning how he feels. Every now and then he says 'not so great' but that's our new normal."