Living and Thriving After Lung Cancer
This woman has survived not one but two non-small cell lung cancer diagnoses. Powerful new therapies offer hope for you, too.
The first time Bonnie Ulrich, 60, was diagnosed with lung cancer, it was 2006. Her doctor caught it early—so early that it was still stage I (meaning the cancer is only in the lungs and hasn’t spread yet) and they were able to surgically remove it, no chemo or radiation required. After that, everything was going well, and her regular scans kept coming back clean—until October 2019.
“I knew something was wrong,” Ulrich says now. “I was having shortness of breath. I was jazzercising four times a week and lifting weights, and then I couldn't walk from one side of my office to another without running out of breath.”
She went back to her doctor. A chest X-ray and CT scan didn't show anything concerning, but a blood test revealed very high levels of carcinoembryonic antigen (CEA), a protein that’s known as a tumor marker. According to the U.S. National Library of Medicine, a tumor marker is a substance the body makes in response to cancer cells in the body. Since Ulrich has a history of lung cancer, a high level of a tumor marker was a huge red flag.
“My doctor sent me to the oncologist, who did more tests and a biopsy,” Ulrich says. The results came back: inoperable stage IIIA non small cell adenocarcinoma. Stage IIIA is considered an advanced and incurable stage of lung cancer, though treatments may be able to significantly increase the survival rate, depending on where the cancer has spread to.
With over 188,000 people in the U.S. being newly diagnosed with non-small cell lung cancer (NSCLC) each year, Ulrich’s experience is not uncommon. And while an advanced-stage diagnosis almost certainly marks the beginning of a daunting health journey that brings with it many challenges—including intense anxiety about how it could all play out—there are more treatment options than ever before to improve both the quality and length of life with NSCLC. Some persistence and hope can’t hurt, too, as Ulrich has learned.
NSCLC: No Small Thing
About 80% to 85% of all lung cancers fall into the category of NSCLC, says Kenneth K. Ng, M.D., a medical oncologist specializing in treating lung cancer at Memorial Sloan Kettering Cancer Center in Uniondale, NY. In the U.S., adenocarcinoma—Ulrich’s diagnosis—is the most common subtype of NSCLC. The other two subtypes are squamous cell carcinoma and large cell carcinoma.
“About 80% of NSCLC is related to tobacco smoking,” Dr. Ng adds. Ulrich had been a smoker for almost 30 years before her first diagnosis and didn’t fully kick the habit after her first bout with lung cancer. After her surgery, she stayed tobacco-free for a while, but fell back into it when her father got sick. “It’s an addiction, and it was my go-to mode of coping,” she acknowledges. She smoked on and off after that, and also dabbled in vaping. She hasn’t smoked anything since her October 2019 diagnosis.
According to the National Cancer Institute, in stage IIIA NSCLC, the tumor is 5cm or smaller and the cancer has spread to the lymph nodes on the same side of the chest as the tumor. Treatment may include some combination of radiation therapy, chemotherapy, and/or surgery, depending on the size and location of the tumor, plus other factors like how well you will tolerate treatment.
Ulrich’s doctors told her that this time around, surgery was not an option. So she had both chemotherapy and radiation to try and contain the cancer and stop it from spreading any further. “I did nine rounds of chemo. I had a port installed, the whole nine yards. I also did 30 radiations, five days a week for six weeks,” Ulrich says, who received a year of immunotherapy after finishing chemo and radiation. “It was fairly new and showed some really great results.”
Breakthrough NSCLC Treatments
Immunotherapy works by reprogramming the body's immune system so that it can fight the cancer, Dr. Ng says. “It helps the body’s immune system recognize the cancer cells and wage war against them by using the body's own T-cells [immune cells].” It’s typically delivered as an infusion treatment once every two, three, four, or six weeks, depending on the drug.
The drug Ulrich was on works by targeting the PD-L1 protein, a protein on certain T-cells that blocks them from attacking other cells in the body. By blocking the protein, the immune response is boosted and the body fights the cancer cells. There are a few different types of immunotherapy drugs that target PD-L1, but this one in particular is used in people with stage III NSCLC whose cancer cannot be removed with surgery and has not gotten worse after chemotherapy with radiation, per the American Cancer Society. The goal of treatment is to keep the cancer in check.
Immunotherapy still can come with some side effects, including fatigue, cough, nausea, skin rash, and loss of appetite, but Dr. Ng notes that it’s not nearly as toxic as systemic chemotherapy. The side effects are more minor and manageable and have better medications to help support cancer patients during treatment. These include really effective anti-nausea medications to help improve quality of life in patients being treated for advanced NSCLC, Dr. Ng says.
Within the past 10 years, treatments for NSCLC have advanced tremendously, and the general prognosis has improved. “Patients are living longer with improved quality of life,” he says. Immunotherapy is not the only game-changer for this disease; other targeted treatments—which can target lung cancers caused by specific DNA mutations—are extending people’s lives longer than ever before. Exactly how longer varies, says Dr. Ng, adding that the average life expectancy now for a person with advanced NSCLC is about a year and a half, compared to no more than 8 months 10 years ago. Some patients can live upwards of five to seven years on targeted oral therapies alone.
“I tell patients that advanced NSCLC is not curable but it is highly treatable, and there is hope for a good response to treatment and for living longer,” Dr. Ng says.
The Cancer Returns
After a year of immunotherapy, Ulrich’s husband joined her to “ring the bell,” a rite of passage for cancer patients who finish treatment. Unfortunately, two days later, a follow-up PET scan showed something on her lung. “They did a biopsy and sure enough, it was cancer. It was contained, by the grace of God, to the same lung. But it was right along my surgical suture line,” she says. “They never really did find out if it was a true progression from the 2019 diagnosis or by chance the 2006 just happened to come back. I don't even think they know to this day.”
Ulrich had more chemo, plus another 30 radiations, five days a week for six weeks. She finished her last treatment April 2, 2021; she had her first PET scan in June. “At the moment, I am stable,” Ulrich says. Now, it’s a waiting game. “They don’t know if I’m a candidate to go on another round of immunotherapy,” she adds. The plan at the moment is for her to be tested every three months to monitor for any signs the cancer is growing or spreading. In the meantime, she gets to enjoy a “normal” summer, she says, without treatments taking over her life.
It’s been a while since she’s been able to do that: After her 2019 diagnosis, she had to take family and medical leave for three months while she underwent treatment, finally returning to work about a month before the COVID pandemic hit. Thanks to Zoom culture that took over during pandemic, she was able to work from home through her treatments this time. “I would take my laptop to chemo, because I couldn't bring anybody with me. So for five hours while I was in chemo, I would work.” While many people may be annoyed about having to go back to the office, Ulrich feels grateful and blessed that she is healthy enough to return.
Your perspective can change when you’ve gone through what she’s gone through, she says. “You learn to not take things for granted. I could only have three months. I don't know what is going to happen in my next scan. None of us know what’s going to happen scan by scan by scan.”
Coping With NSCLC
Ulrich uses breathing exercises to stay calm and hopeful. “I do these breathing exercises and in my mind, I’m breathing in and thinking to myself, ‘Just breathe and believe,’ because that’s what keeps me going, along with my advocacy. I’ve become a huge advocate for lung cancer awareness.”
When she was first diagnosed with advanced NSCLC, Ulrich says she felt really alone. “I left the hospital being diagnosed with stage IIIA lung cancer, and they just handed me a pamphlet. There was no talk about support groups.” (Find a NSCLC support group here.) She also battled many mixed emotions. “There’s this guilt of having lung cancer,” she says, especially when she’d tell others about her diagnosis because she smoked for so many years. She now works with the nonprofit organizations GO2 Foundation, Lungevity, and the White Ribbon Project, and volunteers as a mentor to help support people who are newly diagnosed.
“Part of what I do is try to get rid of that stigma and I let newly diagnosed patients know that it’s OK to say you have lung cancer. If you have lungs, you can get lung cancer. And you’re not alone,” she says.
At one point, Ulrich wasn’t sure if she’d make it to 60, see her granddaughter turn 5, or pin her son’s badge on him at his fire academy graduation. Thinking about those things is what helped her persist through all of the exhausting treatments she endured. “I would lay on the radiation table thinking, ‘I have got to do this. I have to be the one to pin his badge on,’” she says. “You’re sick and have all this time with this port stuck in you or laying on the radiation table, and your mind starts thinking. I’d have Jimmy Buffet in one ear, because his music is very uplifting, and I would tell myself I had to get through it.”
Hoping for a Cancer-Free Future
That doesn’t mean every day is great. “I have days where I don't want to get out of bed and deal with it or think about lung cancer. There are a lot of ups and downs; I have to handle the low points, and then I can really ride the high times and be able to share that with other people who might need it,” Ulrich says. “I could have very easily thrown my hands up and said ‘Eff it.’ But instead, I said: ‘Let’s give it another shot and see what happens.’ And now we’ll see what happens in September.”
Until then, she plans to spend her summer traveling to a few lung cancer awareness conferences with her husband and soak up as much time as she can with her grandkids. There’s a lot of lost time to make up for after a socially distant pandemic year—and she’s not taking a moment of it for granted.
CEA Test and Tumor Markers: U.S. National Library of Medicine, Medline Plus. (n.d.) “CEA Test.” http://www.medlineplus.gov/lab-tests/cea-test/
Stage IIIA NSCLC Definition: National Cancer Institute. (n.d.) Dictionary of Cancer Terms. “Stage IIIA non-small cell lung cancer.” http://www.cancer.gov/publications/dictionaries/cancer-terms/def/stage-iiia-non-small-cell-lung-cancer
Treatment Options: American Cancer Society. (2021.) “Treatment Choices for Non-Small Cell Lung Cancer, by Stage.” http://www.cancer.org/cancer/lung-cancer/treating-non-small-cell/by-stage.html
Facts About Immunotherapy: American Cancer Society. (2021.) “Immunotherapy for Non-Small Cell Lung Cancer.” http://www.cancer.org/cancer/lung-cancer/treating-non-small-cell/immunotherapy.html