What if My Lung Cancer Comes Back?
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Katie Trimble is a two-time lung cancer survivor. At age 48, the never-smoker from Centerville, Utah, who hiked every day, was diagnosed with stage 3 lung cancer in March 2021.
To shrink the lime-sized tumor in her right lung, Trimble was treated with a medication targeting the EGFR gene mutation that causes her type of cancer. She also underwent surgery, chemotherapy, and radiation.
A year later, an imaging scan and blood test indicated that her lung cancer was gone. Then, just a few months later, in July 2022, she started experiencing severe headaches. They were “so painful I felt like my head was going to explode,” Trimble recalls. A visit to the emergency room and a CT scan revealed her lung cancer had spread to her brain.
Throughout the recurrence and subsequent treatment, she has tried to maintain a positive outlook, even though at times it was challenging.
“It’s mind over matter,” says Trimble, now 51. Working 20 to 40 hours per week as a hairstylist helps her focus on something other than cancer. “If you don’t wallow in self-pity, I think it’s better,” she explains.
Here’s what experts say you should do if you’re worried about or have been told your lung cancer has come back.
First, Get Regular Checkups After Finishing Treatment
After finishing treatment for lung cancer, recurrence is a possibility that looms on many survivors’ minds. For some, unfortunately, recurrence becomes a harsh reality.
“Some survivors say it’s worse than when they were first diagnosed,” notes Emily Tonorezos, MD, director of the Office of Cancer Survivorship at the National Cancer Institute in Rockville, Maryland. “Going through cancer treatment is traumatic, and so, to face a recurrence might feel like revisiting that trauma.”
But it’s important to not let fear of recurrence prevent you from following up with your doctors and doing the tests they recommend. Even if you feel fine, staying on schedule with these regular checkups is essential.
“Many times, there are no symptoms, particularly in early stages,” says Janani Reisenauer, MD, chair of thoracic surgery and an interventional pulmonologist at Mayo Clinic Comprehensive Cancer Center in Rochester, Minnesota. “That is why surveillance with imaging is so important for early detection — even with recurrence.”
Lung cancer recurrence is frequently detected on a CT scan of the chest that is repeated at specific intervals after initial treatment. It’s usually done every six months initially and then annually, says Albert Rizzo, MD, chief medical officer at the American Lung Association and a practicing pulmonologist in Wilmington, Delaware. Sometimes, he adds, cancer is a surprise finding on chest imaging done for other reasons.
Know the Symptoms of Lung Cancer Recurrence
Some patients start to have symptoms before their next surveillance scan. Experts say these symptoms include:
- Chest discomfort
- Shortness of breath
- A new cough
- Coughing up blood
- Dizziness
- Headaches
- Bone pain
- A spontaneous bone fracture
- Weakness
- Fatigue
- Weight loss
If your symptoms are persistent, your doctor can order imaging tests to see if your lung cancer has come back.
Find Out the Extent and Type of Lung Cancer Recurrence
Besides visualizing the chest, scans can look at other areas of the body where lung cancer may spread, including abdominal structures and bones. If you have headaches or other neurological symptoms, a brain scan may be recommended, says Christina Annunziata, MD, PhD, senior vice president of extramural discovery science at the American Cancer Society in Atlanta.
Based on the imaging’s findings, your doctor will be able to assess the extent of your lung cancer. And depending on your tumor’s location, a biopsy may be done to confirm a diagnosis, says Anne Chiang, MD, PhD, an associate professor in the division of thoracic medical oncology at Yale University School of Medicine in New Haven, Connecticut.
The biopsy can also test for specific mutations and biomarkers to determine which treatment is most likely to be effective. Be sure to ask your doctor whether your cancer is positive for any targeted mutations or biomarkers (sometimes referred to as next-generation sequencing), says Clarke Low, MD, director of thoracic oncology at Intermountain Health in Salt Lake City.
Specific treatments can be prescribed to target these particular mutations in the lung cancer cells, says Dr. Annunziata. “The mutated genes (EGFR, ALK, ROS, BRAF, MET, RET, NTRK, HER2) would direct the choice of treatment,” she explains.
Most targeted treatments are given as pills, but some are intravenous. If a patient doesn’t have any mutations for which there are targeted treatments, then “a biomarker (PD-L1) can predict how effective immunotherapy will be and whether it can be used on its own or in combination with chemotherapy,” says Dr. Low.
Ask About Treatment Options and Prognosis for Lung Cancer Recurrence
Low also recommends asking these questions:
- Where are all the areas of cancer?
- Is there an opportunity to cure the cancer with aggressive treatment?
- Or, is the goal to control the cancer for as long as possible and promote quality of life?
- Are there any clinical trials for my type of lung cancer?
“You should always ask about clinical trials,” says Dr. Chiang, “since participation may allow access to cutting-edge treatments that won’t be commercially available until many years.”
Now may also be the time to ask your doctor about your prognosis. This will depend on many factors, including how long it has been since your initial lung cancer was treated, where in the body the lung cancer has recurred, and how many locations in the body the cancer has spread, says Low.
A cancer that recurs in the lung may respond to a change in chemotherapy, targeted therapy, or immunotherapy. Distant recurrences in the bone or brain may benefit from radiation therapy. In some cases, surgery may be an option, Dr. Rizzo says, noting that “this is where discussions with your treating team are so important.”
Dr. Reisenauer adds that “sometimes recurrences can be managed with curative intent, but this is very variable.” Your overall health also factors into your prognosis.
Build a Strong Support Network
A strong support system can make a big difference in helping you cope with a recurrence of lung cancer. Reisenauer suggests asking your doctor to connect you with a social worker and mental health professional. “This is an integral part of a patient’s treatment,” she says.
Hopefully, you had a supportive network of family or friends at the time of your initial diagnosis. And hopefully, you can lean on them for support during your recurrence as well, says Rizzo.
There are also online and in-person patient support groups sponsored by advocacy organizations such as the American Lung Association. These groups “can offer advice and encouragement regarding next steps once a recurrence has occurred,” Rizzo says, adding that some patients in these groups have survived multiple recurrences.
Trimble says trying to stay upbeat and having family and friends rally around her has helped.
“The type of cancer that I have, I feel like there’s no cure for it, but you can still live a long life, depending on if the medication keeps working,” she says.
Her advice to others in the predicament of facing a recurrence of lung cancer: “Just know that there is a light at the end of the tunnel. [If you believe this,] you can beat anything that comes your way.”
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