Getting ‘life back’ after lung cancer

Later that summer, Marcia Budde, of Portage, noticed she became short of breath while walking her two Shelties. She also began to wheeze in her sleep.

“The steps were starting to get me,” she said. “I’d get to the top of the steps and go, ‘Whew, I’ve got to sit down,’ so I knew something was going on.”

Initially diagnosed as allergies, Budde pushed for additional testing to address her worrisome symptoms. A second chest X-ray, this time in November 2020, revealed that Budde had a 3.8 centimeter tumor in her left lung. Follow-up tests at UW Health | UW Carbone Cancer Center confirmed she had stage IV lung cancer that had spread to her lymph nodes.

“I’ve known nobody in my family with lung cancer,” Budde said. “I don’t smoke, and I was healthy as a horse up until that point.”

Budde’s cancer also had a rare mutation, called epidermal growth factor receptor (EGFR) gene exon 20 insertion. EGFR is involved in cell signaling pathways that control cell division, and various mutations during that process can lead to cancer. At the time of her diagnosis, there were no targeted therapies exon 20 insertion. Now, there are two FDA-approved therapies.

Budde began a difficult chemotherapy journey—14 rounds between December 2020 and October 2021. As brutal as her side effects were, including being bedridden for several days between treatments, the love and support of her family and friends helped her endure.

Then, in late November 2021, a follow-up PET scan showed the chemotherapy significantly shrank her main tumor site and eliminated all other areas of spread. Additional treatments with stereotactic body radiation therapy, a form of external beam radiation that delivers a high dosage of radiation in a precise location, killed the lung tumor as well.

Dr. Toby Campbell, a thoracic medical oncologist who is treating Budde, said it’s not typical for stage IV lung cancer patients to show no evidence of cancer after treatments.

“I would call this an extraordinary response,” Campbell said. “It's going great.”

He added that, while tobacco use is a major cause of lung cancer, about 10 to 20 percent of lung cancer patients in the U.S. have no history of smoking. The disease can also be caused by environmental toxins, such as radon exposure and pollution, a family history of cancer, or a myriad other factors.

“Radon famously is considered to be the second most common cause, but the list of potential causes is long,” Campbell said.

For the foreseeable future, Budde will be monitored for a recurrence of cancer. She focuses on enjoying every day and getting back to RV travel with her husband. She also tries to stay active and eat healthy.

Budde found comfort and support in online communities of fellow lung cancer patients, even a group specifically for patients with exon 20 insertion.

“After a diagnosis like this, you have to learn everything you can about this disease,” Budde said. “You need to join online groups of people who are going through the same thing as you are. You are fighting for your life, and you have to use every tool available if you want to beat it.”

Budde also hopes that others who are going through similar journeys see that a dire diagnosis does not mean all is lost.

“While the treatments were horrible, at least in my case they gave me my life back,” Budde said. “I hope other cancer patients will get a measure of hope from what I have gone through.”