The most common side effect of lung cancer is dyspnea, better known as shortness of breath. 90% of Lung cancer patients experience this at some point, during, and even long after treatment has ended. In a Lung Cancer Alliance survey, lung cancer survivors of 5 or more years, still rated it as their most problematic issue. It isn’t only lung cancer patients who suffer from breathlessness. Approximately half of all cancer patients complain of breathlessness at some point. (1) Shortness of breath is sometimes called air hunger. Unfortunately, for many cancer patients, it’s a part of their everyday life, negatively impacting their ability to do the things they need and want to do.
In the fall of 2015, Dan’s stage IV lung cancer had progressed in his lungs and had metastasized to his brain so it was time to change his treatment. They put him on a new type of treatment called immunotherapy, specifically, Opdivo. We had big hopes for this new drug which had been having great results in many patients.
Within 3 weeks, Dan developed a cough. Coughing was a known side effect of Opdivo. It was getting worse by the week. In November, less than two months into the treatment, we went away for a romantic weekend in St. Paul. We went on a tour of the St. Paul Cathedral and visited Landmark Center. We stayed at the Covington Inn, a floating bed and breakfast on a tug-boat sitting on the Mississippi River. Before leaving St. Paul, we walked along Summit Avenue, a historic district lined with well-preserved Victorian homes, including the Governor’s Mansion.
It was a turning point in our lives.
We got home in the afternoon and went to bed exhausted. Dan was in bed for days. It became nearly impossible for him to speak without breaking into a coughing fit. He had just walked over a mile down Summit Avenue, and a week later, he could no longer walk across the room without having to sit down. He couldn’t get a deep breath.
“Helpless. Frustrating. Scary.”
Shortness of breath can feel like a tightness in the chest or an inability to take a deep enough breath. In 2015, my husband suffered from severe breathlessness. I asked Dan to tell me in a few words what this felt like. He said, “Helpless. Frustrating. Scary, because as you continue to lose your breath, you know there’s a limit to what you can lose before you have a big problem. You see your everyday life getting more and more difficult. Just taking a shower is exhausting. Soon, you’re bedridden and hospice is the only thing you have to help. It’s really very sad.”
There are many causes of shortness of breath.
Among the causes of breathlessness in cancer patients (especially with advanced cancer) are:
- pleural effusion (fluid on the lungs)
- anemia (insufficient red blood cells to transport oxygen)
- obstruction of airways due to tumors
- lymphangitis (thickening of the lymphatics in the lung, sometimes caused by cancer cells)
- removal of part of all of a lung
- smoking-related lung issues
- heart failure or damage
- pulmonary toxicity caused by chemotherapy and/or radiation
- fatigue and pain which make taking a deep breath difficult
- an anxiety cycle that causes panic and a sensation of breathlessness.
Once your doctor determines the cause of your breathlessness, they will be able to give you some treatment options. The treatment for shortness of breath will depend on the cause of it. For example, if it’s caused by pleural effusion, the fluid around the lungs will need to be drained.
We began an investigation into the matter with his medical team, including an oncologist and a pulmonologist. He had bloodwork, scans, breathing tests, and a bronchoscopy. We were told that Dan’s cough and shortness of breath were was not a side effect of the immunotherapy, as was previously thought. The treatment wasn’t working, so the cancer had been progressing. He had lymphangitic spread (2). This is a term used to describe the spread of cancer throughout the lungs. Cancer was filling his lungs and he couldn’t breathe.
“Do you have a healthcare directive?”
The doctors began talking about decisions that needed to be made at the end of life. “What about intubation?” “Have you reassessed your healthcare directive?” We had lived with Dan’s terminal cancer for over three years and yet we were surprised by these questions. It was like having cold water thrown on us. It quickly brought the reality we were facing, into focus.
Along with attempts to ease the discomfort of breathlessness, Dan began one treatment after another. First, a traditional chemotherapy, and then two different targeted therapies, recently released by the FDA, each one after another. Finally, one worked, Tagrisso. It began killing cancer cells and he soon regained his lung function.
Treatment options for shortness of breath include medical interventions, environmental changes, breathing techniques, and exercises to improve breathing. Be sure to read my next post to learn more about some solutions to shortness of breath. The link will go live when the post is published.
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In 2012 doctors diagnosed my husband, Dan, with stage IV lung cancer. Since then, our family has been learning what it means to face cancer. I’ve focused my writing and speaking on helping cancer patients and their families advocate for themselves and live life to the fullest, in spite of their illness. My goal is to help people face cancer with grace.
My book Facing Cancer as a Friend: How to Support Someone Who Has Cancer, is available on Amazon.com
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I also blog at Heather Erickson Author/Writer/Speaker
1 Virtual Medical Center, Breathlessness in Cancer; https://www.myvmc.com/symptoms/breathlessness-in-cancer/
2 lymphangitic carcinomatosis (LIM-fan-JIH-tik KAR-sih-NOH-muh-TOH-sis) A condition in which cancer cells spread from the original (primary) tumor and invade lymph vessels (thin tubes that carry lymph and white blood cells through the body’s lymph system). The invaded lymph vessels then fill up with cancer cells and become blocked. Although lymphangitic carcinomatosis can occur anywhere in the body, it commonly happens in the lungs. It can happen in many types of cancer but is most common in breast, lung, colon, stomach, pancreatic, and prostate cancer. Also called carcinomatous lymphangitis. (NCI Dictionary of Cancer Terms)