What No One Tells You
What you think you know about lung cancer is a drop in the bucket compared with the uncertainty you may face once you, or someone near to you, has been diagnosed with the disease. Ashley Stringer knows from experience.
Stringer, a compliance manager for a municipal power company in Edmonds, OK, knew a little about cancer just from being around friends and relatives who had it. But about 3 years ago, she was diagnosed, out of the blue, with lung cancer. She was 34 at the time, with a husband and two young children.
“When I heard those words, it was pretty earth-shattering. There were a lot of emotions, and it was immediate,” Stringer says. “‘I don’t want to die. This isn’t supposed to happen. I’m too young for this. This happens to old people, right?’ It was just complete shock and fear — a lot of fear and anxiety.”
The deluge of questions came soon after. It didn’t take long for Stringer to find out that there are some things about lung cancer that people may not tell you. Here’s what to know about the disease.
A Diagnosis Is Not a Death Sentence
More than half a million Americans living today have been diagnosed with lung cancer at some point in their lives. And the first question they have, when they learn of their condition, is always the same.
“They want to know whether they’re going to die or not,” says David Tom Cooke, MD, the head of general thoracic surgery at UC Davis Health in Sacramento, CA, and a spokesperson for the American Lung Association. “Most people don’t know much about lung cancer. But it’s the No. 1 cancer killer for both men and women. It kills more folks than prostate, breast, and colon cancer. Yet we all know the color of the breast cancer ribbon, we all know the color of the prostate cancer ribbon, and colon cancer, we know. Lung cancer, even though it’s more deadly, is not part of our collective consciousness.”
But Cooke quickly points out: A diagnosis is not a death sentence.
“If it’s in stage I, II, or IIIa, the expectation is to attempt a cure,” he says. “If you’re at stage IIIb or IV, the expectation is not for a cure, but the expectation is to try to attain remission; we think the tumor will come back, but we want to go as long as we can without seeing it.
“But for the majority of patients that we see, our goal is to try to cure, whether that’s with surgery, whether that’s with surgery in combination with other systemic therapies and novel drugs, or whether that’s focusing on radiation. … Our goal is to try to cure.”
Lung Cancer Has a Bad Rep
One reason that lung cancer — the most common cancer worldwide — isn’t as recognized as other cancers is the idea that it’s a smoker’s disease and thus something you bring on yourself. It’s true in the sense that men who smoke are 23 times more likely to develop lung cancer, and female smokers 13 times more likely than those who never smoke.
But it’s not only a smoker’s disease. About 9% of men with lung cancer are nonsmokers. It’s 19% for women.
“There’s such a stigma with it,” says Jamie Rippy, 35, a never-smoker from Castle Rock, CO, who was diagnosed in February 2018. “‘Oh, lung cancer. They smoke. They deserve their disease.’ That was a surprise to me.”
You Have to Learn Patience
Even if you catch it early, there’s no quick, one-size-fits-all fix for lung cancer. So be prepared.
“A lot of times, developing a treatment plan is going to take some time — bloodwork, biopsies, scans,” Stringer says. “It’s so dependent on the person. You learn to live with it. I live in 3-month intervals. I live from scan to scan.”
The road can be long and exhausting. Rippy had a lobectomy — surgery to take out part of her lung — when she was 32. A week later, surgeons went back in to remove more.
She’s now cancer-free. But getting there was difficult, for her body and for her mind.
“You just don’t know, exactly, what it’s going to be like,” Rippy says. “Maybe a couple weeks after my surgery, my husband took me on a walk to the end of our block, and I was in tears because it was so hard to breathe. I was like, ‘Oh my gosh, is this my new life?’ It gets better very quickly. But it was really, really hard in those first couple of weeks.”
But Patience Is Only Good to a Point
Ask questions. Do your research. Read whatever you can. Figure out what’s good information and what’s not. Badger your doctor. As the saying goes, knowledge is power.
“We talk about ‘Dr. Google.’ Some doctors are reluctant to engage patients who have gone on the internet,” Cooke says. “But I encourage patients to become more activated and more educated. There are great websites to help them do that. As they read, and many people come to my clinic prepared, it makes our conversations easier and really helps to get our patients to undergo standard of care and even clinical trials.”
Cooke points to sites like the American Lung Association (lung.org), the National Cancer Institute (cancer.gov), and the American Cancer Society (cancer.org) as good places to start. Those and others will help you be prepared to ask your doctor questions, like:
- What tests do I need?
- What are my treatment choices? What are your standards of care?
- Should I get a second opinion?
- Should I try a better-known clinic out of state for my treatments?
- What are the side effects of different treatments?
- What are the chances of a cure?
- Do I need to think about clinical trials? Where? How? What are the benefits?
- How do I reach you if I need you in an emergency?
“I think it’s incredibly important to do your own research. It makes me feel like I’m being empowered and not just sitting on the sidelines, being told what to do,” Stringer says. “You have to be your own advocate, you really do, to get good treatment and to feel comfortable with the treatment you’re getting.
“At the end of the day, I want to be able to say that I did everything in my power to try to beat this.”
You Might Feel Alone, but You’re Not
Rippy, a Realtor in Colorado, is a former college swimmer. She’s always been fit and active. So when doctors almost stumbled upon a tumor on the lower part of a lung, it hit hard.
“In the beginning, I just felt kind of super alone and … rare,” she says. “Until you get it, you don’t realize how many people have it or have had it, or their mom had it or whatever.
“I think that was, for lack of better wording, almost comforting. You don’t feel so alone anymore because so many people have been affected by lung cancer. It’s like when you buy that new car, and then you see that car everywhere.”
Lung Cancer Will Mess With Your Head
Depression, fear, anxiety. People who have lung cancer, and their loved ones, all wrestle with those feelings. Everybody struggles to find ways to combat them.
Rippy has found help through a psychologist. Stringer, now dealing with a relapse, uses a journal to record what she’s been through and how she’s doing. “Being depressed or scared about your diagnosis is understandable and is to be expected,” Cooke says. “One should not be ashamed.”
Support groups, locally and online, are an important source to help those with lung cancer connect with others with the disease. Stringer, like Rippy, is a member of the American Lung Association’s LUNG FORCE Heroes. She’s been talking with a woman in Pennsylvania, someone she had never met before, for 2 years.
“She’s been so supportive because she knows what I’m going through. She’s walked the journey; she’s fought the battle; she knows the emotions, the struggles, the trials, the ups and downs. She really understands,” Stringer says. “People can listen. Anyone can listen. But until you’ve walked a mile in my shoes, it’s really hard for another person to fully comprehend.”