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5 Things No One Tells You About Living With Lung Cancer

Self logo Self 11/1/2019 Carolyn L. Todd
© z_wei / Getty Images

Given that lung cancer is the second most commonly diagnosed cancer in the United States, you’d think we’d talk about it more. While you might see stories (like this one) about the condition around this time of year since November is Lung Cancer Awareness Month, there are so many people living with lung cancer every month out of the year and every day of their lives.

To shine a light on that experience, we spoke with three people about what living with lung cancer has really been like for them. Here’s what they want you to know, whether you’re newly diagnosed, know someone who was just diagnosed, or are curious about life with the disease.

1. So many people are going to ask you if you smoked.

It shouldn’t be this way, but the first reaction you get when you tell people you have lung cancer is probably going to be mixed. You’ll likely get the same “I’m so sorry” you’d get from telling people you had, say, breast cancer. But that sympathetic response is often followed by some version of, “Did you smoke?”

Gina Hollenbeck, 42, who was diagnosed with stage 4 lung cancer in 2015, tells SELF she got this question relentlessly. Elizabeth Moir, 30, who was diagnosed with stage 4 lung cancer last May, tells SELF she has also gotten this question from countless people.

People who ask this question probably think it’s fair, given that smoking is the single biggest risk factor for lung cancer. Still, the question can be intrusive, not to mention irrelevant.

Elizabeth, who never smoked, found the question annoying and tiresome, but she wasn’t offended by it. “I knew to expect it for some reason, maybe because [before my diagnosis] I thought it was a smoker’s disease too,” Elizabeth says. Her strategy was to answer with a little dark humor. “My response ... was, ‘No. But I guess I should have!’” she says. “People didn't really know how to respond. [But] I had to find some humor in the gravity of the situation, and that was my way.”

Gina, who also didn’t smoke, had a very different response. To her, the question felt insensitive and almost accusatory. “It’s like [people were asking me], ‘Did you do something to deserve it?’” Gina explains. Instead of getting angry, she started using that moment as “an opportunity to really educate people that lung cancer is not just a smoker’s disease,” she says.

2. If you did smoke, you might be tempted to blame yourself.

When Donna Fernandez, 66, was diagnosed with stage 4 lung cancer in 2012, she immediately thought, “Well, I smoked!” She’d started smoking when she was 16, she tells SELF. It was 1969, and smoking was much more common. (This is the case for so many other people fighting lung cancer today.) Although the science on the harms of smoking existed at that time, the strong public awareness of these health risks and cultural norms against smoking that we have today did not.

For most of Donna’s adult life, she was “a pretty heavy smoker,” she says. Then, about five years before her diagnosis, Donna quit, motivated by her passion for having her dogs compete in agility events. “Hardly anyone in the agility world smokes,” she says. “Every time I started wanting a smoke, I told myself I either had enough money to smoke or enough money to do agility, but I didn't have enough money to do both.” Looking back, Donna isn’t proud she was a smoker. “But I am proud of the fact that I quit,” she adds, “because that was the toughest thing I’d ever done.”

Even though Donna’s smoking was a lung cancer risk factor, her family history may have factored into it, too. Her father, also a smoker, died of lung adenocarcinoma, Donna’s exact kind of cancer, at only 49. (There may be a genetic component to some types of adenocarcinoma.)

Now, Donna tries not to beat herself up over something she can’t know for sure—or change. As she puts it, “The truth is, my smoking may have caused my lung cancer. My family history may have caused my lung cancer. I might just be an unlucky individual who happened to have lung cancer.” Or it may be some combination of all three.

Regardless of the cause(s) of someone’s lung cancer, whether or not they smoked is almost beside the point. “Nobody deserves lung cancer,” Gina says. “Even if you smoked every day, and even if you knew the risk associated with that. We’ve all done risky things.”

3. The stigma surrounding lung cancer hurts smokers and non-smokers alike.

The notion that lung cancer is purely a smoker’s disease (and an elderly smoker’s disease at that) makes it easier for doctors to miss or misdiagnose the illness in people who are young, otherwise healthy, and don’t smoke.

Before her diagnosis, Gina never smoked, was a nurse who worked out and ate well, and was overall “the picture of perfect health,” she says. When she went to the doctor for a nagging cough, she was first diagnosed with allergies, then gastric reflux. Two months later, still coughing and unable to convince doctors she needed a chest X-ray (so it would be covered by insurance), she finally decided to just pay for one.

The radiologist told her something was very wrong and she needed to see a pulmonologist that day. But when she called to make an appointment, there was a two-month wait, she explains. “I tried to convince them it was an emergency, but they said, ‘You are 38 and a non-smoker … if you think it's an emergency, then you need to go to the emergency room. And I did.” Thankfully, the ER doctor took her seriously. She got a CT scan, had a biopsy the next day, and got the news a week later.

“It made me angry to think they could have caught it before it became stage 4,” Gina says. “I knew something was wrong for months [but] I felt like no one would take me seriously.”

As people with lung cancer get to know each other, they often recognize that the commonalities in their pain and fight supersede different smoking histories.

Never-smokers, like Gina, can put themselves in the shoes of former or current smokers. “I do have a lot of empathy for people who are [or were] smokers and get lung cancer, because I think so many of them think, ‘Well, I brought it on myself,’ so I’m not even going to try [treatment],” Gina says, speaking from her experience getting to know other survivors. “I still want to fight and advocate for my friends with lung cancer who smoked. We all deserve that.”

Then there are smokers and former smokers who become advocates on behalf of those who never (or practically never) smoked. Almost all of the many wonderful friends Donna has made attending conferences and advocacy events weren’t smokers, she says. She has witnessed firsthand how horribly the misconception that lung cancer exclusively impacts smokers can hurt people like this. “I know some people who lost their lives pretty quickly because they were being treated for everything under the sun but lung cancer,” Donna says. But, as she points out, “It just takes lungs to have lung cancer.”

4. People can show up for you in surprising ways.

Before Gina was diagnosed, she was feeling a little disillusioned with humans in general. “I was at a point in my life where I was like, ‘Gosh, everybody in this world is so selfish!’ What’s so interesting is that after I got this disease, people were just so kind, and they didn't have to be,” Gina says. “So many people just came out of the woodwork, it was humbling … It really restored my faith in humanity.”

For instance, when Gina’s health insurance wouldn’t cover the first targeted chemo drug she tried, kids in her neighborhood pitched in money to help her afford it. Her tennis partner put on a fundraising tournament. When she got so sick she couldn’t put up her family’s Christmas tree, neighbors volunteered to do it. Somebody even started a GoFundMe for her.

Right after Gina’s brain surgery to remove a tumor after her cancer metastasized, another tennis friend helped out in a particularly tender way. This was someone Gina had played matches with and gotten lunch with but wasn’t particularly close with. “She had never even been in my house before,” Gina says. But Gina’s husband was away, and she couldn’t wash her hair by herself with the stitches from the surgery. “This woman came over and she helped me wash my hair in the sink and helped me really get it clean. That meant so much to me,” Gina remembers. “Then I felt really [sick] afterward, and I was like, ‘I’m so sorry, but I need to go lie down.’ So she came and lay in my bed beside me while I fell asleep. She just stayed, and that meant the world to me.”

Elizabeth too was absolutely overwhelmed by the number of people who showed up to help unasked, including many she never expected to. “People that I haven’t talked to in 10 years reached out to me,” Elizabeth says. “Girls that I went to high school with … let me know that I’m in their thoughts and prayers.”

This past summer, Elizabeth’s high school basketball team held a car wash fundraiser in her honor to help pay for house cleaning services. She also heard from every single one of the people on her college basketball team even though she’d transferred after her sophomore year. Most of them continue to check on her, and she gets thoughtful texts from her college basketball coach and his wife on a weekly basis.

“I know that no matter what, we will be well taken care of as we navigate this new life we have,” she says, referring to herself, her husband, and their two kids. “It hasn’t been easy, but the support—monetary, emotional, physical—hasn’t gone unnoticed.”

5. Having lung cancer means living with a degree of uncertainty.

While everyone’s lung cancer story looks different, it is rarely simple and straightforward. When it comes to things like how you will respond to a given treatment or how long you will live, “The truth is that a lot of times, the answer is ‘We don’t know,’” Gina has learned. “[The doctors] are making their best judgment,” she adds. “But you won’t always have a clear plan … I wish somebody had told me it’s okay to not know the answer. The truth is this is a long journey,” says Gina—one that winds through uncharted territory and can unexpectedly change course all the time.

Soon after Gina’s diagnosis in 2015, one doctor told her she had 10 months to live. Since then, she has undergone surgeries to remove her left lung and a tumor on her brain. She has been treated with various targeted chemotherapy drugs that worked for a period, the last of which she is currently still on. There is a very small tumor in her brain that doctors are watching. “I feel good enough to do all of the things I love,” Gina says.

Like Gina, Elizabeth had to have a brain operation to remove a tumor, which she learned of just eight days after her diagnosis. She has been on a targeted chemotherapy drug since then, and her most recent scan showed no evidence of disease. But at not even six months post-diagnosis, sometimes it feels like the shock of the whole thing has barely worn off. “There are days that it’s still very surreal to me,” she says. “I am grateful for every single day.”

Donna was told she had four months to live after diagnosis. But she did well on traditional chemo for about seven months. Then, with her cancer returning every time she stopped chemo, Donna joined a clinical trial for an immunotherapy drug in 2013. She didn’t expect the treatment to work for her. “At that point, I thought I was being altruistic, to tell you the truth,” she says. “I thought it would help people coming up behind me.”

But it’s helping her, too. Donna still has tumors, but they are stable. She just celebrated making it to seven years post-diagnosis. Through all the ups and downs, Donna has been clear on the fact that she can’t put her life on hold in the face of uncertainty. “[You] just keep on living while you can. I live with this every day, but truthfully I never let the lung cancer control my life,” she says. “I hear people talk about new normals all the time, and I suppose I do have a new normal.” Right now? “I feel very lucky and blessed that I’m still here,” she says.


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