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Reasons Why Coping With Lung Cancer May Be Harder Than Breast Cancer

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10 Reasons Coping with Lung Cancer May be Harder Than Breast Cancer
Is it harder for a woman (or man) to cope with lung cancer than to cope with breast cancer?

Certainly, this question is unfair—it's hard to cope with any kind of cancer, and some people with breast cancer face much more of a challenge than some people face with lung cancer. Yet I've seen and sensed something from a unique position as a combination physician/patient and breast cancer survivor/lung cancer advocate that needs to be given a voice.

It's my hope that sharing disparities I've noted living amidst both the breast cancer and lung cancer communities will accomplish a few things. First, that witnessing these differences will raise awareness that will help family and friends, medical professionals and the public see the unique challenges and heartache experienced by those with lung cancer. Secondly, that those living with lung cancer will know that they have been heard and feel less alone. We understand why a room full of pink can reduce someone to tears.

But before listing some of these differences, I want everyone to see the real face of lung cancer. Someone with lung cancer could be your mother or sister, your niece or your daughter. Anyone with lungs can get lung cancer.

Lung cancer is not a "smoker's disease" and in fact, the majority of people diagnosed with lung cancer today are non-smokers (either former smokers or never smokers). Certainly, smoking contributes to many cases of lung cancer, just as a poor diet and lack of exercise contribute to other cancers. In the United States, 20 percent of women who develop lung cancer have never smoked a single cigarette, and in fact, lung cancer among young, never-smoking women is increasing. Worldwide, 50 percent of women with lung cancer have never smoked.

Take a moment before reading on to picture yourself in a few scenarios. First, as someone who has not smoked but is diagnosed with lung cancer. How does it feel? What do people say to you? Then, picture yourself as someone with breast cancer (for which obesity is a risk factor). Are people caring, or is the first thing they say, "How long were you fat?" Picture yourself as a woman or man with colon cancer (for which a risk factor is being sedentary). How do people respond? Do they give you a condescending look and ask you, "Don't you wish you had stopped being sedentary sooner?" Try to keep an open mind as you think through the following pages. You may be the one to bring hope to the next person you meet with lung cancer.

Reason 1: The Stigma of Lung Cancer
A word picture is the best way of describing the stigma of lung cancer. What is the first thing many people say when they hear someone has lung cancer? "Did he smoke?" Or perhaps one of the other variants I've heard such as, "I didn't know Aunt Karen was a closet smoker," or "He must be sorry he didn't give up that habit sooner."

It isn't just the uneducated public. Some time ago I was hanging out with a friend while attending a cancer conference in New York City. Another friend of mine—an oncology psychiatrist and a fellow breast cancer survivor—walked  up to us in a restaurant. I introduced my psychiatrist friend to the friend I was eating with, a woman in her 30's living with lung cancer. Having been the recipient of my psychiatrist friend's love and compassion, I was shocked when said friend turned to my lunching lung cancer friend and immediately asked her "how long did you smoke?" I can't remember the conversation after that point, other than to again realize I needed to do something to lower the chance that this same conversation would occur between other people at other times and in other places. I went to sleep with tears for both of these friends that night—one for how much harder it is to cope with her kind of cancer, and the other for her ignorance (and knowing, being likewise human, that I must show hurtful ignorance in other settings of which I'm unaware).

Another conversation I had with a fellow physician revealed again how the stigma is pervasive. On a flight to a lung cancer event, I happened to be seated next to another physician. After introducing ourselves, during which this fellow physician heard my excitement about the event he commented, "I hope you tell those people not to smoke." It was time for a little education, a discussion which probably left this man a little leary of initiating conversations on his next flight, but which was very necessary. He was shocked to hear that the majority of people are non-smokers at the time of a lung cancer diagnosis, and even more surprised to learn that 5 months following a diagnosis, only 14 percent of people with lung cancer smoke.

The stigma goes beyond smoking, though, to the disease itself. Lung cancer not only has the stigma of being a smoker's disease but of being almost universally fatal. People with lung cancer can expect not only comments such as "How long did you smoke" but remarks such as "my uncle had lung cancer and he died in just a few months."

Not only do hurting words and comments cause emotional pain, but the stigma of lung cancer can affect survival. Studies have found that lung cancer patients are less likely than breast cancer patients to be referred for therapies that may increase life expectancy.

How is the stigma different for women (and men since men can get breast cancer too) with breast cancer? I don't remember anyone asking me if I had been overweight in the past and then dieted (I wasn't). I don't remember anyone suggesting I should have started having children at a younger age, or that I should have had more children. I didn't have any friends look through my cupboards in search of potential carcinogens. Nobody questioned me as to whether or not I ever used birth control pills or fertility drugs. In essence, nobody responded to my diagnosis with questions as to the cause, but only as caring people with a desire to help.

People with lung cancer don't need us to be epidemiologists intent on identifying the causes of cancer  They simply need our love, our support and encouragement, and the best medical care possible. Check out these ideas on what not to say to someone with lung cancer.  And for those living with lung cancer, here are some ideas on coping with insensitive comments during lung cancer treatment.

Reason 2—There is Less Support With Lung Cancer

 There is less support for lung cancer than breast cancer. Istockphoto.com/Stock Photo©digital storm
I once wrote a blog talking about the difference between the number of supporters for breast cancer versus that for lung cancer, and the great need for more lung cancer support. One breast cancer survivor made the comment, "If people with lung cancer stepped up to the plate like breast cancer survivors do they'd have plenty of support. If women with lung cancer banded together like those of us with breast cancer, there wouldn't be a problem." Feeling humiliated to be among said group of breast cancer survivors, I commented back: "To walk and run or even knit for lung cancer you need to have lungs and you need to live."

Even without the stigma, there are simply fewer lung cancer survivors around to raise awareness. As of January 1, 2014 among women there were 3,951,930 female breast cancer survivors in the United States versus only 289,400 female lung cancer survivors. Out of all female cancer survivors in the United States that year, 40 percent were breast cancer survivors compared to only 3 percent being lung cancer survivors.

What does this mean? Those of us with healthy lungs without lung cancer need to step in, and hopefully more breast cancer survivors will join our small group of breast cancer surviving lung cancer advocates. Likewise, it's time we start recognizing people with all types of cancer.

How does this disparity in support affect people living with lung cancer? With pink ribbons adorning everything from toilet paper to food processors, it can be lonely to live with cancers other than breast cancer. There are also fewer resources and support people around for those with lung cancer.

How can we change this? If you are living with lung cancer, connect with one of the lung cancer organizations such as LUNGevity or Lung Cancer Alliance, and/or join an online lung cancer support community. I've talked to many people at seminars such as the LUNGevity Hope summit who have come to see their fellow lung cancer survivors as family. If you are not a cancer survivor, connect with one of these organizations as an advocate. If you are breast cancer survivor, see if there isn't a way to spread out and share your good fortune of generous support.

Think of creative ways to support people with lung cancer. During one of my chemotherapy sessions, I had 5 separate sets of breast cancer volunteers visit me, offering me everything from jewelry to hand massages. I spoke with my infusion nurse, and at the onset of my next session, we had a plan. My nurse located lung cancer survivors receiving chemo at the same time, and as volunteers stopped by, we asked them to offer support to lung cancer survivors instead. Due to confidentiality, of course, I did not know who these people were, but my nurse remarked at how grateful the survivors were for the support, as she said most lung cancer survivors do not have volunteers visit.

Reason 3—The Survival Rate is Lower for Lung Cancer

As can be deduced from the last slide comparing the number of lung cancer vs breast cancer survivors, there is a major difference in the survival rate of the 2 diseases. The overall 5-year survival rate for breast cancer is 89 percent; for lung cancer, this just rose to 17 percent.

Why is this survival difference so great? There are several reasons, but it doesn't mean that lung cancer is harder to treat than breast cancer.

One factor is that lung cancer is often diagnosed in the later stages of the disease (at least partially due to lack of an effective widespread screening tool). The survival rates for different stages of lung cancer differ greatly, with the average 5-year survival from stage 1 disease being 45-50 percent and from stage 4 being roughly 1 percent.

Another reason is the lack of research due to less funding; a lack of funding which in turn has origins in the stigma and lack of awareness.

It goes without saying that private funding for breast cancer is vastly greater than that for lung cancer. Most people are familiar with the organization Susan G. Koman which has raised 2.8 billion for breast cancer, but the name of organizations specifically designed for lung cancer are not on most people's tongues. I've been offered pink lemonade to support breast cancer research on cross-country flights, but never white sprite. I've watched football players in pink, but only in the recent past, thanks to Chris Draft and the Team Draft Family Foundation, have I seen pigskin carriers offer up support for lung cancer.

An American Cancer Society review of current grants as of August 1, 2015, finds 198 grants for breast cancer with a funding amount of $110,303,170 relative to 97 grants for lung cancer research totaling $51,237,624.

Federal spending is also much lower for lung cancer than breast cancer. In 2012, federal research funding for breast cancer amounted to $26,398 per life lost, versus only $1,442 for lung cancer.

Lack of research and funding affects not only survival rates but quality of life for those living with cancer. Most studies on survivorship issues ranging from coping with the fear of recurrence or progression to the possible role of yoga in cancer treatment have been done with people with breast cancer.

I have often wondered what the survival rate would be for lung cancer if the same amount of research into screening and treatment had been done for lung cancer as has been done for breast cancer.

Reason 4—Less Awareness About the Causes

If asked what causes lung cancer, most people would quickly say smoking. Yet what are the causes for the 20 percent of women in the United States and 50% of women worldwide who are lifelong never smokers?

If I told you that we knew of a simple test, followed by a minor procedure if needed, that could eliminate 50 percent of breast cancer deaths each year in the United States, I'm sure you would have done the test, or at least have it on your to-do list. If I told you the test could cost as little as 10 dollars and you could do it in your pajamas (easier than a mammogram) and if the test was abnormal there is nearly a 100% chance of permanently eliminating this cancer risk factor, well... If we had a test like this and you hadn't heard, the conspiracy theorists among you would go wild.

Guess what? There is a simple test (followed by a treatment costing less than a thousand dollars for those who have bad results) that could eliminate this number of cancer deaths and more each and every year.

In 2015 it's expected that around 40,290 women will die of breast cancer. It's also expected that 21,000 people will die from radon-induced lung cancer (the leading cause of lung cancer in non-smokers.) The test can cost as little as $10 at your local hardware store, and many regions provide free tests during the month of January (radon awareness month.

Keep in mind that elevated radon levels have been found in homes in all 50 states and around the world. Radon is a colorless, odorless gas, and the only way you can know if your home is affected is to test your home for radon. Even though some areas of the country have higher levels of radon than others, you still need to test. A case in point is our own home.  In 2013 we sold our old home which had a radon level less than 0.03. Purchasing a home not 2 miles away, we requested a radon level be checked along with the inspection. (Note: some places this is required and others it is not.) The level was returned, and it is easier to describe this is terms of relative risk rather than simply a number here. The lower bedrooms had levels equivalent to smoking 5 packages of cigarettes per day. Our hearts went out to the previous  homeowners—not that they were required to pay for radon mitigation which averages around $1200, but because their children had been exposed to these levels throughout their childhood.

We need to raise awareness about radon and the other known causes of lung cancer such as air pollution and occupational causes of lung cancer. Smoking cessation programs are great, but they will not do a thing to reduce radon-induced lung cancer. While they can save lives, these stop smoking programs give the public a false sense of security due one of the biggest lung cancer myths; you can prevent lung cancer by not smoking.

Reason 5—You Can’t Have Reconstructive Surgery for Lung Cancer

While again, any cancer is bad, women with breast cancer have options that those with lung cancer do not have.

People with lung cancer don't have the option of reconstructive surgery. I can talk about my bilateral mastectomy and reconstruction, but I have yet to hear a friend with lung cancer talk about her bilateral lung removal and reconstruction. I can say I had the option of increasing or decreasing my bra size, but my friends with lung cancer can't choose their lung volumes after treatment.

Certainly reconstruction is not a picnic, and personally I don't believe it really diffused the trauma of treatment to any degree. The difference is simply that there is an option—something  to direct our focus even for just a moment—that  is not available for those living with lung cancer.

Reason 6—Lack of a Screening Test for Everyone

Lung cancer is harder to detect in the early stages than lung cancer for a few reasons:

You can't do self-lung exams when you take a shower, look in the mirror, or even accidentally bump a lung lump as you are smoothing out your clothing. Certainly, many people have symptoms that alert them to the presence of a lung cancer, but these may not occur until a lung cancer has spread.

There isn't a screening test for lung cancer that is available for everyone as there is for breast cancer.  Of course, screening mammography isn't perfect, but research has resulted in other options, such as the use of MRI exams to screen people at a high risk of developing the disease.

The only test currently available for lung cancer screening is low dose CT screening. In the past chest x-rays were often recommended for people at risk, but it's been found that checking these does not save lives. It doesn't usually detect lung cancer at an early enough stage to make a difference in survival. Low dose CT screening for lung cancer is also limited. It is currently recommended for people between the ages of 55 and 80, who have smoked at least 30 pack-years, and continue to smoke or have quit in the past 15 years. These are guidelines, but evaluating other risk factors for lung cancer, you and your doctor may consider screening outside of these guidelines. Unfortunately, this is not an option for young, never smoking women—the  group in which lung cancer is increasing the most.

Less is known about genetic testing for lung cancer than for breast cancer. As with breast cancer, there are some people who are predisposed to lung cancer due to a family history. We hear a lot about the BRCA1 and BRCA2 gene mutations and talk about who should be tested. (BRCA2 mutations are found in roughly 2 percent of people of European ancestry.) Less research has been done, but we now know that women who carry a BRCA2 gene mutation not only have an increased risk of developing breast and ovarian cancers but who women smoke and have the BRCA2 mutation are twice as likely to develop lung cancer.

Reason 7—Lung Cancer is More Often Diagnosed in Later Stages

Lack of a screening test for everyone (and not being able to "feel" your lungs), along with a lack of awareness of early symptoms of lung cancer, means that lung cancer is more often diagnosed in the later stages of the disease than is breast cancer.

What many people don't realize, is that lung cancer due to causes other than smoking is often diagnosed when it is more advanced than are lung cancers related to smoking. In the past, cancers such as small cell lung cancer and squamous non-small cell lung cancer—cancers linked more strongly with smoking—were more common. These cancers occur more often in the large airways (the first place for tobacco smoke to hit) and tend to have symptoms earlier, such as coughing up blood, a persistent cough, and airway obstruction.

Now, lung adenocarcinoma (a form of non-small cell lung cancer) is the most common type of lung cancer. This is the most common type of lung cancer found in never-smokers, women, and young adults with lung cancer, and tends to occur in the outer regions of the lungs (the periphery). Because of its location, it's not usually diagnosed until people have symptoms of more advanced cancer, such as weight loss, shortness of breath, and fatigue.

Reason 8—The Lung Cancer Ribbon is Invisible

If I were to ask 100 people what color the breast cancer ribbon is, it wouldn't surprise me if all 100 knew the answer is pink. But if were to ask the same group," what color is the lung cancer ribbon? It's likely the number of incorrect responses would outnumber the correct.

Not only is the white or pearl lung cancer ribbon less recognized than the breast cancer ribbon, but figuratively, many people with lung cancer feel invisible as well.

The reason for this comes down to topics mentioned earlier—lack  of awareness, lack of support, and the stigma—but each of us can make a difference. I have a tendency to wear white ribbons when I am out and about, and welcome the opportunity for people to ask questions. And they do. It's a great chance to say "yes, I'm a breast cancer survivor, but I advocate for people with lung cancer," and then follow through with important facts everyone should know. For example, that there are more non-smoking women (never smokers and former smokers) that die from lung cancer each year than there are women (non-smokers and smokers alike) who die from breast cancer, and even if someone is a lifelong heavy smoker, they need love and compassion.  I admit that as a survivor I'm incredibly grateful for all of the awareness, research, and funding surrounding breast cancer, but it's time for lung cancer to be given the same consideration.

I know that it's not only people with lung cancer who feel they are sailing solo in a sea of pink. Do you know the colors and meaning of other cancer ribbons?

Reason 9—Fewer Freebies for Lung Cancer Patients

 There are more freebies for breast cancer than other cancers. Istockphoto.com/Stock Photo©ronstik
When it comes to free gifts for cancer, breast cancer wins hands down. From bracelets to phone apps to retreats, some of the best things are indeed free when you are coping with the disease.

Not to say that's bad. It's wonderful! It's just time to honor people with other types of cancer as well. Why is this a big enough difference to include in this list? I"ll give you a personal example.

I was fortunate enough as a breast cancer survivor to be chosen to attend a Casting for Recovery Retreat free fly fishing adventure, and I can't begin to share how empowering this was (like the best mini-vacation and best support group combined). With the financial constraints of cancer, on top of the responsibilities of being a parent, we often devote what free time and money we have to others. These "freebies" (they are not really free but instead provided by very generous donations from loving people) are not just a way to honor those coping with cancer, but a way of reminding people they are still important in ways that go beyond recent lab tests and daily chores.

Thankfully, there are some free things for lung cancer patients, ranging from free head covers, to totes, to retreats.

Reason 10—Lung Cancer is Less Sexy

Let's face it, we live in a culture where sex sells. Isn't it said that anything that talks about sex or diet will be gobbled up by consumers?

Viewing a woman without breasts certainly wouldn't be considered sexy. Yet somehow creative marketing has turned breast cancer into a "sexy" disease.

Perhaps it is the option of reconstruction, or, as one fellow breast cancer survivor says "getting breast augmentation the hard way." Maybe it is the new liberty people feel in talking about breasts. Whatever it is, perhaps those of us involved in lung cancer awareness can take this angle as well. Start with "We Need to Look Beneath the Breasts" and brainstorm on. I would love to hear your ideas, as would many who are trying to change the face of lung cancer.

How You Can Help People Cope with Lung Cancer?

 How can you support someone with lung cancer?. Istockphoto.com/Stock Photo©Ocskaymark
There are several ways you can help those you care about who are living with lung cancer. Here are a few ideas:

Support: My heart broke when one lung cancer survivor told me she wished she had breast cancer instead, because she would get more support from her family. At a cancer gathering I attended I jotted down a summary of what people with lung cancer were telling me they needed from friends and loved ones:

"See me. Acknowledge me. Hear me. Don't blame me. Just love me."

Everyone with lung cancer, whether a never smoker or a current 3 pack-a-day smoker, deserves our love, our compassion, and our care. Consider doing a reality check to see if you would in any way treat your loved one differently if she had breast cancer instead of lung cancer.

Learn: Learn about the causes and risk factors for lung cancer. If you think you or your loved ones aren't at risk because you don't smoke, think again. If you hear that lung cancer is decreasing because fewer people smoke, again think again. For one group of people, lung cancer has been increasing significantly in the United States: young, never smoking women.

Educate: The public needs to see a different face of lung cancer, the real face, as anyone with lungs cancer get lung cancer. Women get lung cancer. Non-smokers get lung cancer.  Young adults get lung cancer.

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