We cannot think of a better way to kick of Lung Cancer Awareness Month 2016 than with this excellent Q&A with a leader in the movement - and our friend - Bonnie Addario. Please read this inspirational and informative interview from Genentech: https://www.gene.com/stories/qa-bonnie-j-addario
This article originally appeared at PschologyToday.com on July 26th, 2016.
How does the stigma surrounding lung cancer delay diagnosis?
by Theodora Ross, M.D., PhD.
Earlier this year, I appeared on NPR’s Fresh Air to discuss my recent book, A Cancer in the Family. During the interview, the conversation turned to ways individuals can reduce their risk for cancer. To make a point, I compared acting on knowledge of one’s genetic risk to smoking: “If you stop smoking or you don’t smoke,” I said, “the chances are you won’t get lung cancer.”
Not long after, I received an email from a stranger with a subject line referencing the interview. The sender was a 43-year-old woman from California named Lisa who, despite never smoking or living with smokers, had been diagnosed with advanced-stage lung cancer at age 41. “I have never smoked a single cigarette,” she wrote. “I have never lived or worked with smokers. I have no other *known* risk factors for lung cancer either.” She told me she emphasized the word “known” due to the fact that little research has been done on non-smoking related causes of lung cancer.
“I realize,” Lisa continued, “that your reference to smoking and lung cancer was just an off-hand remark and not the main point of your interview. However, lung cancer receives the least research funding of all the major cancers and has one of the poorest survival rates, due in large part to the stigma that statements, even casual ones like yours, perpetuate.”
I replied with a lengthy apology for generalizing without providing context. But Lisa’s words echoed. Just hours before I had received that email, a colleague and I had been lamenting that if we could eliminate all incidents of cancer caused by lifestyle choices (many due to smoking), we’d have far fewer cancer cases today. This would leave time to study cancers with unknown causes, which would lead to better and faster diagnoses. And it would help end the stigma surrounding patients like Lisa—a stigma that I had inadvertently perpetuated on a national radio program.
The stigmas and stereotypes around lung cancer need to be erased
In 1964, when the first US Surgeon General’s Report on the health consequences of Smoking was published, 45 percent of adults smoked cigarettes despite stacks of evidence indicating that cigarettes caused lung and many other cancers. The year before, smoking in America had reached an all-time high thanks in large part to mass-market advertising campaigns during the previous few decades that falsely promoted smoking as a glamorous, even healthful, activity.
In 2014, fifty years after that first Surgeon General’s Report, smoking has been identified as a leading cause of twenty-two diseases. Heart disease, which kills more people in the United States each year than any other illness, is at the top of the list. Many other organs dysfunction as a result of cigarettes and of course several cancers other than lung cancer are linked to cigarette smoking. Despite this, lung cancer has been singled out as the “smoker’s disease,” when in fact, it is one of many smoker’s diseases.
Unfortunately, this fact leads to a stigma surrounding lung cancer patients—non-smokers and smokers alike—since people assume they could have prevented their disease. For non-smokers like Lisa, this can be an especially surprising twist to an already difficult diagnosis, even though there are many other patients like her. Currently, approximately 20 percent of lung cancer diagnoses in America (about 16,000-24,000 per year) occur in people who have never used tobacco products, and that fraction is on the rise, especially as smoking becomes less popular. (At present, only 15 percent of Americans smoke.) Additionally, many of the remaining 80 percent of lung cancer diagnoses are in former smokers, those who quit years or even decades before their diagnosis. Unfortunately, though, the stigma persists, and it can lead to devastating, even deadly, consequences.
The problem of delayed diagnosis
A close cousin of the stigma is the stereotype, wherein people make assumptions about someone or something based on preconceived, often incorrect, notions about others like them.
Consider Lisa’s scenario: In the Fall of 2013, when she was 40 years old, she went to her doctor reporting fatigue and a cough that wouldn’t go away. Lisa was a fitness instructor, had never smoked, and had eaten a healthy diet for decades. The doctor never considered lung cancer a possibility, and prescribed codeine cough syrup. When the cough did not abate, Lisa returned to the doctor, who then prescribed an albuterol inhaler and antibiotics. Still, the cough persisted, and Lisa even began coughing up small amounts of blood. The doctor upped the prescription to steroids, gave her an Advair inhaler and then prednisone. The cough continued, and while she was on a family vacation, Lisa worsened and went to the local ER for a chest x-ray. She was told she had pneumonia. At this point, a family doctor/friend advised her to visit a pulmonologist. The pulmonologist obtained a chest CT, and Lisa had lung biopsy the following week. In January 2014, after months of misdiagnosis, she was finally diagnosed with Stage IV lung cancer, which has a survival rate of less than 10 percent. The situation was so dire that Lisa was offered “palliative” chemotherapy less than 48 hours after her diagnosis.
If Lisa had smoked, her doctor would have known she was high risk and therefore likely ordered a CT scan sooner. But because her medical history did not align with the common perception of who a lung cancer patient is, her diagnosis came late. If we can catch lung cancer early enough for surgery, then we can cure patients. Delayed diagnosis is injustice.
Lisa also has a significant family history of cancer (three grandparents and another close relative were all diagnosed with various types) but has not yet received a complete genetic test for inherited cancer gene mutations (those with which patients are born and that are found in all cells of the body, not just the tumor) that may show she is at risk for additional cancers. Patients with lung cancer are rarely sent for a genetic analysis even when, as in Lisa’s case, a genetic test is warranted based on National Comprehensive Cancer Network guidelines. Although, in this case, a test would not change her diagnosis, it could at least provide some much-sought answers about why she developed the disease.
Let’s break the stigma
Stigmas and stereotypes are lazy. They result from jumping to conclusions based on biases instead of facts, and they lead us into one-track thinking that prevents us from seeing the whole picture. Meanwhile, they wreak havoc on the lives of those who’ve been stigmatized, isolating them from their peers and rendering them the victims of prejudicial forces beyond their control.
After I received Lisa’s email, I thought of how, in 1939, my Uncle Jack changed our family name from Rosenblum to Ross in order to increase his chances of getting a job. By changing his name, he avoided the stigmas and stereotypes associated with Jewish people and allowed himself to be considered on an even playing field with all the other candidates. It was unfortunate that such a change was necessary, but he got the job.
Lung cancer patients can’t make this choice, so it is up to the rest of us to change our way of thinking in regard to the disease. Hopefully, one day soon people will quit cigarettes once and for all, and smoking-induced lung cancers will be a thing of the past. In addition to preventing suffering, this would allow researchers to dedicate more attention to other causes of lung cancer. In the meantime, let’s combat damaging stigmas and stereotypes by dealing in facts and choosing our words with care. When we do, we not only increase empathy, we save lives.
Note: Lisa Goldman, who contributed to this piece, writes about her journey with lung cancer at Every Breath I Take.
by Lynne Eldridge MD. Originally posted on 30 October 2015 at About.com.
Many of us have been upset recently as well-meaning organizations have made smoking cessation the focus of lung cancer awareness month. Certainly, encouraging the public to never begin, and to quit if they smoke, is admirable. And for people with lung cancer, quitting may improve survival. Yet lung cancer awareness month should have a different focus.
Spreading information on smoking cessation does little overall for those living with lung cancer today. Five months after receiving a diagnosis of lung cancer, only 14% of people with the disease are smokers. To focus on smoking is analogous to making breast cancer awareness month all about informing women that they should have their first child before the age of 30 (to decrease the risk of breast cancer.) Awareness month should be about supporting people with the disease, not about discussing the causes.
Awareness month should also be about funding to research better treatments. Those who smoked in the past won't benefit from a lecture about what they may have done differently 20 years ago. Instead, they need treatment today. And for never smokers with the disease--not uncommon considering lung cancer in never smokers is the 6th leading cause of cancer deaths in the U.S.--this focus makes a month designed to celebrate their lives irrelevant.
Some people may remain skeptical, but read on for further reasons why lung cancer awareness month should not have smoking cessation as the central focus.
The majority of people with lung cancer are non-smokers.
This heading is not a typo. The majority—roughly 60% of people—diagnosed with lung cancer are non-smokers. This includes people who smoked at some time in the past, as well as never smokers. In the United States 20% of women with lung cancer are never smokers, with that number rising to 50% of women with lung cancer worldwide.
Numbers such as 20% may seem small, until you take a look at the statistics.
Lung cancer is the leading cause of cancer deaths in both men and women in the United States. Lung cancer kills twice as many women as breast cancer, and 3 times as many men as prostate cancer.
And while around 30 to 40% of people smoke at the time of diagnosis, only 14% of people with lung cancer are smoking 5 months after diagnosis.
In other words, the vast majority of people with lung cancer today will not benefit from hearing about the hazards of smoking. Not only is this focus not helpful, but it serves to propagate the stigma of lung cancer as a smoker's disease. Unfortunately this vast majority, including most never smokers, have already been subjected to the blame game. Have breast cancer? Nice. People act loving and ask how they can help you. Have lung cancer? Raised eyebrows accompanied by some variation of the question,"How long did you smoke?"
There are many reasons that living with lung cancer can be harder than living with breast cancer. Let's not add cancer awareness month to the list.
There are Other Causes of Lung Cancer
There are many causes of lung cancer. Even if tobacco had never been introduced on the planet, we would still have lung cancer. Yes, smoking is the leading cause of lung cancer, but causes other than smoking are very important. Though the number seems small—20% of women who develop lung cancer being never smokers—this translates to a fifth of the 71,660 lung cancer deaths in women expected for 2015.
Radon exposure in the home is the second leading cause of lung cancer, and the number one cause of lung cancer in non-smokers.
Roughly 21,000 people die from radon-induced lung cancer each year, and this cause is entirely preventable. Picking up a radon test kit from the hardware store for around 10 bucks, and having radon mitigation done if the test is abnormal, is all that's needed.
Putting these numbers in perspective may help. Around 39,000 women are expected to die from breast cancer in 2015. If we had a $10 test to check for a risk factor, and a procedure costing less than a grand that could completely prevent half of breast cancer deaths, do you think we would have heard? Why doesn't the public know about this? It goes back to the focus of this article; we are placing the emphasis of lung cancer awareness on smoking, and in doing so, are leaving the public with a false sense of assurance that all's well if you don't smoke.
There are other causes worth mentioning, from air pollution, to indoor air pollution, to secondhand smoke, to occupational hazards. Don't assume you are safe if you never smoked.
Learn about the other causes of lung cancer in non-smokers and what you can do to reduce your risk.
People Who Have Quit Smoking Are Still at Risk
Quitting smoking certainly reduces the risk of lung cancer, but for most, some risk always remains. The numbers in the last slide attest to this. There are more former smokers who develop lung cancer each year than current smokers.
If you smoked in the past, don't fret yet. After 10 years of quitting, the risk of lung cancer decreases by 30 to 50%. There are also some ways of reducing your risk of dying from lung cancer.
One method is low dose CT lung cancer screening. While screening doesn't lower the chance that you will get lung cancer, it does increase the chance that if you develop lung cancer, it will be found in the earlier, more curable stages of the disease. It's thought that screening people at risk could reduce the mortality rate from lung cancer by 20% in the United States. Screening is currently recommended for people between the ages of 55 and 80, who have a 30 pack-year history of smoking, and continue to smoke or quit within the past 15 years. In some cases screening may be recommended for other people based on personal risk factors for lung cancer.
In addition, studies looking at exercise and lung cancer as well as diet and lung cancer suggest there are some things that both people without and people with lung cancer can do to lessen risks.
The Stigma Interferes With Early Diagnosis
My favorite part of lung cancer events I attend, is when lung cancer survivors share their story. A special time, but oh so painful. Time and time again people share what eventually led to their diagnosis -- often a series of visits, with several doctors, over a period of months, during which time they have been diagnosed with everything from asthma to Lyme disease.
Lung cancer flies below the radar screen for many health care professionals, especially lung cancer in never smokers and lung cancer in young adults.
For this reason, many are diagnosed when lung cancer has already spread, and the chance of a cure with surgery has passed. In fact, young adults and never smokers are more likely to be diagnosed at an advanced stage of the disease.
Until we have a widespread screening tool for lung cancer, it's important for health professionals and patients alike, to realize that all you need to get lung cancer is lungs. The symptoms of lung cancer can be different in non-smokers than smokers, and those of lung cancer in women are often different than symptoms in men. Be your own advocate. If you have any symptoms that aren't adequately explained, ask for a better explanation or a second opinion. If we are to find lung cancer early, we need to dispel the myth that lung cancer is a smoker's disease. That's part of what lung cancer awareness month is all about.
The Stigma Interferes With Research for New Treatments
Private funding for breast cancer surpasses that of lung cancer by a great distance, as evidenced by Susan G. Komen being a household word and pink ribbons having a widely recognized significance. How many people can name the largest non-profits for lung cancer, and how many people even know the color of the lung cancer ribbon?
Public funding also lags far behind for lung cancer, and this is important because funding means dollars which in turn means research.
In 2012, federal research spending added up to $26,398 per life lost to breast cancer, vs only $1,442 per life lost from lung cancer. I have often wondered what the survival rate for lung cancer would be if the same amount of money and research had been invested as has been with breast cancer.
Why is the funding so low, and why are researchers less likely to devote themselves to lung cancer? The stigma. There is an unseen, unheard statement that says, "These people smoked so they deserve to have cancer." Nobody deserves to have lung cancer, whether a never smoker or a lifelong smoker. Making smoking cessation the focus of lung cancer awareness only increases this stigma and gap.
The Stigma Interferes With Research About Causes
I made a comparison earlier about deaths from breast cancer, vs that from radon-induced lung cancer. That can be taken a step further. I read studies galore looking at possible causes of breast cancer, as well as dietary and other measures which may reduce the risk. It's rare when I find similar studies looking at lung cancer.
What is causing lung cancer in non-smokers? Why is lung cancer increasing in young, never smoking women?
We need to change the face of lung cancer, so that we can begin to look at possible answers to these questions.
Lung Cancer is Increasing in Young, Never-Smoking Women
Most of us have read the headlines in recent years. Lung cancer in men is now decreasing in the United States, while that in women has leveled off. Yet there is one group for whom lung cancer is steadily increasing. Young, never-smoking women.
These women have to put up with constant questions about their smoking status, or another variant, "Did your parents smoke when you were growing up?"
Why can't we treat these women as we treat women with breast cancer in October?
Lung cancer isn't a "smoker's disease." Someone with lung cancer could be your mother or your daughter or your sister or your aunt. These young women deserve to know that they aren't being dismissed for having a smoker's disease, while at the same time coping with the stigma.
Focus of Lung Cancer Awareness Month
Okay. So smoking cessation shouldn't be the focus of lung cancer awareness month. What should be at the center of awareness?
Number one should be support. Every single person with lung cancer -- regardless of smoking history -- deserves our love, compassion, and the best care possible. Think of how women are treated during breast cancer awareness month, how they are celebrated, how they are reminded that research is being done to make a difference.
If you just don't know what to say, check out these tips on things not to say to someone with lung cancer. How would you treat your friend or loved one with lung cancer differently, if she had breast cancer instead?
Number two should be about awareness. Not smoking cessation as this is done everywhere year round. Instead awareness that lung cancer occurs in non-smokers and having knowledge of the early symptoms could make a difference. Those who are former smokers should have the opportunity to learn about screening options.
And just as breast cancer awareness month raises funds for research, lung cancer awareness month should also be a time to educate and encourage those with lung cancer about new advances, while providing funding for further advances.
A Word About Smoking and Lung Cancer
For smokers with lung cancer, quitting is critical. To speak of separating lung cancer awareness month from smoking is not to dismiss smoking as a cause of lung cancer. It is.
For the minority of people living with lung cancer who smoke, quitting is incredibly important, and likely the most important thing anyone can do to improve survival. Check out these 10 reasons to quit smoking after a diagnosis of cancer. Quitting smoking after a diagnosis of lung cancer improves the response to cancer treatments, improves quality of life, and improves survival.
For those without lung cancer, quitting not only reduces lung cancer risk, but improves survival in other ways. In addition to lung cancer, there are many cancers that are associated with smoking, and many other medical conditions associated with smoking.
The Quit Smoking Toolbox is a free resource to help you gather the tools you need to be successful in giving up the habit.
But remember that these tips on smoking and cancer were placed at the end for a reason. They apply to only a minority of people living with lung cancer today.
Amato, D. et al. Tobacco Cessation May Improve Lung Cancer Patient Survival. Journal of Thoracic Oncology. 2015. 10(7):1014-9.
American Cancer Society. Cancer Facts & Figures 2015. Accessed 06/08/15. http://www.cancer.org/acs/groups/content/@editorial/documents/document/acspc-044552.pdf
American Society of Clinical Oncology. Cancer.net Tobacco Use During Cancer Treatment. 04/2012. http://www.cancer.net/navigating-cancer-care/prevention-and-healthy-living/tobacco-use/tobacco-use-during-cancer-treatment
Amato, D. et al. Tobacco Cessation May Improve Lung Cancer Patient Survival. Journal of Thoracic Oncology. 2015. 10(7):1014-9.
Howlader, N., Noone, A., Krapcho, M., Garshell, J., Miller, D., Altekruse, S., Kosary, C., Yu, M., Ruhl, J., Tatalovich, Z., Mariotto, A., Lewis, D., Chen, H., Feuer, E., and A. Cronin (eds). SEER Cancer Statistics Review, 1975-2012, National Cancer Institute. Bethesda, MD, based on November 2014 SEER data submission, posted to the SEER web site, April 2015. http://seer.cancer.gov/csr/1975_2012/
National Cancer Institute. Cancer Statistics. Accessed 06/08/15. http://www.cancer.gov/about-cancer/what-is-cancer/statistics
National Cancer Institute. Lung Cancer Prevention (PDQ). Updated 05/12/15. http://www.cancer.gov/types/lung/patient/lung-prevention-pdq#section/_12
National Cancer Institute. Smoking in Cancer Care—for Health Care Professionals. Accessed 08/01/15. http://www.cancer.gov/about-cancer/causes-prevention/risk/tobacco/smoking-cessation-hp-pdq#section/_1
Parsons, A. et al. Influence of smoking cessation after diagnosis of early-stage lung cancer on prognosis: systematic review of observational studies with meta-analysis. British Medical Journal BMJ2010:340:b5569. Published online 21 January 2010.
by Dr. Patricia Thompson
Originally published on 23 August 2014 by the Bonnie J. Addario Lung Cancer Foundation
As a medical oncologist, I treat patients battling a variety of cancers – from common types such as breast and prostate to rare cancers of the brain and bones. But of all the types of cancer I see, none causes patients as much fear and dread as lung cancer.
Such distress is understandable. The disease continues to be the leading cause of cancer death for both men and women in the U.S. More people die of lung cancer each year than the next three most common types of cancer – breast, colon and pancreatic – combined. According to the American Cancer Society (ACA), lung cancer is expected to claim the lives of nearly 160,000 Americans in 2014, accounting for 27 percent of all U.S. cancer deaths.
Another reason lung cancer is feared is that long-term survival rates are very low. Although five-year survival is more than 53 percent for cases detected when the disease is still localized (within the lungs), it drops to less than 4 percent when diagnosed after tumors have spread to other organs. Unfortunately, because lung cancer can be difficult to detect, only 15 percent of cases are diagnosed at an early stage.
Although lung cancer rates are falling overall, the rate has been increasing among two groups in particular: women and non-smokers. In fact, according to the National Cancer Institute, over the past 36 years the rate of new lung cancer cases among men has dropped by nearly a quarter, while the rate among women has risen 100 percent. The U.S. Centers for Disease Control and Prevention reports that more women die of lung cancer than breast, uterine and ovarian cancers combined.
Another notable trend is the increase in lung cancer among healthy non-smokers. The ACA reports that between 16,000 and 24,000 Americans who have never smoked die from lung cancer every year. If lung cancer in non-smokers were its own category, it would rank among the top 10 fatal cancers in the U.S. For reasons doctors don’t fully understand, most lung cancer cases among non-smokers occur in women.
The rise in lung cancer among non-smokers is one reason stigmatizing the disease is increasingly seen as inappropriate. While it’s true the majority of cases continue to be diagnosed among smokers or former smokers, lung cancer can also result from factors over which individuals have little control: genetic mutations, as well as exposure to radon gas, secondhand smoke, air pollution and asbestos, among others.
Much more important is to continue improving our methods of detection and treatment. Great progress is being made in both. For example, while chest X-rays are generally the first diagnostic imaging a patient might undergo when lung cancer is suspected, low-dose computed tomography (CT) scans are proving more effective at finding lung tumors earlier, when they are easier to treat.
The value of CT scans in early lung cancer detection is making such screening more common. Some medical organizations are now recommending routine lung screening for high-risk patients – defined as individuals 55 to 74 years old with at least a 30-year smoking history, and who currently smoke or quit within the past 15 years. These are also the patients that derive the most benefit from screening.
For patients diagnosed with lung cancer, advances in treatment options are offering more hope. In addition to new surgical techniques which no longer require full open-lung surgery, technological advances are making radiation therapy more precise than ever – targeting lung tumors and sparing healthy tissue. With brachytherapy, thin catheters carry radioactive ‘seeds’ to lung tumors to deliver high doses of radiation up close.
Chemotherapy is advancing too, with new drugs and medical technologies that can help increase lung cancer survival. One exciting development is immunotherapy, which uses antibodies and man-made proteins to bolster the immune system and train it to attack cancer cells. Ongoing research on human genes is also helping scientists develop therapies specifically targeting the genetic mutations that drive tumor growth.
What’s most important to remember about lung cancer is it’s largely preventable, but everyone has some risk. Given recent trends, women should be aware of the signs of lung cancer – a lingering or worsening cough, shortness of breath, chest pain, unexplained weight loss, hoarseness, among others – and not hesitate to seek medical care if concerned. Let’s raise awareness of this terrible disease because awareness helps find a cure.
by Kathy Boltz, PhD
Originally published at oncologynurseadvisor.com on May 12th, 2014.
A study consisting of lung cancer patients, primarily smokers 51 to 79 years old, is shedding more light on the stigma often felt by these patients, the emotional toll it can have, and how health providers can help.
“It's eye opening when a patient says to you that they feel like lung cancer ‘just gets shoved under the rug,'” said Rebecca Lehto, PhD, RN, OCN, who led the project and is an assistant professor with the College of Nursing at Michigan State University in East Lansing. “Patients in one of the focus groups actually associated lung cancer with a black ribbon.”
Previous research has shown that lung cancer carries a stigma. Because lung cancer is primarily linked to smoking behaviors, the public's opinion of the disease can often be judgmental. Today, lung cancer remains the leading cause of cancer death globally.
Yet Lehto explained that up to 25% of lung cancer patients worldwide have never smoked. The World Health Organization has identified air pollution as a cause, and genetics also have been associated with the disease.
“No matter how a patient gets lung cancer, it shouldn't affect the care they receive or the role empathy should play,” she said. Her study was published in the European Journal of Oncology Nursing (2014; doi:10.1016/j.ejon.2014.02.003).
Lehto's goal is to raise awareness among health care providers about the additional burden stigma places on patients and develop patient care strategies that strengthen coping skills and symptom management.
“Understanding a disease from the patient's perspective is essential to providing the best medical care to anyone,” she said.
The study evaluated feedback from four focus groups, which is a format that Lehto suggests is uncommon in this particular area of research.
“There've been several studies examining lung cancer stigma, but most have relied on survey data” she said. “Most of the groups in this study had three to four people participating and relied on a group dynamic to foster discussion. The sessions actually appeared quite therapeutic … acting more like a peer group.”
Lehto's key findings showed participants expressing guilt, self-blame, anger, regret, and alienation relative to family and societal interactions. Yet, many also discussed feeling uncomfortable with their health care providers and even feared their care might be negatively affected because of their smoking background.
Although she admits more research is needed with larger, more diverse patient samples, Lehto said her findings could help substantiate the patient perspective on a critical issue that is of sociological importance. Lehto hopes the results will encourage health care providers to examine their own perceptions about lung cancer stigma and be more aware of how it impacts the patient.
“Arming providers with rich, contextual information may help us put biases aside and heighten empathy and understanding,” she said. “That would be a step in the right direction.”
Sonia Williams of Spotlite Radio interviews President and CEO of The Joan Gaeta Lunt Cancer Fund, Joe Gaeta. From April 15th, 2014.
by Dr. Lecia V. Sequist
Originally published by CNN.com on 10.30.13
Dr. Lecia V. Sequist is a medical oncologist at the Massachusetts General Hospital Cancer Center, an associate professor of medicine at Harvard Medical School. and a member of the LUNGevity Foundation's Scientific Advisory Board. The opinions expressed in this commentary are solely those of Dr. Lecia V. Sequist.
My patient, "Judy," is one of more than 228,000 Americans this year who will be diagnosed with lung cancer.
And like most of her fellow lung cancer patients, she is struggling not only to learn all she can about her diagnosis and treatment options, but also to adjust to the overwhelming burden of shame and stigma that plagues this disease.
When asked who is providing her with support, Judy said she is ashamed to admit her metastatic, incurable cancer diagnosis to loved ones, and that she is bearing the burden alone. Because one of the strongest risk factors for lung cancer is smoking, our society has come to the conclusion that people diagnosed with lung cancer somehow deserve it, that it was brought on by their own "bad" behavior.
Tell a friend or colleague that your aunt just found out she has lung cancer. Almost always the response will be, "Did she smoke?"
Then tell someone else that your aunt just found out she has breast cancer, or colon cancer, or any other type of cancer you can think of. This time the response will be pure sympathy, without any blame attached.
Donna Summer died of lung cancer not related to smoking
The feeling that lung cancer patients should somehow be held liable for their cancer diagnosis is often the only notion people have about lung cancer.
Lung cancer is the deadliest cancer, responsible for more than 25% of all cancer deaths. It kills roughly twice as many women as breast cancer, and almost three times as many men as prostate cancer.
What many people don't realize is that about 60% of all new lung cancer diagnoses are among people who have never smoked or are former smokers, many of whom quit several decades ago.
For the first time, the World Health Organization recently declared air pollution as a leading cause of lung cancer. In short, anyone with lungs -- anyone who breathes -- can get lung cancer.
Researchers are on the verge of a seismic shift in our ability to diagnose and treat lung cancer, and more funding is desperately needed to bring these promising new therapies to fruition.
In the last five years, researchers have learned that some lung cancers are remarkably sensitive to a new type of treatment, one that comes in a pill and is targeted specifically toward the genetic defects that make that particular cancer "tick."
In clinics across the country, oncologists are testing their lung cancer patients to find out which type of gene the cancer carries so they can know which type of targeted therapy will work best. As a result, some patients are living longer, with fewer side effects and improved quality of life compared to traditional therapies.
In addition, in the last two years researchers have started to learn how to harness the immune system to attack lung cancer, and have seen some patients with advanced disease go into prolonged remission, sometimes lasting long after the immune therapy is stopped. These types of successes in lung cancer treatments would have been unimaginable 10 years ago.
Scientists are deeply committed to broadening and improving therapy options until there is an effective treatment for all lung cancer patients.
Unfortunately, the stigma associated with lung cancer has translated to a massive inequality in research funding. When analyzing the combined 2012 cancer research dollars granted by federal organizations, for every woman who dies of breast cancer, more than $26,000 in federal research funding is devoted to breast cancer research. But for every woman who dies of lung cancer, just over 1,000 federal dollars are invested. The difference is staggering.
November is national lung cancer awareness month. Scientists don't have millions of dollars to spend on marketing to call attention to the need for research dollars. If they did, they would spend that money on research.
You can help by spreading the word about the need for lung cancer research to family and friends. By rejecting the tendency to blame lung cancer patients for their disease, you can help lift the crushing weight of stigma and guilt that for some can be as bad as the cancer itself.
With increased research, more lives will be saved. Please join me this November and talk about lung cancer, for Judy, and patients everywhere who are too ashamed to mention it.
The following was originally published at DukeHealth.org by Dr. Thomas A. D’Amico on June 21st, 2011. Thomas A. D’Amico, MD, is a professor of surgery and director of the Duke Cancer Institute’s lung cancer program. He was elected chair of the National Comprehensive Cancer Network board of directors in 2010.
Lung Cancer: Is “The Blame Game” Hurting our Progress? Thomas A. D'Amico, MD
As a thoracic surgeon, I operate on lung cancer patients every day. We discuss life-and-death issues regarding their surgeries, but we don’t usually talk about how they feel about their disease.
At a recent lung cancer advocacy event, I had the opportunity to hear one of my patients tell her story. A former Division I soccer player for East Carolina University, 24-year-old Taylor Bell was diagnosed with lung cancer two weeks after her 21st birthday. She puts a very different face on lung cancer than most people expect.
She’s very grateful for her survival, but she says that, even when she’s talking to survivors of other types of cancer -- to anyone, really -- when she tells people she has had lung cancer, inevitably everyone asks the same thing: “Did you smoke?”
Her point of view is, “Why is that the most important thing you want to know about me?” It’s offensive to her because, number one, she didn’t smoke, and number two, what if she did? Would that mean that she deserved the disease?
Assigning Blame for Lung Cancer
That is the underlying assumption when many people think about lung cancer: In an international survey commissioned in 2010 by the Global Lung Cancer Coalition, 22 percent of U.S. respondents admitted they feel less sympathy for lung cancer patients than for patients with other types of cancer, because of the link to smoking.
The reality is that 15 to 20 percent of folks who get lung cancer have no personal firsthand experience with tobacco. Some, like Taylor Bell, are complete non-smokers. Some have been exposed to secondhand smoke, which certainly is not their fault.
If you counted just deaths from lung cancer among nonsmokers, lung cancer would still be the sixth leading cause of cancer-related deaths in the United States.
But no one should be blamed for getting cancer, regardless of their smoking history. Most smokers first start the habit as teenagers, and by adulthood it becomes entrenched; nicotine addiction is among the hardest to overcome.
The real issue is not the smoker who develops cancer; it’s how we as a society assign blame for disease. If we are to measure our sympathies for the ill by the behaviors that may have contributed to their illness, what about the patients with debilitating heart disease who have led high-stress, low-exercise lifestyles, or people with type 2 diabetes who had poor eating habits?
What about the smokers who didn’t develop lung cancer but developed breast cancer, heart disease, or stroke?
Would you have more sympathy for a smoker with lung cancer if you knew he had grown up with little education about the dangers of smoking?
What about if the individual had a strong genetic predisposition to nicotine addiction?
Stigma Slows Progress in Fight Against Lung Cancer
The truth is, it’s rare that we can draw a straight line from a person’s disease to their lifestyle choices, and applying moral judgments to the ill is not only a waste of energy, but also a slippery moral slope.
I believe the public-health campaign against smoking and tobacco use has had unintended consequences: not only stigma for the victims of diseases associated with smoking, but actually slowing our progress in the fight against those diseases. And that is something we need to pay attention to.
The fact is that lung cancer is the most important cancer disease in our country, and indeed among all developed countries, in terms of its impact. In 2010, lung cancer caused 157,300 deaths in the United States, more than breast, prostate, and colon cancer combined, according to estimates from the American Cancer Society.
In 2006, the most recent year for which we have estimates, we spent $10.3 billion in care for lung cancer patients, and the estimated loss of economic productivity due to lung cancer is $36.1 billion -- far higher than the next-highest figure (which is breast cancer, at a $12.1-billion loss).
The burden of this disease to us as a society should be, in itself, enough to compel us to do everything we can to improve diagnosis and treatment. Yet lung cancer receives much less research funding than other types of cancer that cause fewer deaths.
The stigma associated with lung cancer definitely takes its toll on survivors personally, and it’s possible that it also affects research funding for the disease. Using the most recent available data on National Cancer Institute research funding, lung cancer received only $1,875 per death, compared to $17,028 per breast cancer death, $10,638 per prostate cancer death, and $6,008 per colorectal cancer death.
It’s impossible to read the minds of people who make decisions regarding funding for lung cancer research, but I think funding disparities can be attributed partly to a combination of the smoking stigma and ageism. If a 73-year-old person has a life-threatening disease, that’s not perceived as being as important to society as a disease that affects younger people. And an older patient population also means less patient advocacy.
The fight against breast cancer, for example, has been promoted successfully because many young women who are survivors have their life to give to raising awareness. The cure rate for lung cancer is much lower than for breast cancer. So there are fewer advocates.
Need for New Screening Methods and Biologic Therapies
There is a need for greater research funding to advance two priorities that could make a significant difference for patients with lung cancer -- perfection of screening methods to catch more cases in the early stages, and stepped-up evaluation of biologic therapies, which can be equally as effective or more effective than chemotherapy without the overall toxicity.
Improved screening is an urgent need. Today, only about 20 percent of lung-cancer cases are caught at stage one. If we could increase that to 40 percent, we would improve survival dramatically.
Spiral computed tomography (CT) scan screening is a promising technique that’s being tested for patients known to be at high risk, but as a widespread tool, even CT has a drawback: the high chance of false positives.
Your CT scan might show a little nodule, but that does not necessarily mean you have lung cancer, and follow-up testing for lung cancer is invasive: if you have a positive screening for a mammography, you get a needle biopsy, but a positive screen from a CT scan might lead to a surgery.
We would like to be able to determine your true cancer status without having to do additional CT screens on you for the next five years or subjecting you to an unnecessary lung biopsy.
A line of research that holds much promise is perfecting a method for combining CT scans with a serum or urine test that detects a protein or other biomarker.
Even if we improve diagnosis, we’ll always have people who present with advanced disease, and the cure rate for those people is, frankly, dismal. One way to improve that rate is with better targeting of biologic therapies.
Industry is producing these agents faster than we can test them. We need to put more effort into testing and enhancing these agents -- which could improve treatment for others cancers as well. For instance, Avastin (bevacizumab) is now known to be successful against lung cancer, but it wasn’t originally conceived as a lung cancer agent.
To carry out these research priorities, we must erase the stigma that accompanies lung cancer and give the disease the full research support that its sufferers and their families deserve.
In the meantime, we will count on survivors such as Taylor Bell, who handles the smoking question with grace. After she tells people that no, she never smoked, the second question usually is: “Well, how did you get it?” Her response: “Why does anyone get cancer?”
by Lynne Eldridge MD, reprinted from About.com
People can make insensitive comments to anyone suffering from an illness, but the stigma of lung cancer opens an extra door of vulnerability for those going through lung cancer treatment. “I didn’t know you were a closet smoker.” “My cousin Bill had lung cancer and he died.” Most of the time, people make these comments innocently without thinking; they don’t know what to say, are voicing their own fears about developing lung cancer, or are simply ignorant about the disease. Once in awhile, we encounter people that truly lack empathy or are downright rude.
Going through cancer treatment is a challenge enough, without adding the stress and hurt feelings that can come as a result insensitive comments. What can you do to minimize the impact of these remarks as you go through lung cancer treatment?
Surround Yourself With Supportive People
Surrounding yourself with loving, non-judgmental people is the first step in handling insensitive comments. People that know your situation well, can empathize, and provide unconditional support, help you focus on your treatment. Those who are less familiar with your illness or your methods of coping are less likely to respond in a way that nourishes your spirit.
Have a Spokesperson That Can Speak For You
Lung cancer treatment can be tiring, and the last thing on your list might be trying to figure out how to deal with insensitive comments. Talk openly with your loved ones ahead of time, anticipating less than supportive remarks that may come your way. Your loved ones can then shelter you by responding in a fashion that answers those comments, without starting a series of questions in your own mind. “There are many causes of lung cancer.” "I am sorry your cousin died from lung cancer but we are very optimistic that the treatment Jim has chosen will be effective, and could really use your prayers and support.”
Believing in, and loving yourself can head off many comments before they ever occur. When others see you fighting your cancer they are more likely to encourage you in your treatment. If they see you blaming yourself, they are more likely to join the cause and add to the blame. Nourish your own self-respect. If you don’t appear to be questioning what you could have done to prevent your cancer, or what will happen tomorrow, others might be less likely to make a comment…maybe.
Don’t Become Defensive
Fighting your lung cancer requires your energy now. Don’t allow hurtful comments from others to drag you down and put you in a defensive mode. Some comments may be deserving of an honest response, and possibly even a response that the remark was hurtful, but don’t set yourself up for a debate on what you might have done differently in the past. We can’t change the past, but we can focus on present treatment.
If the Comment Lingers in Your Thoughts, Try Relaxation
Some people find self-affirmation helpful as a method to build them up and get past the pain of insensitive comments. Relaxation techniques can return your focus to what is important –- maximizing the results of your treatment. A simple method of relaxation that can be done anywhere is visualization.
Educate the Ignorant
Sometimes it is best to ignore inappropriate comments, or have someone else speak for you. If you feel up to it, the best way to raise awareness and educate the public about lung cancer, is through the words of those who have been living with the disease. Let these individuals know that there are many causes of lung cancer, and that unconditional support is what you really need to fight your disease.
Maintain a Sense of Humor
When you are irritated when someone asks you once again how long you smoked (if you ever did), picture asking him or her a similar question were they diagnosed with cancer. “How long have you been…” Fill in the blank: obese, sedentary, addicted to tanning, obnoxious.
Have a Few Snappy Comebacks
My mother always taught me that 2 wrongs don’t make a right, but in the case of a stinging comment or particularly nasty remark, venting your frustration on the source might be just what the doctor ordered. Having a few snappy comebacks may help you dismiss some of these remarks before they penetrate your thoughts and leave you fuming silently. In response to a comment about smoking to a lung cancer patient, our About.com guide to surgery actually heard someone say “Why thank you, I didn’t know smoking could cause cancer, thank you for telling me, now I know I deserve cancer!”
Many of those insensitive comments that fester in your mind, have already left the mind of the deliverer. Don’t dwell on them. Address the remark, ignore it, or whatever, but let it go and forgive the one that was insensitive. Unresolved resentment won’t change the one that shared the comment, it will only poison you.
Originally published on January 16th, 2013 at dailynews.com.
By Stephanie Cary
A sign reading "Thank you for not smoking" hung on the front door of her home for years.
Neither Carollee Stater nor her husband ever smoked cigarettes, and the sign was to prevent secondhand smoke from visitors at her Apple Valley home.
But her efforts didn't stop the 73-year-old from being diagnosed with advanced lung cancer almost seven years ago.
"Unless you tell them up front that you've never smoked, the first question people ask is how long did you smoke?" Stater says. "That's fairly typical. People just assume that you got it because you smoked."
And the stigma is not exclusive to Stater. The Lung Cancer Project - a research collaboration aimed at better understanding lung cancer biases - found that three out of four people had a negative bias toward people with lung cancer.
"We found that people had conscious and unconscious beliefs that were more negative toward lung cancer and people suffering from the disease as compared to people with breast cancer," says Brian Nosek, founder of Project Implicit, a multi-university research collaboration involved in The Lung Cancer Project.
"For example, we found that people perceived those with lung cancer to be more to blame for their cancer, and that their diagnosis was more hopeless. This is probably due to the fact of the well-known association between smoking and lung cancer."
And while these are only the initial findings of the ongoing study, Dr. Marianna
Koczywas, an oncologist at the City of Hope who treats Stater along with many other lung cancer patients, says she has seen the negative connotation lung cancer patients, their families and the public associate with the diagnosis.
Many of her patients who were smokers, or had family members who smoked, say they deserve the disease because of the habit, she says.
And even those who didn't smoke are still assumed to have done so, she says.
While it's true that smoking is a main cause of lung cancer - active smoking attributes to almost 90 percent of lung cancer patients, according to the American Lung Association - Koczywas says a growing number of patients diagnosed with the disease never smoked.
"So I think that the thought has been changing," Koczywas says. "And I think from a physician's point of view, we're taught to educate these patients, their families and society that not everyone who develops lung cancer has cigarette exposure."
Other causes of lung cancer include exposure to asbestos, radiation or toxic chemicals like radon, and medical conditions that cause recurrent lung inflammation or lung scarring from diseases such as tuberculosis, says Koczywas.
In fact, radon exposure is the second-leading cause of lung cancer, accounting for 15,000 to 22,000 lung cancer deaths each year, according to the American Lung Association.
Stater, who never smoked and tried to avoid being around secondhand smoke, couldn't believe her diagnosis.
"I thought this is impossible, it shouldn't be happening to me," Stater says.
She still can't put a finger on the possible cause of her diagnosis, but Koczywas says patients shouldn't dwell on the reason why they got the cancer, but rather focus on the future and beating the disease.
Nosek hopes The Lung Cancer Project will help not only reduce the stigma associated with the disease, but also raise awareness of the other causes of lung cancer and promote treatment seeking.
"Effective treatment is not just knowing what procedure to do or medicine to give. It also includes proper preventative care, treatment seeking, and many other behaviors that relate to people's beliefs about what they think they can do and their knowledge about their health and diseases," Nosek says.
"Better knowledge will lead to better care," he adds.
As for Stater, she just wants people to not assume that she, or other people with the disease, were smokers and deserve their diagnosis.
"Even having a smoker in the house doesn't mean that you got it because of that," Stater says. "You could have picked it up anywhere, any party you've gone to, just the right amount of whatever to trigger the cancer. You just never know."