In 2012, Sandy Jauregui-Baza was hiking along the Tamul waterfall in San Luis Potosí, Mexico, when she started coughing and having trouble breathing. "I remember thinking I must be coming down with something," she recalls.
Jauregui-Baza was an avid exerciser; she ran or hiked daily, logging more than 100 miles each month. She ate clean, avoiding almost all processed foods. She figured she was too healthy for anything to be seriously wrong. But after developing flu-like symptoms, she went to an urgent care clinic in Los Angeles. The doctor thought it might be tuberculosis, based on the results of her cloudy chest X-ray and her recent honeymoon in Nepal, where the infectious disease is common. But a few days later, when the definitive test for TB came back negative, doctors did a lung biopsy to look for other causes.
Until about a decade ago, most doctors considered it nearly impossible for young nonsmokers to develop lung cancer. "It would have been assumed that a tumor found on the lung had spread from cancer elsewhere in the body," says David Carbone, MD, PhD, director of the James Thoracic Center at the Ohio State University Comprehensive Cancer Center. Today doctors know that isn't always the case: About one in five of the estimated 105,590 American women who will be diagnosed with the disease this year are what doctors call "never-smokers"—those who have literally never lit up or who have smoked fewer than 100 cigarettes in their lifetime. A 2012 French study revealed that from 2000 to 2010, rates of lung cancer among never-smokers shot up an alarming 33 percent. In fact, if lung cancer in nonsmokers was its own category, it would rank among the ten deadliest cancers in the United States. This is in part because the symptoms—coughing, chest pain, shortness of breath—are so similar to those of common illnesses; as a result, the disease is often ignored by patients and overlooked by physicians.
That's what happened to Natalie DiMarco, a nonsmoker who was diagnosed at age 32. During a personal-training session one day, she was so winded, "it stopped me in my tracks," she says. "It didn't seem like I was just tired from exercise." She made an appointment to see her primary care physician, who thought allergies were to blame. When she developed a nagging cough, she sought another opinion and was diagnosed with pneumonia. By the time her cancer was discovered through a biopsy six months later, DiMarco could no longer climb a flight of stairs without stopping to catch her breath. Like Jauregui-Baza, she had stage IV lung cancer.
If cigarettes aren't to blame, what is? Certainly, secondhand smoke plays a role, as do other environmental factors: According to the U.S. Environmental Protection Agency, a leading cause of lung cancer in nonsmokers is exposure to radon, a radioactive gas, and in 2013, the World Health Organization officially recognized outdoor air pollution as another cause. But experts believe these factors account for only a fraction of lung cancer cases among young never-smokers. "These patients just aren't old enough to have had the degree of exposure we would typically associate with cancer," says Pasi A. Jänne, MD, PhD, director of the Lowe Center for Thoracic Oncology at Dana-Farber Cancer Institute in Boston. Though studies have linked lung cancer in never-smokers to other factors, from estrogen to viral infections like HPV, none has emerged as a definitive cause.
Researchers are having success looking for answers in the very place where cancer begins—our DNA. Advances in gene-sequencing technologies have helped doctors discover that certain cancer-causing mutations occur about two to six times more often in tumors of never-smokers than in tumors of those who have a history of lighting up. The good news: The FDA has approved drugs that can home in on these mutations and deactivate them. Although the meds are not a cure, they can buy some patients more time—sometimes years—before the cancer returns; in one clinical trial, a drug called Xalkori was found to slow the progression of a type of lung cancer more than twice as long as chemo.
Jauregui-Baza had been on Xalkori for more than two years and says it allowed her to live "almost the same life as before cancer." Recently, however, it stopped working. Now on a new drug, she's also taking part in a first-of-its-kind study by the Addario Lung Cancer Medical Institute that's looking specifically at the DNA of young people with lung cancer. The hope is to identify additional mutations that could point the way to better treatments. Jauregui-Baza remains optimistic: "If I can stay alive until the next treatment comes, I have a good shot at beating this."
ALCMI Puts Spotlight on Lung Cancer in Young Adults
San Carlos, Calif. (July 23, 2014) – The Addario Lung Cancer Medical Institute (ALCMI) today launched a new study, the Genomics of Young Lung Cancer, to understand why lung cancer occurs in young adults, who quite often are athletic, never smokers and do not exhibit any of the known lung cancer genetic mutations. ALCMI, a patient-centric, international research consortium and partner of the Bonnie J. Addario Lung Cancer Foundation (ALCF), is facilitating this first-of-its-kind, multi- institutional, prospective genomic study in order to identify new genome-defined subtypes of lung cancer and accelerate delivery of more effective targeted therapies.
“It’s heartbreaking when you meet young adults with lung cancer, who should have their full lives ahead of them but instead are fighting for their lives because of the lack of lung cancer treatments,” said Bonnie J. Addario, stage 3B lung cancer survivor and founder of ALCMI and the ALCF. “This groundbreaking study will investigate why young adults under the age of 40 are getting lung cancer and whether they have a unique cancer subtype, or genotype, that can be treated differently.”
Our evolving understanding of the disease and new molecular tools suggest that young age may be an under-appreciated clinical marker of new genetic subtypes. An important goal for this research study is to reveal new lung cancer sub-types of lung cancer requiring distinct treatment strategies.
“Leveraging this study as a proof of principle, ALCMI is also characterizing other specific patient populations to support emerging data that lung cancer diagnostic and therapeutic interventions are more effective when individualized, and personalized approaches are brought to bear," Steven Young, President and COO of ALCMI, who also points out this study represents a unique public-private collaboration between the ALCMI consortium and Foundation Medicine, Inc.
The Genomics of Young Lung Cancer study is centrally managed by ALCMI while the Principal Investigator (study leader) is Barbara Gitlitz, MD, Associate Professor of Medicine, University of Southern California, Norris Comprehensive Cancer Center.
"This study lays the groundwork for discovery of novel targetable genotypes as well as heritable and environmental risk factors for lung cancer patients under 40,” Dr. Gitlitz said. "We'll be evaluating 60 patients in this initial study and hope to apply our findings to a larger follow-up study in the future."
Other investigators include Geoffrey Oxnard, MD, (Dana-Farber Cancer Institute), David Carbone, MD, PhD (The Ohio State University), and Giorgio Scagliotti, MD, PhD and Silvia Novello, MD (both at the University of Torino in Italy). Patients may enroll in the study regardless of where they live, and will not need to travel to any of the above institutions.
For more information about the study, please contact Steven Young, president of ALCMI, at (203) 226-5765 or firstname.lastname@example.org. Lung cancer patients living in the United States will not need to travel to any of the above institutions to participate (but may do so), and may learn more at https://www.openmednet.org/site/alcmi-goyl. Individuals living outside the U.S. may contact ALCMI at email@example.com for information on how to participate.
The Bonnie J. Addario Lung Cancer Foundation is one of the largest philanthropies (patient-founded, patient-focused, and patient-driven) devoted exclusively to eradicating Lung Cancer through research, education, early detection, genetic testing, drug discovery and patient-focused outcomes. The Foundation works with a diverse group of physicians, patients, organizations, industry partners, individuals, survivors, and their families to identify solutions and make timely and meaningful change. ALCF was established on March 1, 2006 as a 501c(3) non-profit organization and has raised more than $15 million for lung cancer research. To learn more, please visit www.lungcancerfoundation.org.
The Addario Lung Cancer Medical Institute (ALCMI), founded in 2008 as a 501c(3) non-profit organization, is a patient-centric, international research consortium driving research otherwise not possible, evidenced by ALCMI's current clinical studies CASTLE, INHERIT EGFR T790M, and the Genomics of Young Lung Cancer. ALCMI overcomes barriers to collaboration via a world-class team of investigators from 22+ institutions in the U.S. and Europe, supported by dedicated research infrastructures such as centralized tissue banks and data systems. ALCMI directly facilitates research by combining scientific expertise found at leading academic institutions with patient access through our network of community cancer centers – accelerating novel research advancements to lung cancer patients.
Originally published on June 24th, 2014 by Victoria Colliverat SFGate.com. Victoria is a San Francisco Chronicle staff writer. --- Natalie DiMarco's only obvious risk factor for getting lung cancer was having lungs.
Natalie DiMarcoDiMarco had been experiencing respiratory problems for months in 2010, but her doctors just assumed the mother of two had allergies. By the time she learned she had lung cancer, the disease had spread into her lymph nodes and reached the membranes that surround the lungs.
"I'm young, didn't have any history of smoking, and that's why a doctor didn't X-ray me from the beginning," said DiMarco, now 36, who lives in Penngrove with her husband, daughters, ages 5 and 6, and a teenage stepson.
An estimated 4,600 to 6,900 people under 40 in the U.S. are diagnosed every year with lung cancer that has no apparent cause.
The disease appears to be quite different from the lung cancer found in longtime smokers and, aside from initial research that indicates that young patients, like DiMarco, tend to share certain genetic changes, the source remains a mystery.
A new study just getting under way hopes to find out more about these patients, what they have in common and, potentially, why they get lung cancer. If researchers can find a common thread, or several, it could lead to more effective treatment or point the way to new targeted therapies.
Bonnie Addario, who was diagnosed with lung cancer in her mid-50s in 2003 and founded the organizations that bear her name, said much is unknown about this population of patients because it's never been systematically studied.
"We're hoping to find something that may be in another cancer or another disease that could be part of their therapy," she said.
Dr. Barbara Gitlitz, a lead researcher of the study and director of the lung, head and neck program at theUniversity of Southern California's Norris Comprehensive Cancer Center, said the disease should be thought about as its own entity.
"We may discover that by looking at the genomics of these people, we may find driver mutations. We'll see patterns that might be specific to this population and we might see something new," she said.
Time is of the essence, considering how devastating a lung cancer diagnosis is.
"What we're hearing quite often is that they're athletes and they're very fit - the people you would least expect to have cancer, let alone lung cancer," Addario said.
She added that the disease appears to be more common in young, nonsmoking women than in their male counterparts.
Inspired by Cal athlete.
Jill CostelloThe study was inspired by Jill Costello, a San Francisco native and varsity coxswain for UC Berkeley's women's crew, who died of lung cancer in 2010 at age 22, a year after she was diagnosed. Jill's Legacy, a subsidiary of Addario's foundation, was created in her honor to raise funds and awareness for lung cancer among young people.
Researchers do know that young people and nonsmokers with non-small-cell lung cancer - the most common kind - typically have alterations in their genes that can affect how the disease is treated.
The genetic mutation found most often - EGRF, for epidermal growth factor receptor - occurs in about 10 to 15 percent of non-small-cell lung cancer patients.
But a host of other known mutations - ALK, ROS1, BRAF, HER2, MET, RET - have also been identified as contributing to lung cancer in young patients, said Dr. Geoffrey Oxnard, a lung cancer specialist at the Dana-Farber Cancer Institute in Boston, also a lead researcher of the study.
Drugs have been developed in recent years to "target" those mutations, or go after those specific cells to thwart their growth. The first EGRF therapies, AstraZeneca's Iressa, or gefitinib, was approved by federal regulators in 2003 followed by Roche's Tarceva, or erlotinib, in 2005.
But even these relatively new treatments don't cure the disease; at most they buy time - from several months to five years - before the cancer returns.
Oxnard said he hopes the study - which will test for more than 200 mutations - will not only show a pattern of these genetic alterations but also spotlight the necessity for young and nonsmoking people to get genetically tested after diagnosis, which is not routinely done in all centers.
"We know comprehensive genetic testing has the potential to make a difference in any cancer patient, but we think in these patients, it's really going to be transformative," Oxnard said.
DiMarco, who hopes to participate in the study, said she learned her genetic subtype by seeking out specialists around the country. Almost by chance her biopsy was tested by a Boston surgeon for the ROS1 alteration, which in 2010 was just newly identified.
The mutation makes DiMarco a candidate for a drug called crizotinib, sold under Pfizer's brand name Xalkori. DiMarco, who has undergone numerous rounds of chemotherapy and radiation, has not yet resorted to Xalkori because she and her doctors want to keep that in the arsenal to use only if and when it becomes necessary. So far her disease has been kept in check, and she's been off chemotherapy for 17 months while undergoing regular scanning.
Lisa GoldmanAnother young patient, Lisa Goldman, a mother of two who lives in Mountain View, was diagnosed with lung cancer in January at age 40. The disease was found in both lungs and considered stage four.
Like DiMarco, Goldman has tested positive for the ROS1 mutation and has also chosen to hold off on Xalkori after receiving other therapies in combination with traditional chemotherapies.
"I have that in my back pocket to use next," she said, referring to thePfizer drug.
Goldman, who may not be eligible for the study now that she's 41, said the stigma of lung cancer because of its connection to smoking causes her to hesitate about naming her disease and then assert she's never smoked. But she speaks out about having lung cancer because she says she has to.
"People need to know this happens. I'm not a fan of smoking, but nobody deserves to get cancer," she said. "Smoking is a contributor to breast cancer and heart disease and other disease, but people don't ask you if you caused this yourself."
Goldman's latest scan showed her tumors had shrunk or remained stable, with the exception of one tiny new spot. But she tries to retain a sense of normalcy, particularly for her kids, ages 8 and 11.
"How do you live with something like this hanging over your head?" she said. "You just can't live like every day is your last."
Living in the present.
DiMarco manages by incorporating Chinese medicine - acupuncture, massage, cupping therapy - into her life. As far as her young children know, their mom has some "bad cells in her body" that "made a spot in her lung" and that she has to take medications to get rid of it.
While DiMarco knows she's been dealt a difficult hand, she tries to live in the present but look to the future about the potential treatment options.
"It's all about what card you play that buys you the most time," DiMarco said. "If I understand what to do now ... I can sleep easier and not have to worry. But I need to have a plan. I need to know, what do we do next?"
About lung cancer:
Every year, more than 228,000 people are diagnosed with lung cancer in the U.S. and about 160,000 will die of the disease.
An estimated 7,000 to 9,000 people under age 40 are living with lung cancer. The average age at diagnosis is 70.
This story was originally published by CBS News on February 28th, 2014.
BALTIMORE (WJZ) - After a long battle with lung cancer, the Orioles director of public relations died Friday morning at age 36.
Monica Pence Barlow was diagnosed with stage IV lung cancer in September 2009.
"I was blown away by the diagnosis. I was just 32. I had never been a smoker, I had no family history of cancer, and I had always maintained a healthy lifestyle," she wrote in a an article posted on American Association for Cancer Research last year.
Barlow has been the O's PR director since April 2008.
Majority owner Peter Angelos released the following statement:
"It was with deep sadness that I learned of Monica's passing this morning. In her 14 years with the club, she was a beloved member of the Orioles family, starting as an intern and becoming director of public relations. Over the past four and a half years, the work Monica did to raise awareness and funds for cancer research was a testament to her dedication to helping others. The strength and resiliency she displayed by not letting her illness define her was a great inspiration to all who knew her. Her loss will be felt deeply by not only our front office staff, but also our manager, players and coaches, with whom she worked on a daily basis. On behalf of the club, I extend my condolences to her husband, Ben; her parents, Wayne and Ramona Pence; her brother, Jonah; her sister, Natalie; and her family and friends."
The team plays its first exhibition game in Port Charlotte, Fla. on Friday. Manager Buck Showalter broke the news to players before their drive.
He choked up when asked to say a few words about Barlow at a Friday morning presser, according to an article posted on MASN.
"I tried to text her every night before I went to bed," Showalter said. "Today was the first time I didn't get a returned one."
He released the following statement:
"We lost a feather from the Oriole today. Monica embodied everything we strive to be about. Her passion, loyalty and tenacity set a great example for everyone in the organization. She was so courageous in continuing to do her job the last few years despite her pain. This is an especially tough day for those of us that worked with her on a daily basis. It was a blessing to have her in my life. She made our jobs so much easier. We won't be able to replace Monica. We will only try to carry on. I am going to miss her as a colleague and a friend. She was a rock."
Barlow interned with the Orioles in 1999 and spent a year as PR assistant with the Richmond Braves.
When it comes to U.S. cancer research funding, deadly disease doesn't always translate into dollars. Lung cancer - the nation's top cancer killer - ranks near the bottom by many measures of funding.
Lung cancer's five-year survival rates have hovered around 15 percent for the past four decades, while survival rates for most other cancers have climbed. Ninety-nine percent of prostate cancer patients and 89 percent of breast cancer patients now live at least five years past diagnosis. Lung cancer symptoms are vague and there isn't a screening approved for the general population, so doctors often discover lung cancer in advanced stages.
Last year, the National Cancer Institute, a division of the government's National Institutes of Health, awarded breast cancer researchers nearly twice as much funding as lung cancer scientists. In the ratio of research dollars to deaths for the 10 most common types of cancer, lung cancer ranks near the bottom of the list.
One problem, according to Dr. Heather Wakelee, a thoracic oncologist at the Stanford Cancer Institute, is that most people view lung cancer as a smoker's disease that could have been prevented.
While a majority of U.S. lung cancer patients are current or former smokers, about 20 percent of women and 10 percent of men with lung cancer never smoked. If only nonsmokers' deaths were counted, lung cancer would still rank in the top 10 deadliest types of the disease. The promising news, Wakelee said, is tumors often mutate differently in nonsmokers, and new drugs are being developed to target those mutations and increase survival rates. Here's a look at lung cancer funding, by the numbers.
159,480 The number of Americans projected to die of lung cancer in 2013. Lung cancer kills about four times more people than breast cancer and three times more than colorectal cancer, the second leading cancer killer.
$314.6 million The amount of research dollars lung cancer received from the National Cancer Institute in 2012, making it second to breast cancer in federal funding. Breast cancer researchers received nearly twice as much. $2,000 When the amount of NCI lung cancer research funding is divided by the number lung cancer deaths, it equates to about $2,000 for each person who died last year. For breast cancer, it's more than $15,000 per death. It's about $9,000 for each prostate cancer death, and $5,000 for each colon cancer death.
15% The percentage of Americans with lung cancer who have never smoked, according to the Lung Cancer Foundation of America. Forty-five percent are former smokers, and the remaining 40 percent currently smoke.
This column originally appeared at Times-Herald.com on Wednesday, November 20th, 2013 by Dr. Saeid Khansarina. Board certified in thoracic surgery, Piedmont Newnan Hospital’s Dr. Saeid Khansarinia has special interests in robotic surgery and thoracic oncology. A graduate of the University of California in San Diego, he received his medical degree from St. Louis University and completed his internship and residency in general, thoracic and cardiovascular surgery at the University of Florida. He is a Fellow of the American College of Surgeons.
The trouble is: medical experts aren’t sure why more non-smoking women are being diagnosed when the number of new lung cancer cases seems to have plateaued in men. Secondhand smoke and radon exposure can play a role in the development of lung cancer, but plenty of patients who have rarely been exposed can still have lung cancer, too. Early detection, the key to beating lung cancer, remains a challenge for healthcare providers because patients rarely present symptoms until it is too late.
The common stereotype that lung cancer is a “smoker’s disease” continues to plague the ability to raise widespread awareness and fundraising efforts for the disease that is second only to heart disease as the largest killer in the United States. Those with known risk factors for lung cancer, including family history and people who have smoked for a long time, are encouraged to get screened and take advantage of Piedmont Newnan Hospital’s discounted, low-dose computed tomography (CT) lung cancer screenings. (For more information, visit piedmont.org/lung.)
Lung cancer is responsible for claiming the lives of more people than colon, breast and prostate cancer combined. Yet, so few know about it or think it cannot affect them because they don’t smoke. This year, 159,480 Americans with lung cancer will die. Approximately 16,000 to 24,000 of these people who died never even smoked, according to the American Cancer Society. Symptoms can be as vague as coughing, shortness of breath, wheezing, recurring lung infections and hoarseness.
While screening mechanisms are still being developed for younger, non-smoking men and women, it is always important to pay attention to what your body is telling you about your health. If you notice symptoms such as those listed above, it is best to seek help from a medical expert.
"We are asking the big question. What will it take to make lung cancer a chronically managed disease in the next 10 years?" said Bonnie J. Addario, lung cancer survivor and founder of the ALCF. "The Next Decade in Lung Cancer offers a glimpse into the future from the perspective of researchers, advocates and most importantly patients."
The three-part series will unite industry leaders in medicine, research and technology who will discuss the latest advancements and breakthroughs in lung cancer. Advocacy and policy agencies and foundations will also discuss access, information, education and needed legislative changes.
The series, which will take place over the next three months, kicks off on November 10, 2013 at 2 p.m. (PST). Guests who attend the Living Room in-person will have the opportunity to network with other patients and with the guest speakers listed below. Online guests can also participate through the live stream, asking questions and sending comments via a live chat function. The session also airs at a later date locally on Peninsula TV.
Larry Heifetz, MD, FACP Gene Upshaw Memorial Tahoe Forrest Cancer Center (Moderator)
Andrew Allan MD, PhD - CMO/EVP Clinical - Pre-Clinical Development – Clovis Oncology
David Jablons, MD, University of California San Francisco Medical Center
Ita Laird-Offringa, PhD, University of Southern California Medical Center
Harvey Pass, MD, New York University Cancer Center - Langone Medical Center
For more information about the full series, please visit the ALCF website.
The ALCF regularly hosts the Living Room on the third Tuesday of every month and the program is live-streamed online. It is the nation's premier lung cancer support group for lung cancer patients and their families, offering expert opinion and advice not found anywhere else. Visit www.ustream.com and select the Lung Cancer Living Room Support Group channel to see the video archive, including full length videos and 20-minute condensed highlighted versions, available the week after the group meets.
The patient empowerment educational series is made possible through funding partners: Biodesix, Bristol-Myers Squibb, Celgene, Genentech and The Safeway Foundation.
About The Bonnie J. Addario Lung Cancer Foundation The Bonnie J. Addario Lung Cancer Foundation (ALCF) is one of the largest philanthropies (patient-founded, patient-focused, and patient-driven) devoted exclusively to eradicating Lung Cancer through research, early detection, education, and treatment. The Foundation works with a diverse group of physicians, organizations, industry partners, individuals, survivors, and their families to identify solutions and make timely and meaningful change. The ALCF was established on March 1, 2006 as a 501c(3) non-profit organization and has raised more than $10 million for lung cancer research and patient services.
NEW YORK, Aug. 19, 2013 /PRNewswire-USNewswire/ -- The Lung Cancer Action Network (LungCAN), a collaborative group of 21 lung cancer advocacy organizations, today unanimously endorsed lung cancer screening recommendations recently released in draft form by the U.S. Preventive Services Task Force (Task Force).
"Tens of thousands of lives will be saved," said Lung Cancer Alliance President and CEO Laurie Fenton-Ambrose. "Screening those at high risk now will dramatically make a difference and will open the door to much faster advances in research on all stages of lung cancer. This is a game changer."
The Task Force recommends people between ages 55 and 79 with a minimum smoking history of 30 pack years get an annual low-dose CT scan. The recommendation applies to current smokers and former smokers who quit within the past 15 years. Pack years are calculated by multiplying the average number of packs smoked a day by the number of years smoked. One pack a day for 30 years or two packs a day for 15 years equal 30 pack years.
Lung cancer screening has the potential to be the most effective cancer screening, in terms of lives saved per screening. For example, it takes approximately 900 mammograms of women between ages 50 to 65 to prevent one breast cancer death. That number is significantly higher in younger women. To prevent one cancer death in women ages 40-49, it would take approximately 1,900 mammograms. And for colorectal cancer, the estimate is that one death is prevented for every 500 people screened by colonoscopy. Evidence shows that to prevent one lung cancer death, it takes approximately 320 high-risk persons screened by low-dose CT scan, according to the Task Force.
LungCAN credits the contributions of many to bring this undertaking to fruition, including an army of researchers, advocates, volunteers, patients and many others, in addition to Task Force members. Lung cancer advocates have helped usher in and witnessed major advances in recent months, including the passing of the Recalcitrant Cancer Research Act and the National Lung Screening Trial results which contributed significantly to the Task Force's recommendation.
While experts predict lung cancer screening may save 20,000 lives a year, many more lives remain at stake. LungCAN member organizations will not rest on these laurels. Lung cancer remains the number one cancer killer, claiming more lives than breast, colorectal, prostate and pancreatic cancers combined. Early detection for those at high risk is a step in the right direction.
"This is a vital step in saving lives from lung cancer for the thousands of people who fit the high-risk profile," said Andrea Ferris, President and Chairman of LUNGevity Foundation. "However, tens of thousands of people will be diagnosed with lung cancer this year who do not fit into these parameters. We remain committed to finding a non-invasive test so that lung cancer can ultimately be found earlier in the full population affected."
The recommendation, which is in draft form, is open for public comments through Aug. 26, 2013. The final version will incorporate revisions based on comments received. To comment on the recommendation, go to: www.uspreventiveservicestaskforce.org/draftrec.htm. When finalized, under the Affordable Care Act, health insurance will cover the cost screening with no co pays for those identified as high risk.
Even though the radiation exposure is fairly low, lung cancer screening is not recommended for everyone because the cumulative exposure to radiation over the course of a screening program cannot be considered harmless, according to the Task Force. For those at high risk, however, the benefits far outweigh the risk.
The Lung Cancer Action Network is a collective group of lung cancer organizations united to serve as a vehicle, filter, incubator for the exchange of ideas and information. LungCAN facilitates and enhances opportunities for collaboration with the focus on lung cancer. LungCAN members are: American Lung Association, Beverly Fund Lung Cancer Foundation, Bonnie J. Addario Lung Cancer Foundation, CancerCare, Cancer Support Community, Cancer Survivors Against Radon, Caring Ambassadors Program, Chest Foundation, Dusty Joy Foundation, Free Me From Lung Cancer, Gianni Ferrarotti Lung Cancer Foundation, John Atkinson Lung Cancer Foundation, Lung Cancer Alliance, Lung Cancer Circle of Hope, Lung Cancer Foundation of America, LUNGevity, National Lung Cancer Partnership, Respiratory Health Association of Metropolitan Chicago, Rexanna's Foundation for Fighting Lung Cancer, Uniting Against Lung Cancer, Upstage Lung Cancer.
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?”