Originally published on June 24th, 2014 by Victoria Colliver at SFGate.com.
Victoria is a San Francisco Chronicle staff writer.
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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.

The $300,000 Genomics of Young Lung Cancer Study is small - just 60 patients - but the lead researchers hope it will help find the answers they're looking for and even help others with lung cancer, particularly the 15 percent of the nearly 230,000 Americans diagnosed with lung cancer each year who have never smoked.

Addario Lung Cancer Medical Institute, a partner organization of theBonnie J. Addario Lung Cancer Foundation in San Carlos, initiated and is paying for the study along with Genentech.

Not much is known.

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.

Bonnie AddarioJust 15 percent of people diagnosed with lung cancer live longer than five years, in part because the disease is difficult to detect in its earlier stages and tends to be caught too late. That's particularly true among young people because no one's looking for it.

"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.
• Lung cancer takes more lives than any other cancer. It accounts for 27 percent of all cancer deaths - more than breast, prostate and colon cancers combined.
• Funding for lung cancer lags behind other cancers, especially considering the impact of the disease. The federal government spent $315 million on lung cancer research in 2012 compared with $603 million for breast cancer.
• Most people diagnosed with lung cancer are former smokers or people who've never smoked - about 15 percent have never smoked and more than 50 percent have smoked in the past but quit.

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.

Bonnie J. Addario, founder of the Bonnie J. Addario Lung Cancer Foundation, issued the following statement in response to the Nov. 29 Dr. Oz segment on symptoms people worry about most:

"Dr. Oz,

"I'm sure you are aware by now that your segment on Friday, Nov. 29 -- 'The Alarmist Guide To The Symptoms You Worry About Most' -- caused quite a stir in the lung cancer community. A woman on your show complained about a nagging, persistent cough and read online that it may be a symptom of lung cancer. It IS a symptom of lung cancer. While you did advise her to see a physician if her cough continued for more than two weeks, you mislead your audience when you said, 'If you don't smoke you should always feel better about that.' You then proceeded to calm her fears and said she had post-nasal drip, not lung cancer.

"It is true that smoking is the number one cause of lung cancer, but more and more people every year are being diagnosed who have never smoked a day in their lives. Lung cancer in never-smokers, if it were a cancer by itself, is now the sixth deadliest cancer in the U.S. The American Cancer Society estimates that nearly 24,000 Americans will die of lung cancer in 2013 who never smoked. That is greater than the number of deaths associated with Leukemia, Non-Hodgkin's Lymphoma, Liver, Ovarian and Bladder cancers. Because there is so little funding for lung cancer research we still don't know why the number of never-smokers with lung cancer are increasing. Prevention and early diagnosis are extremely challenging as there isn't a reliable early detection test other than a CT scan.

"You did provide the proper advice to your guest at the end of the segment, but the message heard loudly among the lung cancer community is that never-smokers shouldn't worry about lung cancer, which sadly today is not the message well respected physicians like you should send.

"In May of 2012 you aired this short but important PSA on your show that 'Not only smokers get lung cancer.' We hope you'll consider revisiting this statement in more detail on an upcoming episode and partnering with us to increase awareness of lung cancer.

"In 2006 I founded the Bonnie J. Addario Lung Cancer Foundation, one of the largest and most active philanthropies dedicated to raising awareness and funding for lung cancer research and patient programs, with the ultimate goal of making lung cancer a chronically managed, survivable disease in the next 10 years. Our sister foundation, the Addario Lung Cancer Medical Institute, is launching a ground-breaking study in January called The Genomics of Young Lung Cancer Study, which aims to understand why never-smokers under the age of 40 are getting lung cancer and if they have a unique cancer subtype that could be treated differently. The research is being conducted by (list the institutions) Two patients who plan to enter the study, Ingrid Nunez and Emily Bennett-Taylor, were recently profiled in an article about the study in The Atlantic.

"This timely study offers you a great opportunity to clear up the confusion about smoking and lung cancer, and have a real discussion about the deadliest cancer in the U.S. and the world.

"Thank you in advance for understanding the concerns I am raising, and we look forward to working with you and your producers in 2014 to save lives."

Bonnie J. Addario

Bonnie J. Addario Lung Cancer Foundation
Media Contact:
Perry Communications Group
Matt Notley, 916-658-0144
[email protected]

When you hear someone has lung cancer, what is the first thing you do? If you’re like the majority of people in the general population, you’ll ask the person who has been diagnosed with this deadly disease whether or not they have smoked. Contrary to the popular belief, lung cancer is not exclusive to smokers. While smoking certainly increases a person’s risk of developing lung cancer, it is not the only factor to consider. Lung cancer can affect just about anyone. In fact, studies show that the rate of lung cancer in younger, non-smoking women is actually on the rise.

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.

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.

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?”