Originally published on June 24th, 2014 by Victoria Colliver at 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.
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:
Bonnie J. Addario Lung Cancer Foundation Releases New Public Service Announcement Featuring Penny MarshallRead Now
April 07, 2014 12:37 PM Eastern Daylight Time
SAN CARLOS, Calif.--(BUSINESS WIRE)--The Bonnie J. Addario Lung Cancer Foundation (ALCF) today released the third in a series of Public Service Announcements featuring well-known celebrities to raise awareness for the nation’s number one cancer killer. Film director and actress Penny Marshall, who is a lung cancer survivor, is featured in the new 30-second PSA.
“There are so many people who are not aware that lung cancer takes more lives every year than breast, prostate and colon cancers combined. The sad reality is that anyone can get lung cancer”
“There are so many people who are not aware that lung cancer takes more lives every year than breast, prostate and colon cancers combined. The sad reality is that anyone can get lung cancer,” said Bonnie J. Addario, stage 3B lung cancer survivor and founder of the ALCF. “As a lung cancer survivor myself, I applaud Penny for helping us to raise awareness and educate patients so they can live longer.”
Marshall is known for her acting as well as directing careers, having starred in the 1970s and 80s sitcom Laverne & Shirley and later going on to direct successful movies such as A League of Their Own and Big.
Previous lung cancer Public Service Announcements featuring Maroon 5 and former NFL Wide Receiver Hank Baskett can be viewed here on the Foundation’s website.
About the Bonnie J. Addario Lung Cancer Foundation: 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, 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 $10 million for lung cancer research. To learn more, please visit www.lungcancerfoundation.org.
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'Read Now
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:
"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
Perry Communications Group
Matt Notley, 916-658-0144
This article was originally published at 4:24 pm on Tuesday, December 3, 2013 by Kathryn Roethel of the San Francisco Chronicle
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.
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.
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.
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.
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.
@bonniejaddario Responds to @consumerreports March Issue Cover Story #lungcancer #earlydetection #factsRead Now
Leading magazine downplays value of lung cancer screenings, to the detriment of advances in early detection research.
SAN CARLOS, Calif., March 20, 2013 /PRNewswire
The following statement was issued by Bonnie J. Addario regarding the March cover article in Consumer Reports: The cancer tests you need--and those you don't:
"I am appalled by the March 2013 Consumer Reports cover story (The cancer tests you need--and those you don't), because of the misleading and misguided message it sends to people who really need life-saving cancer screening tests, and how it discredits the value and importance of proper early detention cancer screening tests.
"The article's irresponsible reporting is best summed up in this statement on page 31: 'But most people shouldn't waste their time on screenings for bladder, lung, oral, ovarian, prostate, pancreatic, skin or testicular cancers.'
"Consumer Reports is one of the most trusted publications in America. Anyone, whether they know they are low or high risk, will read that statement and walk away believing early detection cancer screening tests are unnecessary. The six-page article mentions only twice that its ratings apply only to asymptomatic, low-risk population.
"Shame on Consumer Reports. We are talking about people's lives here.
"I myself am a lung cancer survivor. For more than a year I was misdiagnosed and not given an early detection screening test, even though I was in a high-risk category. When I was finally diagnosed I was stage 3B. Unlike so many others, I beat the odds. But my odds would have been better with an early detection cancer screening test. I founded the Bonnie J. Addario Lung Cancer Foundation seven years ago to advocate and raise money for better research, education, early detection and treatment. Because something must be done.
The stats are staggering.
"Cancer screening and treatment are certainly at a crossroads, as the article states. This is made clear as well by recent legislation to direct more tobacco settlement money to early lung cancer detection programs. But the article's irresponsible representation of the value of screening tests, I fear, might damage the progress my lung cancer foundation has made over the past seven years - just as we are making great strides.
"People cannot readily see symptoms of lung cancer. Symptoms are deep in the lungs, unlike breast cancer, where lumps can be felt and are visible. When you are diagnosed with lung cancer it is often at stage four, when it's too late.
"The Consumer Reports article makes only one responsible and thoughtful statement: 'Weighing the risks and benefits of cancer screening is best done in the context of a patient-doctor relationship.'
"Consumer Reports should stay out of the health care advice business, and stick to writing about toasters and washing machines. I wouldn't approach my doctor about whether I should buy a Honda or a Ford. And likewise, people should not consult Consumer Reports to help them decide whether or not to have a potentially life-saving cancer screening test."
About the Bonnie J. Addario Lung Cancer Foundation
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, 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. BJALCF was established on March 6, 2006 as a 501c(3) non-profit organization and has raised more than $9 million for lung cancer research.
Congratulations to The Joan Gaeta Lung Cancer Funds's Medical Advisor, Dancing for Joan's Honorary Chairman, Joan Gaeta's Pulmonologist, friend, and all-around great guy - Dr. Paul Scheinberg!
From The Atlanta Business Chronicle (Jan 25-31, 2013 Edition):
Kelcey Harrison, center, and Jill Costello, right, were lifelong friends, seen here with Gianna Toboni on a grade school field trip. [Photos courtesy of Kelcey Harrison]
A couple of Saturdays ago, while you were watching college football or out buying a Christmas tree, 24-year-old Kelcey Harrison was running the last 20 miles of a 3,500-mile "jog" from Times Square to her hometown of San Francisco.
Harrison, who graduated from Harvard, where she played soccer, is young, healthy and motivated. By the time she completed The Great Lung Run, she had logged 30 miles nearly every day for four months straight.
Harrison ran because she can. And because her lifelong friend Jill Costello -- who was also once young and healthy and motivated -- cannot.
On June 6, 2009, Costello, then a junior at Cal and a member of the crew team, was diagnosed with lung cancer. The disease was already at stage 4 and had spread; she was given about a year to live. Costello spent that year finishing school, earning Pac-10 Athlete of the Year honors, acting as vice president of the Panhellenic Council and doing tireless work for lung cancer charities -- all while undergoing chemotherapy.
In May 2010, doctors told Costello she could not be cured; all they could do was try to make her last few weeks more comfortable. In those last weeks she walked across the stage at graduation (with a 4.0 GPA) and helped Cal to a second-place finish at the NCAA crew championships.
"Jill was really strong," Harrison said. "She was really confident that she was gonna be the one to beat stage 4 lung cancer. She was very convincing in her argument; even at the very end we really believed she was going to be the miracle."
Costello died June 24, 2010.
Great Lung Run
No. 1 Cancer Killer
A young, vibrant nonsmoker, Costello was the last person anyone would expect to get lung cancer. But 20 percent of the more than 20,000 women diagnosed with the disease each year have never smoked. Lung cancer is the No. 1 cancer killer in the United States, taking more lives than colon, breast and prostate cancer combined.
Despite the staggering stats, there are no pink ribbons worn or mustaches grown in the name of lung cancer. There is, instead, a stigma that the disease is self-inflicted; an illness brought on by a life of smoking. Research and funding is limited and the five-year survival rate for lung cancer is 15.5 percent; it hasn't budged in 40 years. More than half of all people with lung cancer die within a year of being diagnosed.
Costello hung on for 18 extra days.
So Harrison runs to raise money and awareness about the disease that took her friend's life. The Great Lung Run has raised more than $150,000 for Jill's Legacy, an advisory board to the Bonnie J. Addario Lung Cancer Foundation, the charity Costello worked closely with in the months before her death.
Darby Anderson, the director of Jill's Legacy, said at first she didn't think Harrison would follow through with her plan to run across the country.
"I thought she was nuts," said Anderson, who was a sorority sister and close friend of Costello's. "I told her to call me back when she had an actual plan and then we would take her project from there. … [That] April I saw her in D.C. when I was there for our Jog for Jill Georgetown and she had a website, route, places to stay and was ready to actually make this happen. I was blown away."
Harrison was up early every morning to jog her 30 miles, taking a day off every 10 days or so to let her body rest. She took a break to walk every once in a while, but never stopped moving until the 30 miles were finished.
"It's just like getting up and going to work," Harrison said. "Sure there are days where it wasn't the first thing I wanted to be doing but that was my routine and my job at the time, so just gotta get up and do it."
Harrison's not sure how, but after 3,500 miles, she feels OK.
"I don't have an answer as to why I'm holding up so well," Harrison said. "It's a mystery to me just like everyone else. … People said they think I have the right motivation and someone special looking over me."
Harrison ran solo for the first six weeks of her trip, pushing her belongings in a jogging stroller and staying with hosts who would pick her up at the end of each run and drop her off the next morning where she left off. Eventually one of her friends from Jill's Legacy joined her on the road in a donated car, driving her to and from hotels along the way.
(The donated car, by the way, was a gold Chrysler 300 with 22-inch rims. When their first donated car lost its power steering the girls ended up at Oscar's Auto Salvage in New Mexico, hoping to sell it and rent one for the remainder of the trip. Instead, Henry, the shop's owner, offered his own tricked-out car for the final months of the trip.)
Just another day at the office
Running more than a marathon every day for four months sounds nearly impossible, but Harrison said from the start that if Costello could accomplish as much as she did in her last year of life, all while being ravaged by chemo, then a simple jog across the country was nothing.
"I spent a week with her on the road and she'd finish up her run and it was like she had just finished a day at work," Anderson said. "We would hang out, head to dinner, chit-chat and do completely normal things, except that she had just run 30 miles that day. … Kelcey has more courage and inspiration than anyone I have ever met and I am so grateful to have been able to just be a small part of this huge adventure."
The last part of The Great Lung Run was across the Golden Gate Bridge to Crissy Field. The Cal crew team, Harrison and Costello's high school crew team and other friends and family joined in for the final miles.
The official completion of Harrison's run took place last Thursday -- a celebratory cocktail party at St. Ignatius College Prep, the high school she and Costello attended. Harrison had been honoring Costello's memory with each step of her journey, but returning to a place where they grew up was difficult.
"It's not hard to think about Jill all the time because she sort of turns into this image, a legend" Harrison said. "What's hard is when you find those moments to step back and remember Jill your friend. Jill who did Halloween costumes with me for 16 years of our lives. That's where it's tough.
"It's become bigger than her, which sometimes is sad because you feel like you're forgetting a little bit of your friend, but in her last year of life that's really what she was aiming for. All of us at Jill's Legacy are really proud of what we're accomplishing but also really sad about [the reason] we're all involved in this."
Harrison will wake up this week with no miles to run, no path to follow. She's no longer interested in attending law school, but isn't quite sure what she wants to do instead.
"I'll take a little time to relax and then try to figure out what's next," she said. "I'm looking out for jobs, but I'll always be tied to our foundation and the cause of lung cancer. We'll always have jogs, bar events, restaurant things; anything to get more young people involved in lung cancer awareness. That will continue forever."