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BY GUEST BLOGGER | MAY 1, 2012
To paraphrase Winston Churchill, "This is not the end, but it is certainly the beginning of the end." I firmly believe that 2012 could be remembered as the year that changes the course of lung cancer given the efforts under way by patient advocates and medical leaders to bring responsible, safe and effective early detection to the at risk public.
In addition, by bringing best practices in a continuum of care linking prevention, early detection and treatment, we will stimulate more research and new approaches to identifying those at risk, preventing and treating lung cancer, more effective smoking cessation protocols and a better understanding of other causes of lung cancer.
Last February Lung Cancer Alliance has launched first of a kind "The National Framework for Excellence in Lung Cancer Screening and Continuum of Care," guidance for both consumers at risk as well as sites offering care.
The National Framework presents in three parts. First, it advises the public on their rights--starting with the right to know if someone is at risk for lung cancer. Risk factors include smoking history; family history of lung cancer; environmental exposures to radon, secondhand smoke, asbestos and other known carcinogens; exposure to battlefield fuels; history of other lung diseases. If someone has one or more of these risk factors, they need to talk to their doctor about screening with a low dose CT scan.
Second, the National Framework lays out guiding principles of screening and the continuum of care for screening sites. LCA contacts each one to ascertain that they are a multi-disciplinary team and that they follow a coordinated continuum of care for screening, diagnosis and disease management that complies with comprehensive standards based on best published practices. Once identified, LCA lists these sites and alerts the public on www.screenforlungcancer.org.
Third, the National Framework establishes the Lung Cancer Screening Excellence Forum. This Forum will be comprised of leading medical and health professionals as well as industry and insurance representatives. The Forum is a mechanism for the discussion of how best to collect data on outcomes, analyze the data and build feedback improvements into the system of care. If tissue, blood, breath and urine samples are collected during the screening process, biomedical research into all types of lung cancer, precancerous conditions and improved treatments can be accelerated and better coordinated.
The time has come for lung cancer screening and its continuum of care to be embraced. It is a matter of life or death. If we move swiftly and responsibly we can reduce lung cancer mortality by half by 2020.
Laurie Fenton Ambrose
President & CEO
Lung Cancer Alliance
Lungcanceralliance.org
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BY GUEST BLOGGER | NOVEMBER 28, 2011
There will be more than 220,000 people diagnosed with lung cancer in 2011. They will be our brothers, sisters, grandparents, co-workers, closest friends. They will be our parents.
Last year, my mom was diagnosed with stage 4 lung cancer. She's never smoked. That's a fact that I always feel obligated to share when talking about her diagnosis, but sincerely hope one day won't be such an entrenched part of the lung cancer conversation.
Our family was shocked by the diagnosis and even more appalled to learn that lung cancer is the No. 1 cancer killer among both men and women, accounting for more than 1 in 4 cancer deaths. Surely, we thought, a cancer this prevalent and virulent - one that kills 80 percent more women than breast cancer - must receive significant government funding and public support. We were wrong.
Women Paying a Fearsome Price
As a daughter, my thoughts quickly turned to the more than 105,000 women who are diagnosed with lung cancer each year. This is a disease that kills more women annually than breast, ovarian and uterine cancers combined. Over the last several decades, women have come powerfully and effectively together to organize, mobilize and build critical public awareness and support for the diseases that threaten them most, particularly heart disease and breast cancer. With lung cancer diagnoses among women up six-fold since 1930, I couldn't understand why women had not applied the same conviction, energy and savvy to lung cancer. Then I looked at the numbers.
Lung cancer is poised to take the lives of 71,000 women this year and up to now, there hasn't been much reason to be hopeful. The overall five-year survival rate lingers at 15 percent, where it has been for decades. While new treatments and funding have propelled the survival rates for breast cancer to 90 percent, lung cancer remains in an unfortunate area of catch up.
With so few survivors, it's difficult to build and sustain a movement. And for those lucky enough to survive this dreadful disease, a sense of community can be hard to come by.
Rebecca's Tale
For my friend Rebecca, who was diagnosed with lung cancer at age 28, living with a lung cancer diagnosis has been an isolating experience. "Like many Americans, I was clueless when it came to lung cancer," she says.
"Every October, for years, I would dutifully pin pink ribbons on my bags and participate in breast cancer walks in solidarity for women. But then when I was diagnosed with lung cancer, I learned that it kills far more people than any other cancer (breast, colon, ovarian, melanoma, brain and leukemia combined), and there were hardly any walks, ribbons or support groups out there. I felt alone."
Since my mom's diagnosis, I have spoken with so many women who echo Rebecca's feelings of isolation and loneliness. Lung cancer is a disease that has never received public attention or research dollars in proportion to its prevalence or virulence. Precious little is said or written about it. The result is that the most lethal cancer killer of all runs rampant.
Together, We Can Change This
Determined to turbo-charge the lung cancer discussion, my family recently launched a nationwide educational campaign – Leaders of the Lung Cancer Free World – intended to generate greater public awareness and understanding of lung cancer. With three non-profit partners – the CHEST Foundation of the American College of Chest Physicians, the National Lung Cancer Partnership and Uniting Against Lung Cancer – the Leaders campaign aims to focus public attention on this unrelenting killer that affects smokers and non-smokers alike. The campaign has four distinct target issues: women, political leadership, the smoking stigma and general public awareness.
There are many ways to get involved. You can sign a petition encouraging the President and Congress to declare lung cancer a national health crisis, donate to one of three partner organizations, ask your representatives to support the Lung Cancer Mortality Reduction Act, follow the campaign on Facebook and Twitter or take a pledge to stop smoking.
Anyway you slice it, lung cancer is a national health crisis requiring our attention. Over the next five years, more than 1,000,000 Americans will be diagnosed with lung cancer. They will be our mothers, fathers, sisters, grandparents, coworkers, closest friends. Together, we can help save many of them.
Arielle Densen is a co-founder of Leaders of the Lung Cancer Free World, a lung cancer advocacy group, and created the James Sivartsen Prize in Pediatric Cancer Research at the Hebrew University in Jerusalem. For the past six years, Arielle has served as a wish granter for the Make-A-Wish Foundation.
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BY GUEST BLOGGER | NOVEMBER 16, 2011
A few years ago, I saw Monty Python's Spamalot, the stage musical version of the 1975 comedy film Monty Python and the Holy Grail. At the souvenir stand, I could not resist the T-shirt with the words, "I'm not dead yet." I wore it a few times, and eventually it worked its way to the bottom of the pile in the closet and was forgotten. Little did I realize then just how much that phrase would come to mean this year.
In March, I went for a routine checkup and, as a longtime smoker, I agreed with the doctor that a chest X-ray should be done. Long story short, I was diagnosed with stage 2B non-small cell lung cancer in April. Actually, I was diagnosed with lung cancer; staging was done at the cancer center I went to 10 days later.
I chose to dive into learning all I could about lung cancer during those 10 days between appointments. It is amazing how little hope there is on the Internet. I soon came to realize that the one phrase that seemed to be missing from all of the articles I read was "if found early."
"If found early" is a phrase that is pounded into our heads in all of the cancer awareness commercials.
That same lack of hope started to appear on the faces of family and friends as I broke the news to them. Each of them had a personal link to a sad story about lung cancer. They all came up with a "if you need anything" or "my prayers are with you." Very few said anything like "you can beat this" during that first conversation. Thank goodness I have a longtime friend who not only beat lung cancer, but he did so nearly 10 years ago! This knowledge, along with his constant encouragement, gave me the strength to scream, "I'm not dead yet!" every time I read an article or saw someone trying to hide a tear when they saw me. OK, I didn't really scream it at people, but I did point to the phrase on that T-shirt.
I wore that shirt two or three times per week as I went through two rounds of two chemo meds, 28 days of radiation and the weeks between the end of treatment and surgery. I lost a lot of hair and got dark circles under my eyes. I was very tired most days. Instead of letting myself get worked up while waiting for all the pre-op tests, I took a trip to Maine and Canada to do and see things I had never experienced before.
In August I had extensive surgery to remove the lobe of the lung the tumor was in, as well as a few ribs and parts of some vertebrae that the tumor had been touching. While I spent a week in the hospital recovering, when I could get online, my status updates always included the phrase, "I'm not dead yet." My surgeons told me that the surgery went well and they would see me in two weeks. Recovery was very long and painful, but that phrase became my mantra, and I kept chugging along.
I'm not dead yet! And I don't plan to be for a very long time! At my post-op appointments I was told that I had a "complete pathologic response," which means that the cancer had been completely killed even before the surgery. Here I was, less than five months later, being told I was cancer-free.
Lung cancer is not a death sentence. I know this, because: I'm not dead yet!
Mary Tracy-Dolobowsky is a mother, wife, biker, nature/wildlife photographer, two-time cancer slayer (melanoma & lung) and lung cancer awareness blabber-mouth.
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