Welcome to LUNGevity's Blogosphere!

In this space, you'll find the voices of LUNGevity's constituents: lung cancer patients and their loved ones, caregivers, scientists, event coordinators and participants, and anyone else who's interested in our progress in reducing lung cancer's mortality rates.

No One Plans For This

April 16th, 2014 - by admin

by Julie Ludemann

Young Adult Cancer Series:  These young adults were asked, how did it feel to learn your  friend had been diagnosed with lung cancer?



“True wealth is the ability to fully experience life.”

-Henry David Thoreau

Until recently, I haven’t had a whole lot of experience with cancer. When I was in high school, my grandmother died after a malignant melanoma spread to her lymph nodes and quickly spread throughout her body. It began with a strange looking mole on her chest, right where her bra strap was. She was too embarrassed to tell her doctor about it until it was too late and the cancer had spread. At the time, cancer felt to me like an old person’s disease. She was in her mid sixties. Looking at my parents now, that age doesn’t seem quite so old, but still, older than me. Older than my friends. Cancer doesn’t happen to healthy, active, young people, right?

Many years later, cancer did happen to someone like me. Someone my age. Someone healthy and active. It was a brain tumor. The treatment was aggressive. He rode his bike to his chemo appointments. He enrolled in clinical trials. He got better, and then got much, much worse. He died almost a year and a half ago at the age of 41. Cancer isn’t picky. Cancer can affect anyone, even people who are healthier, nicer, and more deserving of a good, long life than I am. And then Kim. Lung cancer. What? How is that possible? Kim is my friend. How dare cancer do this to her? I get angry at the blatant unfairness of it all. Kim doesn’t deserve this. Neither did Tim. Neither did my grandma. Neither did anyone, ever.

It’s difficult to really explain how Kim’s cancer affects me without felling like a self-centered ass. Who am I to complain? I find myself talking about things like wrinkles and sore muscles and my jerky boss, and then realizing how thoughtless those comments can be. Who am I to complain about getting older?, or having a job, or really, anything that I can complain about. Heck, I don’t know if I am going to get old. I don’t know if my friends are.

What I do know, and the one thing I have learned from Kim is that you don’t always get to choose what happens in your life. You do get to choose how to deal with it. Sure, I can go on being angry at the unfairness of it all, but does that really change anything?

Is it weird to say that I’m proud of Kim? Because I am. I know there are good days and bad days, but Kim has gracefully taken charge of her situation, and I know there are many people, myself included, who have benefited from her pragmatic yet positive approach to her treatment, prognosis, and living with cancer. When Kim isn’t afraid to talk about it, it helps me to be stronger.

So here’s what I try to do. I try to think before I speak. I try to be more thankful. I try to be a good friend. I try to be a better, more thoughtful person. It doesn’t always work out the way I plan it in my head, but nothing ever does.

No one plans for this. No one expects it. We will all deal with it eventually.


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Kenneth Lourie

Not Yet, Really

April 15th, 2014 - by Kenneth Lourie

While we’re exchanging pleasantries here, in semi real time – although this column will not be most read until March 6th (I need to submit it on Monday, March 3rd as we go to press on Tuesday, March 5th), I feel the obligation, given how last week’s column ended, to update you on the results from my February 26th CT Scan. Presumably, by the title you all have determined that as of this writing, Saturday, March 1st, I have not heard back from my oncologist. Typically, I would have already heard from him, electronically. But so far, not a peep, electronic or otherwise and believe me, I’ve been checking, as you might imagine.

This non-communication has happened twice before that I can remember. The first time, my oncologist did not e-mail results to me because he said, as a presumptive courtesy, he doesn’t like to share bad news in an e-mail. The second time he neglected to send a post-CT Scan e-mail, the news was good and sort of not worth mentioning, he said, because the news wasn’t bad; if that makes any sense at all. Either way, the silence is hardly golden. And the longer I live, the less patience I have for such irregularities.

And what complicates my interpretation of this most recent electronic silence is that I have previously made it clear to my oncologist that my not receiving these post-CT Scan results, however good, bad or indifferent they may be, is far more difficult for Team Lourie than actually receiving them. So now, after we’ve established these communication guidelines (expectations, requirements even) it is a bit perplexing as to why we’ve not heard anything. But is it cause for concern? I’ll tell you what it’s cause for: unnecessary and barely controllable anxiety and stress concerning the interpretation of what any of it definitively means.

Maybe it means nothing because there was an internal computer problem that “sent” e-mails into cyberspace, rather than their intended recipients? Perhaps the staff Radiologist called in sick that day or had to leave town unexpectedly and no replacement could be found – in a timely manner, to read all the X-Rays, CT Scans, MRIs, etc. that day and as a result, results and communication of said results have been delayed? Maybe my oncologist is on vacation or out sick himself or had to leave town unexpectedly and my scan results/his assessment/summary of them are sitting in his in box and were not sent because, as I would understand, he prefers to send out his own e-mails? Heck, there might even be protocol/privacy issues that prevent such communications from being forwarded unless all parties agree in advance. In fact, never before have I received e-mails from any other oncologist. It’s always been Dr. “H.” Or maybe, the results are so bad that, despite our previous conversations on the subject, my oncologist is ignoring my preference in order to tell me in person, since he will be seeing me on Friday, March 7th for our regularly scheduled post-CT appointment? Or maybe the results are so good, he wants to tell me in person and see for himself the joy and relief his care has brought to a patient of his whom he originally characterized as terminal and gave a “13-month to two-year” prognosis? Or, as Paul Harvey never said: you don’t know the rest of the story.

Consequently, what one experiences, as maybe you can tell from the previous paragraph, is a non-stop rearranging and reinterpreting of one’s medical circumstances, potential medical circumstances, real and/or imagined medical circumstances, and anxiety over any and all of them.

Still, I’ve been through this kind of waiting before for medical results. It’s not easy, but I can handle it. Nevertheless, it sort of seems like a waste of my ability to handle such things, given the seriousness of what I may yet have to handle.


How do you deal with “scanxiety” ?


“This column is my life as one of the fortunate few; a lung cancer anomaly: a stage IV lung cancer patient who has outlived his doctor’s original prognosis; and I’m glad to share it. It seems to help me cope writing about it. Perhaps it will help you relate reading about it.”

Mr. Lourie’s columns can be found at www.connectionnewspapers.com. (key word, Lourie)

Read Kenneth Lourie’s 1st LUNGevity blog post & bio.


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Do Organic Foods Need to be Part of a Cancer Fighting Diet?

April 12th, 2014 - by admin

By Corinne Easterling

There have been many studies performed on the healthfulness of organic foods (produced without synthetic pesticides, fertilizers, antibiotics, growth hormones, irradiation, or chemical additives and cannot be genetically modified) but findings are often inconsistent and difficult to interpret.  It is hard to detect the specific effects of chemicals used on conventionally produced foods; researchers often study antioxidant status and activity in exposed populations but this does not necessarily measure one’s total risk of developing cancer. While most studies have not found any statistically significant difference in antioxidant status or activity between people consuming mostly organic foods and those consuming conventionally produced foods, conventional produce can have as much as 30-40% more pesticide residue than organic. It has been theorized that these chemicals used in conventional farming can disrupt hormones in humans and abnormal levels has been linked to increased risk of certain cancers.

In studies of female agricultural workers and women living in agricultural areas, the use of certain pesticides was linked to their increased incidence of breast cancer.  It is important to note that chemicals used in conventional farming can not only remain on food as residue, but can pollute the air, dust, and water of nearby areas.  In Hawaii, heptachlor, once widely used on conventionally grown pineapple farms, was banned after it was linked to an increase in the incidence of breast cancer. Despite the ban, heptachlor remains a soil contaminant in areas that once used the insecticide and its toxic breakdown products have been found to remain stored in human fat cells.

The use of hormones in livestock, to increase size or milk production of animals, has also been theorized to disrupt the endocrine system in human consumers. These synthetic hormones may remain in animal products and can accelerate puberty (early onset is a risk factor for the development of breast cancer later in life), contribute to abnormal cell growth in breast tissue even at levels 30 times below the FDA limit, and increase levels of insulin-like growth factor-1 (IGF-1) which is also linked to increase risk of breast cancer.

The antibiotics used on animals presents their own danger. Though no statistically significant difference in the level of bacterial contamination between organic and conventional animal products has been found, conventionally raised livestock are more likely to be contaminated with antibiotic-resistant types of bacteria.  It is therefore especially important to fully cook non-organic meats and may be advisable for those with lowered immune responses or increased susceptibility to infection to buy organic.

Until more is known, those at risk for cancer, cancer patients, survivors, and caregivers should be aware of the potential risk factors associated with conventionally produced food. People with asthma, allergies, and eczema may benefit from buying organic produce as it has less reaction-inducing residue. Those worried about hormone exposure and those who are particularly susceptible to infection may benefit from buying organic animal products. Though it is impossible to completely avoid exposure, it is important to be aware of the many ways your food could be affecting your health.


Dangour, A. D., K. Lock, A. Hayter, A. Aikenhead, E. Allen, and R. Uauy. “Nutrition-related Health Effects of Organic Foods: A Systematic Review.” American Journal of Clinical Nutrition92.1 (2010): 203-10

Gray, Janet, Ph.D. “From Science to Action.” State of the Evidence: The Connection Between Breast Cancer and the Environment 6 (2010): 1-106.

Smith-Spangler, Crystal, MD, MS, Margaret L. Brandeau, PhD, Grace E. Hunter, BA, Clay Bavinger, BA, Maren Pearson, BS, Paul J. Eschbach, Vandan Sundaram, MPH, Hau Liu, MD, MS, MBA, MPH, Patricia Schimer, MD, Christopher Stave, MLS, Ingram Olkin, PhD, and Dena M. Bravata, MD, MS. “Are Organic Foods Safer or Healthier Than Conventional Alternatives?”Annals of Internal Medicine 157.5 (2012): 1-19

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Katie Brown

Wanted: Lung Cancer Advocates

April 10th, 2014 - by Katie Brown

Lung Cancer Awareness is about engaging communities in a dedicated effort to increase survivorship and quality of life for everyone affected by lung cancer.  To really accomplish that will take a virtual army of lung cancer advocates, but it’s an effort everyone can join TODAY.

Make the commitment to be a lung cancer advocate.

Never underestimate the power of one person to make a difference!

Every time you talk to someone about lung cancer, you are helping to make inroads in bringing lung cancer into the national consciousness. That’s what grassroots advocacy is all about.


  • Having lots of committed people who are willing to stand up, speak out, and educate the public shows that lung cancer is important and deserves attention. The more people who are engaged, the more grassroots power we can demonstrate, because the impact of collective action becomes more visible.
  • Action fuels a sense of energy and community: Grassroots action creates energy, excitement, and momentum that gives lung cancer issues “buzz” and gets the attention of the community and its leaders.
  • Grassroots advocates can influence policy decisions by raising awareness and educating decisionmakers who can change the rules regarding lung cancer and funding for lung cancer.
  • Grassroots action taps the hope and inspiration of people’s personal experiences and translates them into concrete and meaningful change on a community scale.
  • Grassroots action often attracts others who care about lung cancer. The energy, enthusiasm, and results draw people together as they see other supporters speak out, and that may result in a chain of events and action.


Write letters. Write your local leaders and let them know the impact that lung cancer has had on you.  Get them to issue a proclamation in honor of Lung Cancer Awareness Month, or a fundraising effort. Contact the health editor of your local newspaper and ask if they will do a story on lung cancer. Write the paper a letter and share your story along with the lung cancer facts.

Speak up!  Take the opportunity whenever you can to talk to doctors, nurses, health care workers, businesses, and employers to increase their awareness of lung cancer.

Hold a fundraising event. LUNGevity has the largest national network of grassroots events aimed at raising money for lifesaving lung cancer research and creating awareness about the disease. Dedicated and passionate volunteers from across the country plan local fundraising events to help LUNGevity fund its research program, bringing together tens of thousands of lung cancer patients, survivors, families, friends, and advocates in 25 states (and counting!) to change the course of lung cancer.

Breathe Deep events  are fundraising walks and runs, organized by grassroots volunteers with support from LUNGevity staff, that raise money and awareness for lung cancer research. The guidance LUNGevity provides can help make it a beneficial, enjoyable, and successful experience. There is a lot of FUN in FUNdraising!

The Advocacy Toolkit provides lots of ideas for other types of fundraisers as well. Email events@lungevity.org to learn more about fundraising or to tell us about your fundraising plans.

Provide literature. Request “Get Connected” brochures and Lung Cancer Facts Cards from LUNGevity and ask your nurse, doctor, or social worker to place them in the educational area of your hospital. Click here to request literature and find 10 simple ways to increase awareness every day!

Share you story! If you have been affected by lung cancer, share the facts and your story to raise awareness and hope that with more research there will be more survivors!

YOU can be an advocate, and LUNGevity’s Advovacy Toolkit will give you all the information you’ll need. Every effort makes a difference – let’s get started today.

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Jill Feldman

Believe. Hope. Endure…Create Change

April 9th, 2014 - by Jill Feldman

It is hard to believe, hope, and endure when it comes to lung cancer.

It’s a constant one step forward, two steps back; an uphill battle. I think back to when LUNGevity first started; I am proud of how much we have accomplished in the past 13 years, but then something happens or someone dies, and I am reminded of how far we still have to go to fight this disease. My dad died 31 years ago; the five-year survival rate was 14.5%. My mom died 16 years ago; the five-year survival rate was 15%. My friend and LUNGevity co-founder, Missy, died seven years ago; the five-year survival rate was 15.5%. Today, the five year survival rate is 17%. I am thankful to be part of that 17%, but it doesn’t change my long term prognosis. How can we not be further along in the fight against this insidious disease?

We know that the perpetuated stigma that lung cancer is self-inflicted is largely to blame for the lack of empathy, support and funds raised for research. From the government and physicians down to the individual, there are social biases. Every other cancer diagnosis elicits empathy with responses such as, “I am so sorry,” or “What can I do to help?” The response to a lung cancer diagnosis is usually, “I didn’t know you smoked,” or “How long did you smoke?”  Would you ask someone with melanoma if they worshipped the sun, someone who had a heart attack if they ate a lot of McDonalds, or someone with cirrhosis of the liver if they were an alcoholic?  The physical and emotional pain and stress are enough for any cancer patient to endure, but then imagine feeling blamed, shunned and shamed.

The shame and blame have to stop now; it’s toxic and we (patients) are dying because it creates a serious barrier to diagnosis, treatment and acceptance in the community. Anyone with lungs can get lung cancer, ANYONE! The face of lung cancer is diverse; it’s your mom, your dad, sister or brother, your friend or your child. In fact the face of lung cancer could even be YOU. Lung cancer doesn’t discriminate, and neither should society. The World Health Organization recently declared outdoor air pollution as a leading cause of lung cancer. This finding hasn’t received much media attention, despite the significance; we breathe = we are at risk for lung cancer. It is a deadly problem!

My involvement with LUNGevity has been rewarding, exhausting, frustrating, exciting, etc. I have witnessed and celebrated the creation of a lung cancer community, watched the funds we raised help advance research and increase support for lung cancer patients, but it’s not enough. We need to make lung cancer a national priority. We need to create change. It would help if we had a champion. We need a champion – many champions.

It is maddening to me that there are ‘celebrities’ affected by lung cancer who have respected and influential voices – who can reach large audiences and really make a difference – but aren’t stepping up to the plate and speaking out for lung cancer!  In fact many won’t even acknowledge their lung cancer diagnosis or death, and it’s disheartening. A few examples are: The Jimmy V Foundation website doesn’t mention that Jim Valvano died of lung cancer (and that is not where the millions they’ve raised have been donated). You have to dig deep to find that Paul Newman died of lung cancer. Bryant Gumbel told his viewers that he had “cancer removed from his chest.” These are the very people that could easily provoke change and become our champions, yet are actually perpetuating the stigma and making things worse by avoiding any affiliation with the disease!

Media are a vital conduit for health information, and lung cancer is a major health issue, it is an epidemic. Lung cancer is the number one cancer killer in the country, yet there hasn’t been a ‘health alert’ to educate the public. Why? Lung cancer is not a story that journalists and editors think their audience would be interested in; it isn’t seen as ‘media friendly’ or newsworthy. Here’s an alert: “Lung cancer isn’t going away!” What will it take? How many of us have to die, or who has to die, for someone to take a stand against lung cancer?

It’s up to us, the lung cancer community, it’s our challenge. We need to rethink lung cancer and create change. I know firsthand that we have made great strides, but too many of us (patients) are still suffering and dying; the survival rate has only increased a few percent in the past 30 years.  Lung cancer isn’t going away, but patients are living a little longer and we are able and willing to storm the Hill, educate the public, raise awareness, tell our story and create change. But, we need help. We need more advocates — more voices, from all stakeholders.  And then all together, we can be the champions we so badly need.

Many advocacy groups have started since LUNGevity was founded 13 years ago, and each one is doing incredible work to educate, support, raise awareness and raise funds for lung cancer research. Now it’s time to create a common platform, a common agenda and become one voice; a louder voice with a bigger presence. As past president of LUNGevity, I understand it’s not that easy, but now as a patient I also understand the sense of urgency, the distress and the fear that things aren’t moving fast enough. We need more than a collaborative group that provides resources.  We have to find a way to create a catalytic collaboration and together create a movement that will result in true systemic change — change that will prolong and better our lives.

We share a vision, a core belief and we share similar stories; our desired result is the same. But, the scope of what we need to accomplish is much greater than fighting for tiny pieces of the diminishing pie. The lung cancer community needs to come together and build one community; an organized and educated community that demands empathy, respect and funding for research!

I look at Breathe Deep North Shore, one of LUNGevity’s grassroots events, which will be held on April 27th at Deerfield High School (you can still register or donate to my team http://events.lungevity.org/goto/jillsteam or another team) will be over 1,500 people coming together; patients and their loved ones, businesses, physicians, political leaders — all to support and create change. This effort is rooted in one little town of 18,000 people. Imagine what we could do, what noise we could make, if we all came together across the nation, even if it’s just for a day.

Individually we can make a difference, but together we can do more, be more, impact more and create change!  If we Believe and Endure, Hope will transcend all impossibilities.

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