Stand Up To Cancer

By Jennifer Stauss Windrum Founder of "WTF? (Where's the Funding) for Lung Cancer?" Campaign & Freelance PR/Social Media Practitioner

November, Lung Cancer Awareness Month, has drawn to a close, but we need to keep the public's attention focused on this diease all year long. Here's why:

This photo is of my mom, Leslie Lehrman. She has Stage IV inoperable lung cancer. Just like my mom - your mom can get lung cancer. Ok, ok, I know what you're thinking, so here's my answer, "No, my mom did not smoke." Great, now that we have that all cleared up, it's time to take everything you think you know about lung cancer and throw it out the window. Total. Do. Over.

Here's the deal, ANYONE can get lung cancer. Yes, I mean anyone. Don't think this excludes any of the beautiful children who fill up your cul-de-sac, because it doesn't. That's not the way lung cancer rolls these days. We are all equal potential recruits to the #1 cancer killer and LEAST funded cancer club. No more "special treatment" for the premium smoking members. Nope. The lung cancer scouts are out. If you have lungs, you are fair game. It's as simple as that.

Simply Scary. Simply Wrong.
Six years ago, my mom's phone call changed everything. Lung cancer changed everything. However, I quickly learned that virtually NOTHING has changed lung cancer in more than 40 years.
What do you mean my mom's chances of surviving this evil disease for five years is just 15%? Oh, wait, I'm sorry, I mean 18% - can't forget those whopping three percentage points we gained over four decades. Unacceptable. And, sorry to tell you, we're just getting started, folks.

In addition to grim odds, here's what else comes with a surprise deluxe LC club package:

No power in numbers: Of the 220,000 diagnosed each year, almost 160,000 will die. Unacceptable.

No early detection screening: That's right, there is NO recommended lung cancer screening test for the top cancer killer of both men and women. (Like many "LC-ers," my mom's lung cancer was detected during a scan for something completely unrelated). Unacceptable.

No standard of care: Not enough genetic testing or researchers collaborating.  There are no effective targeted therapies for 80% of lung cancer cases, so much of the treatment remains a "blanket" approach.  In other words, "Here, try this chemo and let's all pray." Unacceptable.

No funding: Lung cancer is the least funded of the four major cancers (breast, prostate, colon, lung) by a long shot. A VERY long shot. Unacceptable. Negligent.

So, because the government and majority of the medical community and public have long decided that lung cancer is a self-inflicted disease, using the smoking stigma as an excuse for their behavior, or lack thereof, my mom's life will be cut short.  Not only cut short, but largely lacking any kind of quality and empathy and/or respect from some of those closest to her. Yes, some doctors included.  More than sick. More than sad. I honestly can't find the most appropriate word.

Why Everyone Needs to Care - NOW!
The sheer neglect should be an outrage to all of us. Remember lung cancer can come to your house just as shockingly as it came to mine. No, I'm not being overly dramatic, unfortunately.
Let me help put all of this in perspective. However, before I do, I must state I am not pitting smokers against never smokers. Lung cancer is lung cancer. NO ONE deserves it.

Here's why none of us can wait to care. 60% of all new lung cancer cases are diagnosed in patients who have never smoked or former smokers who quit decades ago. One in five women and one in twelve men diagnosed with lung cancer today have never smoked. New research announced last month suggests that lung cancer in people who have never smoked may be a different disease than it is in smokers. A completely different disease. I can't help but wonder if we wouldn't have known this light years ago if that stigma excuse had been brushed aside for even one minute.

Don't get me wrong, I am more than grateful for the research. It's just the new findings appear to be so archaic, it's hard to focus on where we're going, rather than where we've been. Case in point: The National Cancer Institute announced last month that CT scans of smokers and ex-smokers have been shown to cut lung cancer deaths by 20% compared with X-rays.  The NCI even cut the long-awaited study short to announce the results, of course, not without controversy. But seriously, we are just now figuring this out? Shhh....please just don't tell the other cancer clubs.

Lung Cancer Really Likes Us, Ladies! 
A groundbreaking report recently issued by the Mary Horrigan Connors Center at Brigham and Women's Hospital calls lung cancer the "hidden" women's cancer - little known and rarely discussed - yet killing more women than any other cancer - nearly 200 women each day. Dana Reeve's sister, Deborah Morosini, MD, pathologist, Lung Cancer Alliance and Bonnie J Addario Lung Cancer Foundation Board Member says, "As a doctor and as the sister of Dana Reeve, a woman who never smoked and who died of lung cancer at age 44, I see lung cancer as the biggest unmet women's public health challenge we face today."

More proof of this is 22 year-old Jill Costello. Despite 20+ rounds of chemo and 14 radiation treatments, Jill led her team as coxswain on Cal Women's rowing crew to second place at the NCAA Women's Division I Rowing Championships. She graduated with the highest honors from UC Berkeley in May. Jill died in June. Immeasurable tragedy. Seriously, what the heck is going on here? One of Jill's doctors told me that figuring out how and why Jill got lung cancer is the "holy grail" of lung cancer research. Tipping Point and HOPE Jill became an overnight champion against lung cancer, with college students mobilizing across the country to carry her message: "We have to BEAT LUNG CANCER - big time!" More than 5,000 participated in Bonnie J Addario Lung Cancer Foundation's (BJALCF)"Jog for Jill," literally bringing traffic to a stop near Golden Gate Park and creating the largest single event in lung cancer history. Jill's will to live and commitment to help others with this disease has started a movement - a major tipping point for lung cancer. So, "Damn it" and "Thank God?"

WTF" Can We Do?

This whole "lung cancer thing" makes absolutely no sense. I felt/feel compelled to do something to change the injustice of it all. So, I'm using my skills as a former TV reporter turned PR/social media practitioner - along with a great deal of passion, anger, sadness and stubbornness - to help get lung cancer on the map through my personal and politically incorrect social media campaign called, "WTF? (Where's the Funding) for Lung Cancer?" Yes, you get the double-entendre (which is "mother-approved," by the way).

The "WTF?" campaign has definitely struck a chord for many with lung cancer and together, we ARE educating, raising awareness and funding for research. It's just my personal way of trying to create change. Until that happens...and a lot of it, I will keep yelling "WTF?"

Shut Down the Lung Cancer Club
There ARE many good people, foundations, organizations, physicians, researchers, etc., who are completely committed and dedicated to stopping this monster. But if we can't move beyond the stigma and get lung cancer the funding it desperately needs and deserves, the brightest minds and ideas will continue to fall upon deaf ears - as pointless as trying to collaborate during a Metallica concert (minus the...And Justice For All). No progress. Sad, But True.

While the devastating news of my mom's lung cancer diagnosis cemented my future - finally making it clear, my mom's future is anything but. I am sorry to remind you, this could be your mom too...or even you.

Please, don't let that happen. Please help shut down the lung cancer club. It's not good to be #1.

Editor's Note:
Significant and very promising research relating to lung cancer is being done by SU2C investigators: on our "Epigenetics Dream Team", our "Circulating Tumor Cell Chip Dream Team", as well as a number of our Innovative Grant Recipients. The video progress report about the Epigenetics Team -- which features a lung cancer patient -- can be seen at http://www.standup2cancer.org/sutv#channelId=/sutv/service/thelab
(In the list on right, click on "Epigenetics Dream Team on the 2010 Show").
 
In addition, information on this clinical trial and others can be found at http://www.standup2cancer.org/clinicaltrials