The following is a guest post by lung cancer activist and caregiver, Jennifer Windrum in support of Lung Cancer Awareness Month. She is founder of the “WTF? Where’s the Funding for Lung Cancer?” movement that chronicles her Mom’s journey with the disease to increase awareness and funding for lung cancer.LIVESTRONG is about the people affected by cancer – every kind of cancer. Help end cancer stigma and share this with your friends and family.
By Jennifer Windrum
This is my Mom, Leslie Lehrman. She’s 68 years-young and a cancer survivor. While in the hospital (this time with radiation pneumonitis), a friend and fellow cancer survivor posted this message under one of my Facebook status updates about my Mom:
“I have a new favorite cookie. It’s ‘the Leslie.’ It’s the toughest one I’ve ever seen.”
– Bob LeDrew
That is now officially my Favorite. Quote. Ever. While Bob battles bladder cancer, he continues to follow my Mom’s very public fight with Stage IV inoperable lung cancer. She has never smoked a day in her life. None. Zippo. Nada. Zero. Yes, you might want to re-read that last sentence…and then definitely read on.
Monster Cookies For All!
All cancer patients/survivors have to be made of steel to get through all the chaos this disease brings to them and their families. It MORE than sucks. Imagine, then, being a lung cancer patient, where probably the biggest and most painful side-effect comes not from chemo or radiation, but from society itself: STIGMA. No, no, no, no….don’t tune out or run away. I asked you to imagine being a lung cancer patient for a very good reason. It could be you.
Lung cancer is equal opportunity these days. It can strike ANYONE – no smoking required. All you need are lungs. Yep, it’s that simple…and that evil.
In cookie-speak, lung cancer is the largest ever monster cookie. All of those M&M’s, their bright and varied colors, represent each of us – our diversity – and now lump us all together into one cluster. Not even Ms. Green can escape.
This disease and its attached-at-the-hip stigma is killing more of us than any other cancer (more than breast, colon and prostate cancer combined). That’s right, it’s the #1 cancer killer of both men and women (more than 160,000/year), yet it remains the the LEAST funded of the four major cancers by a LONG shot. Stigma. And, apparently, WE are all OK with this. What the heck does that mean? I’ll get there.
First, more key ingredients you need to know:
- 80% of people diagnosed with lung cancer are people who have never smoked or former smokers who quit decades ago.
- The survival rate – It’s virtually remained unchanged for 40 years at just 15%.
- Early detection screening? Yeah, seems like it should be a no-brainer, right? Nope. No standard screenings yet.
Oh, get this – Dr. Apar Ganti, an oncologist who specializes in lung cancer at the University of Nebraska Medical Center, says these monsters are mashing.
“We are finding that what we call lung cancer is actually multiple separate diseases that behave similarly. We have seen the characteristics of “never-smoker lung cancer,” i.e. specific gene mutations even in people who have smoked.”
Stigma: Half-Baked Excuse
It makes absolutely no sense. It boggles my mind beyond comprehension. It defies logic on so many levels. How can we possibly think we are, or can, conquer the war on cancer by continuing to ignore the biggest cancer killer of both men and women? Lung cancer accounts for 30% of all cancer deaths. Chew on that for just a second – 30% of ALL cancer deaths.
Oh, that’s right…that stigma thing gives us a great excuse to keep putting reality off. It’s not a popular, comfy or easy topic, you know. It’s controversial, highly political, divisive, doesn’t win elections and frankly, it’s big business. So, it’s just more convenient for the majority of our government, the medical community and the public at large to grab that stigma crutch and hope they can lean on it a little while longer. Sorry. Time is up. Monsters don’t “do” convenient.
Blame GAME OVER
On top of all of this, WE continue to perpetuate this stigma, preventing lung cancer from becoming the national priority it should be and allowing lung cancer patients and their families to continue experiencing incredible shame, guilt, disgrace and isolation.
Here are just two examples of this stigma in action. Elizabeth and Brooke’s stories are “normal” in the lung cancer world.
“My mother passed away in July after almost three years of fighting…we always credited her doctors at MD Anderson for the extra time. Luckily, we didn’t encounter the stigma that often. But toward the very end, after she did a bronchoscopy, the doctor who did the bronchoscopy (we’d never met her before) came in to give my mother the results. She started asking about family history – my mother told her that her father died of LC at the age of 37 – the doctor asked if he smoked, Mom said yes, and the doctor said, “well, what did you expect? you smoked too.” it is one thing to feel stigmatized by people who may be ignorant or may not know very much about lung cancer, but to hear something like that from a doctor is just disheartening.”
“My mom died of lung cancer 6 years ago. She was only 47 years old. Every single time I tell anyone I lost my mom to lung cancer they assume she was a smoker. I’ve even had people shake their heads at me and say “So young to have done that to herself.”
So, I ask again. Are we really OK with all of this? I’m dead serious. How can anyone think another human being actually deserves cancer? Can we honestly look at these faces and believe, with a clear conscience, that the state of lung cancer is acceptable?
You say, “Yeah, but it’s really more complex than that.” No, it really isn’t:
Some people who smoke get lung cancer. Some people who smoke don’t get lung cancer. Some people who have smoked get lung cancer. Some people who have smoked don’t get lung cancer. Some people who have never smoked get lung cancer.
Again, these “some people” are you, me, my Mom and more than 220,000 who will be diagnosed with lung cancer this year.
The blame game is over. Stop drinking the stigma Kool-Aid. Crush the monster cookie.
I can’t tell you how many times over the years I’ve thought, “Ok, this is it. This is the end.” Somehow, my Mom stands up, wipes off the crumbs and starts over again.
“The Leslie,” indeed.
To learn more about lung cancer and how you can help make lung cancer a national priority, please visit www.lungcanceralliance.org. The Lung Cancer Alliance is dedicated to patient support and advocacy for people living with lung cancer and those at risk for the disease.