The LUNGevity Blog

by Katie Brown

Recently I was asked to ask this question on our social media sites.

What question regarding lung cancer would u most like to have answered by an oncologist or researcher?

I wanted to take a minute to ask my own!

I’d like to ask these medical professionals, WHAT do they think we can change about the medical education system and operating healthcare facilities to get them to recognize that lung cancer isn’t simply a smokers disease? How can we emphasize the importance of not being single focused or narrow-minded?

Is it even a possibility to one day, across the board, have healthcare professionals who look at the entire box and not just the one or two indicators in the box?

It may be an impossibility but I know that there are medical professionals out there that do this already.

It’s professionals like the second opinion specialist who found lung cancer in a 22 year old college student.

Of course I’d love researchers to find a way to detect early stage lung cancer but until that time our best chance at early detection lies with our family doctor and whether or not lung cancer is even on his radar.

by Katie Brown

Recently one of my support group members sent me a link for a “lung cancer awareness survey”. When I clicked the link, it read,

Do You Know About Lung Cancer?

“Lung cancer is something that anyone who has ever smoked should know about. Take this quiz and find out how much you know or don’t know about lung cancer.”

What about those who have never smoked? Don’t they need to know about lung cancer too?

What makes me, and hundreds of other lung cancer advocates like me so angry, is the blatant omission that people who’ve never smoked are also at risk for developing the deadliest cancer killer too. By not recognizing that fact, they fail to educate and warn the public at large that any one of us can get lung cancer.

What’s worse is that this survey is being promoted by a major cancer organization in Seattle WA.

I worry that whomever is in charge of their website content may not be aware that lung cancer affects non smokers too. Things like the environment, genetics, radon and asbestos exposure as well as many other factors can contribute to a lung cancer diagnosis. That never-smoking women under 40 are dying more today than they are of breast cancer.

Instead of informing the general public that ANY of us can get lung cancer, this survey singles out smokers and announces that anyone who has ever smoked needs to know about lung cancer.

While it’s true that smokers and ex smokers have a higher risk of developing lung cancer, EVERYONE needs to know about lung cancer because anyone can get it.

Dear Cancer Organization in Seattle- you’ve really dropped the ball.

Two thumbs down and a big #FAIL on this one.

by Katie Brown

Recently the Chicago Tribune posted a story titled Cancer on the Run. You can read the original story here. http://www.chicagotribune.com/news/opinion/editorials/ct-edit-cancer-20100723,0,1099262.story

It is my personal opinion as a lung cancer patient advocate that this article perpetuates the stigma attached to lung cancer- that it is only a smokers disease. I couldn’t help but reply to this article. I hope others will as well.

—->I’m amazed that this article completely omitted the fact that long-time ex-smokers and life-long never smokers get lung cancer too.

Right now, non smoking women under 40 are dying more from lung cancer than breast cancer. Why? And does anyone care?

It’s the deadliest cancer killer with the least funding, little treatment options and a horrifically low survival rate due to the smoking stigma attached to the disease.
You can remove cigarettes from the planet and there would still be cases of lung cancer. Lung cancer is a disease like all other cancers and should not be a life sentence opposed on those that smoked or a case of bad luck for those that didn’t.

Raising awareness about the dangers of tobacco is a great thing and is essential in teaching our children to never start smoking…but when talking about lung cancer, don’t inflate or perpetuate the stigma that it’s only a smokers disease.

Instead, be a compassionate voice that educates the public about the importance of funding for lung cancer treatment for the cancer that claims more lives each year than was lost in the entire length of the Vietnam war.

by Katie Brown

There’s one thing (aside from the lack of treatment options, horrific survival rates and funding) that a lung cancer patient, caregiver, advocate HATES and that’s the stigma attached to this disease.

I can sum it up in one word, cigarettes.

One of the first things people ask when I mention I lost my dad to lung cancer is whether or not he smoked. As if an answer to that question would make it o-k somehow that he died from it. Lung cancer shouldn’t be a death sentence for those who smoked. People diagnosed with lung cancer deserve treatment options like anyone else with any other type of cancer….

The most heartbreaking part about the stigma is the way it can make a lung cancer patient feel…guilty. Maybe they had smoked at sometime in their lives, maybe they worked around cigarette smoke or carcinogens, maybe they did none of these things and getting lung cancer was their worst case of bad luck. It’s such a shame.

One of my support group members wrote:

Society thinks it’s okay to label lung cancer patients that smoked as people who deserve it,

and always point out when someone has been diagnosed that never smoked, and how awful it is. What a terrible sentence that has been imposed.

I’ve been an advocate for almost 8 years and I’ve seen just about every side to the smoking “issue” and stigma attached to this disease.

Smoking v Never-smokers, women v men, etc…. The major fundamental result of the stigma in every instance is the lack of funding for research, lack of treatment options, lack of compassion and low survival rates.

When someone asks whether or not my father smoked- I could say yes he did, or why do you ask, or yes but way back when..or say his cancer was asbestos related… I’ve said one or more of these answers in the early years because all of it is true…..
but I don’t answer in this way anymore.

At LUNGevity, we are cause agnostic. We don’t care WHY you got lung cancer, as if the majority of the cases could even be attributed to one specific thing to a certainty! WE don’t CARE why. We don’t care if you smoked or didn’t smoke.
We care about CURING the disease…

When speaking to people who are uneducated about lung cancer- I feel like it’s a privilege to educate them. And believe me I do. I love the reactions I get and 99.9% of the time I’ve recruited new advocates to my cause or at the very least opened someones eyes up about this disease…because everyone knows someone whose been affected by lung cancer.
_______________________________________

Did he smoke?

My answer:

Did you know that 60% of people who are dx. with LC are long-term ex-smokers and NEVER smokers? You know what that means? We are ALL at risk. Every one of us. If we breathe, we can get lung cancer!

Did you also know that lung cancer is the deadliest cancer killer with the LEAST funding? Do you know why? Because people ask “did he smoke?” People think that if they don’t smoke, or quit smoking, they won’t ever get it- that they are “safe”. And that question implies that if a patient did smoke, that they somehow deserved their cancer. No one deserves cancer.

LC kills more than breast, colon, pancreatic and prostate cancers combined. The statistics are devestating…and never smoking women under 40 are being diagnosed at an alarming rate. That’s really scary. It means we are ALL at risk.

Let’s go back to smokers who get lung cancer…In America, smoking is LEGAL so I say SHAME on our government for using tobacco money for road repairs and to balance their budgets,instead of treating the diseases and health issues this “legal” product causes. Smokers don’t deserve to die of cancer.

So when you hear about someone who’s been diagnosed with lung cancer, don’t ask if they smoked. Ask them how you can help.

by Katie Brown

One of my support group members asked this question most eloquently. I thought I’d share with all of you my perspective…

Since my diagnosis, I sometimes forget that every sunrise I see entitles me to call myself a cancer Survivor.

Some of us think we can only acknowledge anniversaries in terms of years. But seasons, months, weeks, and even days since diagnosis are important milestones…..how long do you have to survive to call yourself a “survivor”? ~Leslie.

It’s my opinion that if you don’t drop dead upon learning of your cancer diagnosis -you are a survivor.

I’m not making light by describing it in this way and those who have ever heard a devastating cancer diagnosis will understand where I’m coming from. .

So many things makes a person a survivor, and like Leslie mentions above, the first chemotherapy treatment, losing your hair, feeling well enough to make it to a birthday or other special milestones- are all signs of survivorship.

canceradvocacy.org defines survivorship as- Any individual that has been diagnosed with cancer, from the time of discovery and for the balance of their life.

This definition recognizes the struggle to survive that these patients put up every day they live. It also recognizes the many changes that a person undergoes when dealing with these issues on a day-to-day basis.

So whether you make the moment of diagnosis, the date of your surgery or the last date of treatment as your survivorship date, know that survivorship is an individual definition that is different for every one.

The National Coalition for Cancer Survivorship has expanded on the definition of survivor to include caregivers and family members as well.

Cancer affects the entire family.