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new here and I want to know how to change the stigma


lorideecee

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I am new here. My mom died in June 2005 with complications from the treatment of lung cancer. Everytime I told anyone that my mom had lung cancer, they would ask, "Does she smoke?".......I was (and am still) offended by the question. Do we ask women with cervical cancer if they are promiscuous? Do we ask people suffering from liver cancer if they are drunks? I want to change this. I want people to realize that it does NOT matter at all how or why our loved ones get lung cancer, they do NOT deserve it, based on any lifestyle choices they may have made. I am tired of the stigma that lung cancer has, and I want to really DO something in my life to change it.

Lori

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Lori, to start to change the stigmatism of Lung cancer required education. Not eccesarily ours but the publics in general. raise funds for research thru Walk a thons or become an activist/ advocate and write to the media. Gather up facts on Lung cancer and write articles and educate people abut this disease. I am so soory tohear you lost your mom, But am glad you are fighting the good fight in her memory....

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Hi, Lori, welcome to the group. Every few months we have a flurry of messages on this very subject, including what do you say to people... We've had some rather creative suggestions. Click Search at the top, type "stigma" in the first search box, change Display results as to "Posts," change Return first to "All available," and hit Search.

Best wishes and Aloha,

Ned

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Hi Lori. I figured out the low profile of lung cancer quite quickly once I got it. And I got mad. Getting media attention can be quite difficult as I found out. Lung cancer is simply not news but should be. I got media contacts from friends and from my cancer clinic. I ended up having some success with radio, tv and local newspaper, but boy did I have to be persistent. It can be done though if you have the energy. I plan to do more in the future. You go girl.

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HI Lori-

As Ned said, we have talked about that a lot on this forum. Its terrible how people feel like some of us deserve to die. We are the "dirty" cancer as perceived by others.

If you read a lot of the profiles here, you will see how many people here NEVER smoked!!! I did, but I have to tell, I do feel sorry for the never-smokers because they are lumped into the same group as me - and society feels like I deserve this!!!

I think its wonderful that you are trying to do something to advocate for all of us. Good luck and if there is anything we can do to help - let us know!!

Hugs - Patti B.

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I have felt the same way - my mom did as much as she could to get people to understand that this was an "equal opportunity disease" as she put it. It's about getting the word out - joining groups - lungevity, lung cancer alliance, etc - going to events, races, walks. My mom was on the phone with our state senators weekly, and actually got the lung cancer awareness bill passed in Illinois. With lung cancer - it's about having survivors here to fight the fight, unfortuntely we don't have tons of long term survivors, that's why family and friends need to get the word out.

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Dear Lori,

May I offer you a warm welcome.

You have expressed the same frustration as I at the questioning of those with lung cancer on their smoking status.

As Randy has related, it's a matter of education. The public needs to be educated on the fact that other cancers are being connected to smoking.

In more recent news, there are: colon, pancreatic, head and neck. There most likely will be more forthcoming in future.

Here is what I say when they ask about Bill, I say, "Why do you ask?" It stumps them. Then, if they say, "Well, it is supposed to cause lung cancer," my answer to that is the number and percentage of nonsmokers, and the litany of other causes of lung cancer - radon, second-hand smoke, chemicals at one's job, asbestos, and more - not to forget the least known - genetics.

If I feel particularly energetic, the soapbox follows up with other diseases related to smoking: pancreatic, breast, colon, and heart disease(including atherosclerosis).

It may be one individual at a time, but hey, it's a start.

Thank you for bringing the subject up. Stigmas have no place in a medical situation. Actually, no one diserves lung cancer.

Barbara

"lorideecee"]I am new here. My mom died in June 2005 with complications from the treatment of lung cancer. Everytime I told anyone that my mom had lung cancer, they would ask, "Does she smoke?".......I was (and am still) offended by the question. Do we ask women with cervical cancer if they are promiscuous? Do we ask people suffering from liver cancer if they are drunks? I want to change this. I want people to realize that it does NOT matter at all how or why our loved ones get lung cancer, they do NOT deserve it, based on any lifestyle choices they may have made. I am tired of the stigma that lung cancer has, and I want to really DO something in my life to change it.

Lori

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Dear Lori,

I am also new here. My father in law was dx 3/14/08 with prob stage IIIB NCSLC adenocarcinoma, and prostate ca 12/07. The surgeon kept referring to him as a "heavy smoker". (He smoked for 2 yrs, 20 yrs ago.) He worked all his life around automobiles and in the coal mines, which I feel is more than likely the cause. His brother died of brain tumor, mother had colon ca. I had hoped that with the death of Dana Reeve people would stand up and take notice!! No one deserves this!! More people die from Lung Ca alone than from colon,breast and prostate ca combined, yet there is more money being put into research for these types of cancers than lung. According to an article on oncologychannel.com/lungcancer/types.shtml adenocarcinoma accounts for 30% of cancer in male smokers, 40% in female smokers and 60% in male nonsmokers, and 80% in female nonsmokers!! Your chances are actually higher if you don't smoke!!

I am very sorry for the loss of your mother, and pray for the healing of my precious father in law.

Sincerely,

Bonnie

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COPD (Chronic Obstructive Lung Disease) of which 2 of the diseases included are emphysema and chronic bronchitis also gets the same kind of bad rap. If it is lungs then it gets the same blame of assuming the person was a smoker.

Until that changes, the money for research will never meet what it is for other diseases. I noticed that here just shortly after I started reading the postings.

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YOU GO LORI!!!

You just took the first step..Now, find keep that passion and find your niche that will enable you to be an outspoken advocate!!!

There are many, many ways to use your voice:

We have advocates here that have come up with their own unique ways to be passionate about the cause!!

I'm sure others can chime in and give you their experience. Like Katie (with this site),tnmynatt (Breath of Life Foundation) or Nancy (car racing),Everyone that has completed a walk , (sorry I have forgotten names) the lady that flew the hot air balloon from Austrailia, the guys that climbed Mt. Everest. SO many people to help and so many different outlets.

Find what fits you best and GO WITH IT!!

YOU ROCK!!

God BLess!

Jamie

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"RandyW"]Radon gas in the home is also a factor!

And let's not forget about toxic mold...aflatoxin. I have a very good friend that has pretty much figured out that his lung cancer was from toxic mold.

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There are alot of ways to start changing the stigma, but

1) people need to know about lung cancer

2) people need to be educated about it

If you think about lung cancer before it ever touched our lives- did you (me, you, we, us) know that it was something non smokers could get? Did we know that asbestos, other carcenogens, and perhaps genetics played a part?

My answer would be no. I didn't know any of that before my dad was dx., and I became informed and an advocate. And most of the people I talk to who don't know about LC think pretty much the same way.

I will also say I was blown away at the staggering statistics and mortality rates for LC- since the general public RARELY hears about LC. And it's the deadliest cancer killer!

For those who smoke, they might think it's something that rarely happens. For those who don't smoke, they might think it's something that can never happen to them. Both would be very wrong.

Start off by asking yourself what you want to do about changing the stigma.

As Jamie pointed out, there are alot of advocates who choose to advocate on a local level or national level. Some choose to advocate for a specific organization and others raise awareness thru events and media coverage at fundraisers.

I never chose to be an advocate- it chose me.

I just wanted a place that would support those affected by lung cancer- and it's here at Lung Cancer Support Community. As time has passed, I've raised my voice in Washington D.C. with the LAF to lobby for more research $$ for the NCI and NIH and CDC. I've done alot of educational events, and have been involved in or coordinated fundraisers that raise awareness about LC and our lack of research funding. I fundraise for LUNGevity. I work with the Lance Armstrong Foundation for cancer survivorship issues for everyone affected by cancer.

Next month I have having a huge LiveSTRONG Day event in my community. Later this year I will sit and brainstorm with other cancer advocates about how to effectively work together to make a national change. In November, I am coordinating our walk for lung cancer.

So you see, there are alot of things you can do to start changing the stigma. It' doesn't have to be anything like I've described above. You don't even have to leave your computer...WRITE. Write to any and every interest or media group that will accept e-mail comments and write about it. Write to your local representatives, and right now, at election time, write to your presidential candidates and implore them to put lung cancer research and education on their agendas.

Good luck to you. Please keep us posted at how you are doing!!!!

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One excuse I've heard for why lung cancer is still flying under the public's radar, is that when it does strike celebrities, like Peter Jennings and Dana Reeve, they don't survive long enough to carry the fight to Congress, the media, and the public. I don't think there is a Michael J. Fox speaking to a congressional committee about this disease.

Those of us who are surviving, thanks to the new treatments, can try to raise the consciousness of our friends and neighbors, maybe even our representatives in State and US Congress, while we still have the energy.

But for the long term, we need you, our families and friends, to really make a difference.

Thanks.

Susan

BTW - when I answer that question - sometimes even before it is asked - I say

  • 1. although I once smoked, I quit 35 years before diagnosis.
    2. My father and brother both died of lung cancer,
    3. the house I grew up in had a high level of radon

I think that makes the point that there's a lot more involved in getting this disease than smoking.

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