LC Stigma Question

[Linda661]

Looks like this is the right forum for this (?)

When it comes to the smoking issue with LC, does the public tend to condemn an ex-smoker as well? I'm asking this because I was taught and have read that after about 10 years, the lungs repair themselves to where they are the same as someone who never smoked -- at least for the "risk" of LC. Heck, even the medical insurance costs out here will drop to a non-smoker rate after 12 months of being smoke-free.

People seem surprised at dx when they never smoked, but if this information is at all true, why don't people seem surprised when it's an ex-smoker?

Linda

[Kasey]

Others may be along with info they are absolutely sure about. But I believe that info about risk dropping to that of a nonsmoker is now changed. I forget exactly what I read, but the risk does NOT drop to that of a never smoker. I think that info isn't broadcast far and wide due to the fact that it may be discouraging to those trying to quit or who already have. Anybody with info???? Hope I'm not making this up!

Kasey

[Linda661]

You're right Kasey....I just found the Lung Assoc. says after 10 years the risk drops to about 1/3 to 1/2 (if I remember right). And then I find stuff like this when I search too:

http://www.journaloftheoretics.com/Edit ... 1/e1-4.htm

Now this fellow's data is old, obviously. But even George Mason University publication in 2006 shows a smoker's risk at 12.5% of getting LC ( http://www.stats.org/stories/lung_cance ... r08_06.htm ) and that's supposedly based on data from the American Lung Association. Surprisingly, they even consider "light" smoking at 15 or less a day (geez, that's almost a pack a day!).

This next one from the cdc seems to suggest that genetic predisposition is the real culprit to anyone getting LC (isn't that also the case with other cancers too?). Whether a person smokes, smoked, or didn't appears immaterial, other than considering that the person's exposure to risk factors such as smoking and/or all the other things that are risk factors for LC over their lifetime just tipped them over their genetic red-line for disease development.

http://www.cdc.gov/genomics/hugenet/ejo ... GSmoke.htm

This issue really gets confusing sometimes, but it really appears that there's evidence out there to support that LC is not something even a smoker "brings on themselves." Just not potically correct to say that, I guess. Yes, stopping smoking or never smoking reduces the risk, but it does not guarantee non development of the disease....it's in the genes (?)

Linda

P.S. To put 12.5% risk in perspective among all smokers, supposedly we all have about a 10-11% risk of getting into an accident every time we get in our car and drive, among all drivers -- this whole stigma issue really has me going in circles and rather confused.

[KatieB]

It's true.. Once you've damaged your lungs, the damage is done. What happens when you quit smoking is that you stop damaging your lungs.

the degree to lung damage per ex smoker is as individual as we are. Some damage can be seen via x-ray as scaring, emphasema, etc... and some people who have smoked for years show no visible damage to their lungs at all.

Then there is the cellular damage that smoking causes- there is no way to tell how much if any, or if those cells will multiply into a cancer...

Quiting smoking REDUCES risks of developing lung cancer and heart disease and other diseases, but the risk is always higher for someone who smoked.

The studies are varied as to when our risk drops and how much time passes for us to consider ourselves "equal" to those who never smoked.

Which brings me back to your post.

The stigma. It does take us in circles! HOW can the stigma be justified? This is what frustrates me daily.

If the stigma is that smokers brought this on themselves- then go back 30+ years ago to when smoking was encouraged and socially acceptable and no one knew the dangers of smoking...then add in the findings that say even if you quit 5 or more (20-30-40 years?) years ago, you are still at a higher risk....now tell me how can this stigma be justified?

Wanna go alittle further?

....yeah, government says, smoking is bad for you, it's more addictive than heroin, but we need the tax dollars--- so go ahead and smoke, keep glamorizing it, we will even offer you rights and a section all your own...but when you get sick, you'll get no support, no research, minimal treatment options, and it will be something we won't ever talk about....

now tell me how can this stigma be justified???

It can't.

I'm an ex smoker. I started smoking at 16 until my dad was dx. Lung Cancer was something that couldn't touch me...because people who got lung cancer were unhealthy people who smoked, used drugs and lived in polluted cities and worked labored jobs that were filled with carcenogens and they didn't wear masks and maybe some people were homeless too.....HELLO...wake up Katie. SOunds pretty dang naive but most people don't know that lung cancer is a real danger...the deadliest killer of all cancers that can affect everyone.

It was a huge wake up call for me when I learned the truth.

So in terms of the stigma- which exists and is the main reason LC is invisible and without funding.....you simply can't justify it.

Like when AIDS came to light and it was called the "Gay Cancer"....that stigma could no longer be justified when women and children and heterosexuals were dx. with AIDS too....

Right now, with the way our government views LC patients and this epidemic, it will be another 20 years before they start to think that it might be time to "do something". I feel like this is their line of thinking....

If you don't get LC, you're LUCKY. If you get LC, you're just SCREWED.

What we must continue to do is speak up. Educate people about LC and the fact that even if you quit...you are NOT safe. Even if you never smoked...you are NOT safe.

We do make a difference, even if it's just one person at a time.

Keep talking, keep advocating, because what we do today might save someone tomorrow.

Host an awareness event, fundraiser or e-mail campaign. Contact your local media during LC awareness month when they are most interested in doing an LC story. We are the ones who have to show the general public that this disease isn't a punishment, and it isn't always about lifestyle choices, and that never smoking or simply quitting smoking will not save you from this disease....that this stigma can not be justified and that those diagnosed with LC need help, need support, need research for the treatment options that will save their lives.

(((((Sorry for my rant.))) Been a long time, so maybe you will excuse me this one.

[Treebywater]

Katie---You laid that out so clearly! Could I use what you've written elsewhere and (of course!) credit you with it (thinking about my blog) or snippets even? If I can't that is quite ok as well, I'm sure I'll need to do a rant of my own sometime soon.

[KatieB]

Absolutely, be my guest!

[Linda661]

Great job, Katie. Another quickie though: can we really say that smoking caused the cancer in the first place? From what I'm finding, yes, it is a big risk factor (the biggest), but no one can really say it causes LC outright -- the stats of getting LC out of the smoking population aren't that high to start with (not trying to argue that reducing any risk under your control is worth it here either...it's worth it) -- that's what confuses the begeezus out of me. And......you know all those taxes they keep adding to cigarettes as an incentive to get smokers to quit, supposedly ("sin taxes")? None of that goes to smoking cessation classes or support like towards LC as far as I know -- what in the world? How many programs would go belly up from lack of funding if everyone really quit smoking? Seems like double talk to me -- get your programs funded from folks who are "addicts" and likely to take awhile to really quit even when things get too expensive.....anyway.....

How do you combat the ex-smoker stigma in public? "They" will still say well, you smoked didn't you? Yeah, you quit, but you should have known better (especially these days). How do we get people to think differently, really with good solid facts?

Ok, I must be rambling, but....what about the person who started smoking when all of the warnings were out there (even though we still had smoking in public places and even though we mostly don't now)...are they up for blame grabs on getting LC? I still don't think so somehow -- it's a risk, yes, but not worth not spending the dollars to try and help.....that risk isn't any higher than the risks associated with lots of other things we all do that are publically acceptable and it still doesn't explain why so many smokers don't get LC at all. People get irreversable damage from doing repetitive tasks at their labor too -- that's what corporal tunnel is. Anything repetitive can cause damage to a body from overuse.

I've seen cigar and pipe smoking linked in with the smoking stats as well -- a true pipe smoker with fine tobacco doesn't even inhale to the lungs!!!! (I don't happen to know about cigar smokers personally)

I probably sound argumentative and I don't mean to at all. This is so frustrating!!!! I just don't really know how to talk convincinly to anyone about this -- my whole being is geared to weaving an airtight persuasive case on things.....I just don't seem to have that yet -- especially when it comes to going after the sheer public apathy on this issue: too easy to discount that only about 20% or so of LC is never smoker population. (yeah, I'm a pretty tough bird when it comes to speaking preparedness on this sort of stuff).

ANYTHING anyone can offer to help expand the depth and breath on this knowledge helps bunches -- I am just really struggling to understand the facts behind the stigma.

Linda

[KatieB]

I don't think there are ever going to be firm facts of what causes LC, just individual deductions on a persons previous history and lifestyle.

There are too many factors, aside from lifestyle choices (as the medical community calls it) smoking, there are environmental factors, heredity, and the randomness that one cell in your body just might go crazy and grow at an uncontrollable rate into a cancer....

For many other types of cancer, there is no known cause, it's like a crap-shoot of who gets it and who doesn't.

Will we ever pinpoint who is truely at risk for lung cancer among the entire population? Maybe one day, but I don't think so.

Do we know what we can do to minimize the risk of getting lung cancer? Yes, healthier living and avoidance of carcenogens and that includes smoking. (which really, healthier living and avoidance of carcenogens will decrease the chances of ALOT of health problems and diseases)

My dad was dx. with small cell lung cancer. Older studies showed that this type of cell malignancy was ONLY caused by cell damage caused by cigarette smoking. In 2002, I learned that asbestos can cause this type of LC too. Then in 2003, I met a man with SCLC who never smoked a day in his life.

We just will not know for sure. The definitive answers you are seeking just don't exist yet.

There are 80% of smokers who will never get lung cancer- throw one of them in a coal mine to work for 10 years and that exposure on top of the smoking gives him lung cancer....

Another man may live until he is 98 and smoked for 80 years without ever getting lung cancer, but he worked on a farm, without pesticides or pollution and he rolled his own home-grown tobacco.

A woman may have smoked for only 1 year in college, lived in the city for 20 years and has a family history of various cancers- that woman develops lung cancer.

Another man has never smoked a day in his life, lives on a farm, exercises everyday and still gets cancer because he was born with a defective gene that produced one too many cells that developed into a tumor.....

The only thing we know for sure is that people who never smoked and who have not been exposed to second-hand smoke and asbestos still GET LC TOO.

That is what we can focus on to eliminate this stigma.

Just as Ryan White did for the AIDS cause, don't rationalize the disease, just make people aware that EVERYONE is at risk. In his case, he was a child and that hit home with everyone.

For LC, it is the fact that we are ALL at risk, not just smokers. Those who never smoked aren't safe either....

This is when I say let's DO something about it, educate the public by letting them know that this isn't a smoking issue or simply a smoking disease, and then others will stop trying to point a finger or lay blame as to the cause of the disease.

OK...that was my last rant

I just hate this stigma too!

[Linda661]

I don't find you to be ranting at all Katie -- this is great stuff you're responding with!

Couple more things :

In the links section here, there is a .pdf "educational packet." Is that something we can print off anytime as a local handout to places such as our local cancer center volunteer-staffed library or the media?

All the reference links listed: if one were to spend enough time investigating those, would you say they would be as up to date as is possible with LC issues/facts/figures for advocacy? Or are there any other sources that one should also be aware of for information?

Oh, and.....could any of us use your latest reply for the media as well? It looks like a potential for something like a conversation with KatieB, LCSC administrator on LCor some such thing -- it reads really well and is packed with so much information! November's coming........!

Thanks,

Linda

[teresag]

can we really say that smoking caused the cancer in the first place?

Emphatically NO! Although the figure often cited claims that 87% of people with lung cancer are or were smokers, but those data are from the Cancer Prevention Studies and date back to 1987 (at the latest) and decades earlier. Google Cancer Prevention Studies to get more info. The ACS has a section on them.

As you know, adenocarcinoma, not traditionally strongly associated with smoking, has become the predominant form of NSCLC in recent decades. The CPS study does not take this into account, because the data are old.

Additionally, the idea of searching for one single cause of cancer is simply wrong. If there were one cause, every smoker would get lung cancer and no non-smoker would get it; clearly that is not the case.

Another flaw in the smoking argument is that studies have identfied many other factors, such as genetic predisposition and obesity, that are linked to lung cancer. None of these is a single cause either, however, and anyone who claims we can wipe out lung cancer if people wouldn't smoke is simply naive.

Human beings are tremendously complex and very few risk factors can be shown to have a simple cause-and-effect relationship with any disease. In fact, I can't think of any off the top of my head. Some might say the tubercle bacillus is clearly the cause of TB, but of course one has to be exposed to someone with the disease for some time in close quarters to become infected, and then not everyone with the same degree of exposure actually comes down with active TB. So obviously there are other variables in play.

I wrote to the CDC asking for more information about the 87% figure, and they affirmed that only 20% of smokers (loosely defined) get lung cancer, but then proceeded to "educate" me about the dangers of smoking. The reply read like a lecture to a bunch of grade schoolers, not a reply to a health care researcher with a PhD. I wrote back and informed them of this, although I held my tongue as to my actual opinion of the uninformed jerk that wrote that email.

Lastly, who is a "smoker" and who is not? I've read studies where anyone who smoked 20 or more cigarettes within the past 5 years was deemed a smoker. This seems like a very low threshold for smoker identification to me. That's 1 pack in 5 years!

So it appears that the smoking issue is a matter of scientific dogma, not fact. Contrast this with the continued subsidies paid to tobacco farmers by our federal government and you do indeed have an unfathomable situation. (Until you remember that government spending, including our health dollars, is about politics, not logic or human well-being.)

Stigma is a fascinating phenomenon, psychologically speaking. Social cognitive theory explains it pretty well: people who are stigmatized seek out others who are stigmatized (we all seek out the fellowship of others like us, after all.) This creates an in-group of "bad" stigmatized persons and an out-group of "good" others. The out-group actively seeks ways to separate themselves from the negatively-viewed in-group (e.g., people with lung cancer), and one way of separating themselves is to blame the in-group for their own problems. Thus, the blame on smokers if they get lung cancer.

I prepared a grant on stigma and its effects on coping with lung cancer and sent it (twice) to the National Institutes of Health, and twice they did not fund it. While some of the reviewers' critiques on the first version were quite reasonable, on the 2nd try they were all fixed, and yet the grant did not do any better. While it is true that they only fund a fraction of submissions, still a piece of me suspects that this issue is simply not politically acceptable to the scientific community.

So, what are we going to do about this? Sign me up for whatever it is.

[Nancy B]

I was born and raised in Missouri which has a high incidence of radon in the ground...I had radiation therapy to my upper chest and face for acne as a teenager...I have lived in air polluted Los Angeles for 30 years, oh, and I smoked - quit 20 years ago.

I have had nsclc and now on my 2nd time of sclc (same lung). So, WHAT CAUSED MY CANCER? I don't care, I just care that I have it and I don't want it. I am so sick of the stigma, I don't feel like I should have to explain "why" I have lung cancer. It makes my cry sometimes.

[KatieB]

Linda,

I would say that those links and resources are as up to date as 2005. I dont' know if anything's changed significantly since then to warrant any changes, but if you want to be certain of what is available, you can wait a couple of weeks as we update our website and make the necessary changes to some of our links since our new merger with LUNGevity.

Yes you can distribute the educational packet pdf., however I've learned in the past few years that hospitals and clinics don't like "paper" flyers or handouts (some will take anything) but most like compact little brochures or cards.

You can PM me if you want brochures or handouts. We now distribute LUNGevity materials and there are some facts and stats on those.

At the time that I make the website changes, I will take the time to review, preview, and update all of our resources and links!

I'm glad you are taking the initiative to do something and advocate against this disease and for LC patients. You might check your state to see if it recogizes Nov. as LC awareness month. If not, write a letter to your governor asking him for a proclaimation declaring Nov. LC Awareness month!

Keep us posted!!

[Treebywater]

So... (Just to try out some new vocabulary), it looks like the Lung Cancer/Smoking stigma is one of history's biggest examples of a post hoc ergo proctor hoc (after therefore because of it) fallacies. Without hiding my head in the sand and realizing full well that smoking certainly increases the RISK of developing Lung Cancer, from what I am reading here it seems that it is unfair and even incorrect to say that smoking is THE CAUSE of Lung Cancer--even if smoking is in a patient's history.

By the way--I don't know Latin or anything. I just watch West Wing.

[Linda661]

Right now I am interested in becoming informed (really informed, not just quote what someone else says and then find I can't back up what they said personally when someone tries to ask me a followup question) -- I find myself seeing the stats on how underfunded LC is, for example, but I don't really know (yet) where that came from or how to use that data effectively or where to check to be sure I'm using up-to-date info. -- gonna' take some time to get comfortable with it. That's why I asked the stigma question in the first place -- I tried to discuss it with a neighbor of mine but found myself lacking enough education to overcome the blank "yeah right" stare I got back -- I couldn't close my "argument" to a solid point that got their attention.

Nancy makes a good point too -- it hurts when all you get is a feeling that somehow you have to justify your illness; you know, my mom's death certificate is marked that smoking caused her death -- that irks me because they really don't know that, but someone using data from death certificates for study will based their conclusions on stuff like that and it will look to the world like a case of LC caused by smoking.....anyway, I'm sidetracked...it's really beside the point (I've got statistics in my background and knowing that kind of stuff just ticks me off -- a set up for garbage in garbage out study results potentially). Smoking isn't really my grudge, just a piece of the stigma puzzle that needs to be addressed objectively without instigating a blame game of some sort.

You may remember my background I PM'd you about Katie......I am relentless on building solid persuasive cases and knowing what I'm talking about before doing anything -- that's the only way I found that works for me to really get good attention and any results; While charisma has good advocacy merits in leadership, for the most part, I haven't found passionate emotionalism such as personal stories to work on it's own -- it's good, but not as the mainstay of an appeal for support or attention(particularly with bigger funders or political figures). That's been true of anything I've ever touched including advocating on community issues for local property rights, stopping certain things from happening in my community, etc. etc. to the County Commissioners and State Reps.

Ever watch the powers that be just zone out for hours at community meetings for public input on an issue when it's person after person just telling their personal story and passionately pleaing for them to do something? It's grueling and it just makes one's heart sink to see that. The ones that know their stuff and present to the interests of the decision makers, and everyone's best interests, not just themselves tend to eventually get their way.

Maybe it's just me, but that's been my experience in my neck of the woods. I'll probably start looking at links, but I'll review when the updates hit. And, teresag, if you've got good medical research links on this sort of stuff, I'd appreciate knowing where I could look from you too.

You've given me a good start Katie, to be certain. And you're right that the disease doesn't need to be rationalized....that's not what I'm up to -- what I want is as solid an answer (or train of thought) as I can find to as many reasons I can think of for folks to say "no" or excuse away this need for support.

Here's one for you Katie: when folks have denied your requests for support (whether it's $, fund-raiser sponsorships, or whatever kind of support you needed), what reason(s) did they give you for saying no, however polite they did it? Those reasons for "no" is what I am out to combat in my preparation as well.

Ok, that's enough on my soapbox, so to speak. Good discussion!

Linda

[KatieB]

My no's stemmed from the train of thought that all cancers and support for cancer should be lumped together.

Of course many an organization would not touch (sponsor) an LC event I was hosting or holding. Their excuses were professional and not detailed- "maybe next year, it's not in our budget, we've promised our sponsorship to someone else this year...blahblah...." Truth is, what is behind all those excuses is the fact that there is a stigma for LC and people are uncomfortable addressing it publically and attaching their names to it. (It is getting better, albeit slowly.

Back to the support road blocks. I even had my own fathers oncology center refuse my help to begin an in person lung cancer support group. The nurse/facilitator was quite territorial, and she insisted that their all encompassing support group for ALL cancer was good enough for everyone and that everyone with cancer had the same issues and could benefit from one another.

uh......no. Most other cancers are "blameless" and there are a zillion independant issues that folks with LC face that other people just don't experience.

Anyway,

There will be more no's that you can count. You just have to keep pushing forward until you get a yes.

[Linda661]

The lumping all cancers together "no" is a good one to know about; Anyone have any others that aren't the generic "nos" that really don't help?

What independent issues are specific to LC and not other cancers that might not be obvious? Lack of funding has generated more than a few problems for us (in terms of the stats on survival, earlier diagnostic testing, etc.), the stigma of blame is a biggie......are we unique in things like having so much difficulty in getting good doctors willing to treat, etc. -- that part surely seemed mighty grueling....what else is unique about us?

A bit later......(edit): OK, this is pathetic! Is it really true that only about 3 or 4 states have Nov. proclaimed as LC Awareness month?!? Do the governors have to do it every year -- Lung Cancer Alliance doesn't have many up for 2006? Geez....so much to learn

Linda

[Connie B]

ACS wanted nothing to do with our Lung Cancer Event at our State Capital Building. We just were trying to bring AWARENESS to LC. ACS wanted nothing to do with it! We asked them two years in a row and neither time did they attend.

Also, when they took my left lung out 11 years go, my family (hubsand, son, daughter, couple of friends) wanted to see what my lung looked like. They went to Pathology and the Pathologist said this as they were looking at my lung and the Pathologist was turning it over and inside out:

"We would have never throught this person was a smoker, we can tell by the discolorations in the lung the red's and blues, and yellow,(she pointed these discolorations out) that she lived in a HIGHLY POLLUTED AREA. And we can assume this person may have been a smoker because of the small emphasema she has right here (she pointed to a small pencil eraser size) amount on the lung. But the Pathologist did tell my family that they would have thought I was a Non Smoker had they NOT read the history and family history report.

Just thought I would share that little bit of info with you.

[gail]

I am on my second cup of morning coffee and went through these posts.

Linda, I feel your fire!!! I can hear your passion from here. You are on a roll and keep it up!!!

I was a smoker from 1974-1984 (college through single life) and quit BEFORE attempting pregnancy. Never went back. I was told if I quit after 10 years it would be like I never smoked.

When diagnosed in 2001 the surgeon called me a smoker. I was irate and clued him in. His answer was "you did smoke" And I reminded him I was a nonsmoker longer than I was a smoker.

Keep your train rolling

gail