The sting of the "stigma'

[-Cheryl-]

The average persons thinking is that cigarette smoking is the cause of Lung Cancer. Yes, we know it is a contributing factor to LC... we are going thru it and have educated ourselves to know that people that don't smoke can get lung cancer too...and many on this board are victims. I would venture to say that out of 100 people I have talked to concerning my wifes cancer... 99 of them have inquired if she smoked. There is no question that the stigma is there and this is obviously something most of us on this board are aware of. However, feeling the guilt for being a smoker is not the only detriment that is associated with this stigma...but of course, it's bad enough.

The thinking of the average Joe.. "It's a shame there is no cure for LC, but gosh, simply don't smoke and you won't have to worry about it. How convenient that is for doctors to use as well. In most cases, they know your chances are poor and it makes it easier for them to explain away there miserable failings with smoking...kinda taking away the blame for not being able basically to save your life. Doctors know that many other people get LC, and don't smoke. On the other hand, how many of you know someone who has smoked for 60 years and never got LC? I can name a bunch. I am by no means condoning smoking, but i am trying to understand why #1) some do get LC that do smoke, #2) Why some don't get LC that do smoke, and #3) Why some do get LC that don't smoke? These are three very important questions. You cant' answer question #1 because of

question #2. These questions really advocate that cigarettes, though very harmful, shouldn't take the brunt of blame for LC.

I am a believer that the word has to get out about the stigmas... The general publics opinion is that you made your bed, now lay in it. This attitude is deeply engrained and it directly reflects how much funding and in what direction the cure for LC is being taken. These people that actually decide the dollar amounts are the "average Joes"...The stigma continues.

The numbers game come into play here. I have petitioned Cure Magazine to get more involved w/ LC and to publish contacting information for this site, LCSC, in all of their publications. This should increase our numbers and make us a stronger force.

In additon, I have produced a :30 Public Service Anouncement to be broadcasted on our locaL radio staion. It starts off... "I have Lung Cancer and I never smoked." This spot gives the web-site address as to increase our numbers.

To go National, I actually think contacting the tobacco companies is the direction to be taken... They have the monkey on their back and would love to releive some pressure. Solicit them to run a National add in the name of this site... One that starts off with pictures of people on this board that never smoked and died of LC.(ie.. our own Becky G),the audio starting with, "I died of lung cancer and never smoked. A 30 second TV spot would be ideal, nationwide! On it would be the contact of the site. This would produce huge numbers and increase our lobby tremendously. Now you are getting the word out that people are not immune to getting LC and that by not smoking, you are not excluded from risk. It does many things...it takes away the guilt for the patient...it takes away the easy excuse for the doctor and it opens folks eyes to put demands on more funding and a smarter way of thinking than what has been done in the past history of LC.

If we are to survive this disease, then we have to get on these keyboards and lobby... people spend hours on this site chatting about LC, and that is great... that is what this board is all about. At some point though, you are going to have to stand on the front line and be heard. No, it's not a pleasurable thing to do,... nothing about LC is good. It's something you HAVE to do. I'm trying every way I can to think of ways to ensure my wifes survival... I need your help.

-Jack-

[teresag]

Jack, thank you for the PSA! What a wonderful thing to do for Cheryl and everyone else with lung cancer!

Our society has newly acquired a disdain for smoking, and sadly it has been taken out on people with lung cancer. For my dissertation, Dave G. generously shared his stories from the military where soldiers were required to have one pack and one carton of cigarettes neatly arrayed in their lockers for inspection. In Vietnam, daily "accessory packs" delivered with their rations included salt, pepper, chewing gum, and other such necessities, including a small pack of cigarettes.

Whether or not one smoked is not the issue. People who got addicted to cigarettes twenty, thirty or forty years ago, before society "discovered" the damage done by cigarettes, are not to blame. They are the ones now getting lung cancer. And obviously the never-smokers are not to blame either.

Last week, I met a man whose dr. gave him an rx for Iressa and said good-bye. Because of the high cost of the drug, the man sought a 2nd opinion. Guess what? Treatable disease: probably limited. He might be a surgical candidate. How many of these people don't seek a 2nd opinion? I shudder to think.

Lung cancer kills more people than any other cancer - period. Lung cancer is the most highly symptomatic of all cancers. There is no excuse for the government underfunding of smoking cessation and avoidance programs and lung cancer research. The dismissive attitude of health care providers toward lung cancer is shameful. We must change this. (Preaching to the choir, I know.) We can do it!

[pecola]

Jack, you are so right about the stigma. We could use AIDS or breast cancer and the remarkable turn-around in public interest, perception and compassion, and ***ding***ding*** dollars for research.

In the early to mid 80's, I lived in an area with a very large and open gay population. Men were dying at an alarming rate and no one, and I mean NO ONE, cared outside of the gay community. The entertainment industry came around first, after the death of Rock Hudson and after seeing such a large amount of their community ravaged by the disease. BUT SADLY, the general public didn't give a flip until they started seeing it affect the so-called "innocent" - meaning those who didn't engage in homosexual or risky sexual behaviors. When the public became aware of all of the married women, retired people, hemophiliacs, and especially babies afflicted with H.I.V. and A.I.D.s, everything changed. They finally had to stop and say, “Hey, maybe it could affect me or someone like me”. Imagine how politically incorrect it would be today to ask a person afflicted with HIV if they were a drug addict or if they were gay? Someday, people have to feel the same way about asking a lung cancer patient if they smoked…because what does it matter? NO ONE deserves this disease or AIDs or Hepatitis C or any other of these stigmatized diseases!

After all of that rambling, my point is Jack...you have absolutely hit the nail on the head. Prevention is important in all illness, but it is not the panacea, as Cheryl and so many others here can attest to. People, besides those affected, actually caring about the people with Lung Cancer is the beginning. The public service announcement is fantastic and thank you for doing it. Thanks to Rick, Katie, Connie, Becky CW, Dave G, Andrea, T-Bone’s sisters, Dr. Sam’s wife Shirley and everyone else (so sorry for anyone I missed mentioning specifically because there are so many more) who do and have done so much.

I've witnessed Lung Cancer's indiscriminate wrath and felt the pain of its loss - surely not like those who lose their spouse or their own lives, but my grandfather was the only father I ever really knew, and I still despise this disease for what it took from me and what it takes from so many others day after day.

I'm young, healthy, mildly articulate, and am not currently one struck by this disease or a caretaker of one with this disease. I'll write more letters; pass out flyers, etc. and do anything I can. Those of you physically fighting this battle need to put your resources toward wellness and curing yourselves, the rest of us should fight for you - whether by caretaking, personal advocacy, or public advocacy. If we can all commit to doing something at least once each week to raise awareness, then what a force we can be! If we do something small such as write a politician, verbally tell others in an informative way, pass out a flyer, or do something bigger like Jack, Katie and Rick, or Dave G are doing we can make a difference!

I challenge myself and the rest of you – those whose own grief, physical symptoms, or caretaking duties are taking up their resources excluded – what can we do this week to help fight the fight and raise awareness?

This week I commit to printing out and taking the site's flyer to my Dr.'s office and asking him to set them out or give them to newly diagnosed patients.

Gina

[teresag]

I ordered a bunch of lung cancer pins from ALCASE and I pass them out at work. Just a simple thing that anyone can do.

[Snowflake]

A thought on some concerns with the medical community:

I have a wonderful family physician. The woman is a GENIUS - not because she knows EVERYTHING, but because she knows what she DOESN'T know and will send her patients to someone that is an "expert" and ADMIT that she doesn't know everything... Imagine THAT! My surgeon was by no means a warm & fuzzy man, but he KNEW what he was doing. I wouldn't go to him for something that was beyond his scope or expect him to deliver a baby, that's out of his scope...

I'm wondering if out there, there are MANY doctors that are too egotistical to admit their limits (i.e. TeresaG's Iressa story).

Yes, there IS a stigma that needs to be breached, but to show pictures of some real people that didn't smoke and died of the disease may not make anyone care. Sad to say, but a reality. Hard facts MIGHT help, BUT, I find it really hard to believe, as cigarette packages have warning labels NOW and people just keep lighting up - new smokers beginning. If Life had a warning label, how many people would truly heed it? Be honest, how many of us would even be researching this disease if we weren't personally touched by it? Sadly, I think the biggest eye opener of this disease is having it or having someone close to you have it. HOW do you breach empathy and ignorance?? That's one helluva battle!

There has to be SOME way to leverage more research into the disease. SOME way to push for more dollars (either dog-earred cancer money or the penalty paid by Big Tobacco) to be spent to find a cure...

I have a wise friend who suggests that it will be found that SOME forms, especially adenocarcinoma will be found to be VIRAL! Ya know, that really doesn't seem so far fetched... Seems to me that some smokers have lung cancer just because, NOT because they smoked, but just because they have it - like non-smokers. I've read that people who have had problems with their lungs in their past - emphysema, asthma, pleurasy, pneumonia, bronchitis - may be at higher risk of developing lung cancer - WHETHER THEY SMOKE OR NOT.

Hard to see what will make the public CARE about lung cancer, Ryan White did wonders for HIV/AIDS, testifying before the Senate before his death. Do we have someone like Ryan White here? I'm NOT a public speaker and lately cannot string together coherent thoughts, but I could WRITE a speech...

So, people...any idea on how to make people care? Can you think of anything that would have gotten YOUR attention prior to be personally touched by the disease? Ideas...

Becky

[-Cheryl-]

The thing is, that everybody knows of somebody who had/ has lung cancer. After all, it is the most widely diagnosed cancer. Most people think, "Well I don't smoke so, I don't have to worry about getting lung caner." I believed that only smokers got lung cancer too. However, this board and its members have enlightened me. Now I want people to know that cigs are the major cause of lung cancer and I educate kids on the dangers of smoking. We really have to catch them before they start smoking with proactive education. Yet, who gives a flip about someone old enough to know better. We need to use our Ryan Whites of this disease to encourage smypathy and support. People also need to know that this disease is non-discriminative, and at an increasingly alarming rate. More and more people who have never smoked are becoming aflicted with lung cancer....could it be ozone depeltion, polution, something in our water???? Who knows, but if healthy young people like Joe B, Heather, and Becky can get lung cancer we are all at risk! How many people could sit through a commercial showing Joe's beautiful wife and kids, and not feel empathy for this man as lung cancer threatens to rob his family of the life they worked so hard to build. If it could happen to this guy, guess what? It could happen to you too. Joe takes care of himself, eats right, exercises, and does not smoke. People will then care, "that guy could be me." He didn't do anything to cause his cancer. Not that smokers deserve this disease. but like Jack said "there is a stigma!" Now, again, I want to emphasize that tobacco does cause cancer and should not be minimized. However, isn't it funny that the Gov. will ban the use of ephedrine, because it killed a few people. Yet cigs contribute to over 260,000 smoking related deaths per year! Our gov. relies heavily on tobacco settlement funding for gov. salary raises, new roads, children's Health insurance, etc. Oh they're all good causes I am sure, but what about using the money on smoking related issues! Why isn't this money spent on research, lung cancer treatment for the indigent, smoking sesation etc. Smokers pay a heavy price for their addiction and I would imagine given the choice, they would want this money spent on helping people that are suffering from smoking related health problems. Hey, why can't they decide how the money is to be used, they're the ones spend close to $5 a pack in some places? WE should demand some of that money be given to us!!!!

Cheryl

[-Cheryl-]

Joe B.?.... Wow, good idea Cheryl... I'm just afraid some hollywood producer would snag him up invisioning the return of Magnum P.I...Ha! -Jack-

P.S Very good suggestion Gina... everyone here has an oncologist and lord knows how many other drs... We ALL should leave contact numbers for the site at their offices.

[Rick]

You can ask anyone you know if they ever knew anyone that died from lung cancer and I guaranteee the answer will be yes.

[Snowflake]

Prior to my diagnosis, no one in my family was ever hit by lung cancer. No survivors, no deaths.

After my diagnosis, an ex-uncle was diagnosed and died. An uncle that had divorced my aunt 15 years prior that I had no further interactions with. THAT would have been my only knowledge of the disease and my uncle was a heavy smoker - the stigma would live on.

I'm sure I'm not the only one...

[Rick]

That is very fortunate. I find myself telling everyone I meet about the site and have yet to find anyone that has not know someone with LC. I would guess I have approached upwards 1000 or so and yet to find anyone. Right now, a co-workers mom is in the battle as well as my neighbor 2 doors down with SCLC. We are helping support them as much as possible currently.

[Andrea]

I AM GUILTY I ADMIT IT

Before my mom was diagnosed, I was not educated and I believe lung cancer was a smoking disease. Yes, I did know two nonsmokers who died of it, but I considered those a "fluke" of nature and not reality.

I was positive that if anything, my mom would have a heart attack, diabetes complications, get breast cancer or colon cancer, maybe even a lymphoma. But NOT lung cancer b/c she quit smoking 25 years ago and therefore I thought her risk was the same as a non smoker, virtually nonexistant. I DID NOT KNOW ANY BETTER!!!!

Now one of my passions is informing people. I PROUDLY wear my LCSC lung cancer t-shirt and I hope it gives a message to people. We can all spread the word by doing little things like passing out flyers and just letting people know

E-mail me your address and I will send you a tote to tote your stuff. People will read it that lung cancer can be a breath away even if you don't smoke.

It is our job to educate people like myself who didn'tknow any better and who now feel terrible about it.

[dede]

I was talking with my mom this afternoon about various people in our family that have died from lung cancer. The list includes three of my maternal grandmother's siblings (2 brothers and 1 sister), the son of my grandmother's brother who was one of the sibs that died from lung cancer, my grandmother's sister-in-law who never smoked a day in her life and was married to one of the brothers who died from lung cancer who also never smoked. Then my brother David Arley Hopkins. Is there possibly a genetic connection?

Just wondering.

[Guest bean_si (Not Active)]

Jack, That's wonderful about the Public Service Announcement! Bravo! And hurrah for everyone has who is working to make us known.

The stigma of cancer was one of the points I made (with a wallop) when I wrote Oprah, CBS, MSNBC, etc. etc.

I just hope if they decide to run with the story, I'll still be around but I won't have to appear on TV.

Cat

[gerbil runner]

So many good points here...

One thing I think is not publicized more is the number of ex-smokers who get cancer 10, 15, 20 or more years after they quit. So even if every smoker in the world quit today, there would still be smoking-related (at least according to current public views) lung cancer 20 years from now !

We treat heart disease aggressively, even though much of it is related to poor lifestyle choices. Drunk drivers who end up in the hospital after car wrecks get the same care as other accident victims. LC should be no different - a cure is far more important than placing the blame.

[BeckyCW]

Gina said:

I challenge myself and the rest of you – those whose own grief, physical symptoms, or caretaking duties are taking up their resources excluded – what can we do this week to help fight the fight and raise awareness?

This week I commit to printing out and taking the site's flyer to my Dr.'s office and asking him to set them out or give them to newly diagnosed patients.

Anybody interested in helping compile a solid list of things to do to raise awareness and fight the stigma? Some things on the list could be ongoing, and others could be a one-time "push" that we encourage everyone to do at once (for the numbers). This would be for those who are willing and able to participate, just to give us all a focus, and it's in no way meant to stop any of the great things people are already doing.

I've been working on some ideas for materials we can use to help spread the word, using the ideas from these and many other great posts. If you have any ideas for a "list of things to do," please PM me or write them here. Thanks!

BeckyCW

Praying for us all,

BeckyCW