Dr. West,
I can certainly understand why you miss the “bubble of enlightenment” And it makes me angry and frustrated to learn the reactions to the education talk.
If we were to follow the “why bother” logic, then we should treat only conditions where a cure is very likely (broken legs and appendicitis) and we should kill everybody when they reach an age of 60-70 years (they are dying soon anyway, so treating whatever conditions come with age, do not pay off). No fat people and no diabetes 2 patients in our health system (or, at least, they should be denied treatment if the do not keep their diet).
It is a comfort to know that we have civilized places like this where people are treated with respect.

kej

If you look at some of the links in this post (http://cancergrace.org/forums/index.php?topic=5338.msg33980#msg33980), at least one Medical School (Loyola University Chicago) and one textbook (The Biological Basis of Cancer from Cambridge Univ. Press) teach that “Lung cancer is a preventable disease” due to smoking.

Updated education seems the best answer, such as:
- A journal article publishing a survey of physicians on the topic of lung cancer, its cause, the viability of treatment (seeing the responses by specialty, years of practice and region would be interesting)
- A journal article publishing a meta-analysis of lung cancer patient demographics (showing smoking status and age, but also other information)
- A book

I would think that funding could be found.

- Joe S.

JoeSperrazza

How very sad. . .especially because from your Tweet today, I understand that you were in Orange County (which is where we live). I don’t know which hospital you spoke at today (there are quite a few of them in our area), but I can honestly say that none of the treaters that we have come across here locally have taken a “why bother” attitude with my Mom - - at least not to our faces (unfortunately, I can’t read their minds).

But, again, how very sad that educated medical professionals feel comfortable enough to articulate (out loud) to their collegues “why bother?” It’s just very wrong and uncomfortable and confusing coming from doctors. . .

Laya

Laya D.

This can take away a little of that nasty taste:
http://www.youtube.com/watch?v=zMHgJJhkCyA
go Katie!

ts

Thanks, ts, that does help, especially since this post was the first thing I read today!

Ned

recce101

Yes, Laya, I was in Orange County, and I’d rather not name the hospital, but I’ll clarify that the people who seemed most derisive of the value of treating patients with advanced lung cancer, especially those who still smoke, were not the cancer physicians. I suspect that everyone who treats cancer has enough exposure to cancer patients to not doubt the value of treatment. But we know that other physicians can still be the gatekeepers who may steer patients away from seeing an oncologist, or may be involved in decisions at their hospital about which treatments are going to be supported, so their views certainly matter. And of course, we’d like to think that doctors of various specialties will have a certain degree of enlightenment about all sorts of patients and medical conditions

And thank goodness we have so many people like Katie and other people here who are tireless and dedicated to countering the stigma directed to the lung cancer community.

Dr West

Dr West,

I think this is one of the most frustrating things that the lung cancer community has to deal with. We have several docs in our area that seem competent and charming, but cannot let go of the “shame and blame” attitude even when addressing an audience of lung cancer patients. I think it is the hardest thing to change in the minds of the general public and that we will only begin to see a difference when some of these docs begin to really understand the issues. I keep telling myself it is a matter of getting out there and educating, but I am not sure some folks will ever be able to see beyond the smoke unless it becomes very personal.

Myrtle

myrtle

There was some more high profile coverage this week - in the New York Times:
http://www.nytimes.com/2010/07/13/health/13brod.html

It’s almost incomprehensible that some doctors have the attitude you’ve described. After all, some lung cancers already can be cured, and more will be cured as research leads to more effective treatments - but the biggest hurdle is changing attitudes that stand in the way of getting more funding for that research. Hopefully, with what you’re doing, and with the help of the Katie Courics and the New York Timeses, those attitudes will eventually change for the better. I hope you venture out of the bubble on a fairly regular basis.

ElroyJ

Thank you for sharing such an ugly experience. You’re not kidding about living in a bubble. I’m constantly surprised at the differences among people who live such seemingly similar lives.
It is astonishing to think that there are physicians who wouldn’t refer a person with cancer to an oncologist but I know if that is so, there is a larger population that wouldn’t second guess those physicians.
Do you think these physicians are still thinking in a 1970 sort of way when quality of life was not part of the treatment equation or even a term? I remember well when morphine was withheld, there were no antinausea meds, x rays were of little use, and on and on…options were slight. I think we need to have an idea of what’s going on inside their heads if we want to change the way they think and operate as our health care providers.

catdander

Shocking.

I choose to get into my car every day and drive. If I get into an accident, lose the ability to walk and it’s all my own fault, am I treated like a fool and refused treatment for my injuries?
No.

It’s so frustrating because smoking is so valuable to all of our governments, worldwide. They’d be broke without smokers (and drinkers for that matter), yet they shoulder less than enough of the blame. There is a whole lot that can be done legislatively so that smoking becomes an ancient practice, eventually. Everyone knows how addictive nicotine is and how smoking is so very difficult to quit, yet the people in charge of the rules about tobacco distribution seem to be looking the other way, whistling in the wind..

I’m a smoker and my husband with NSCLC is a smoker. I still don’t think there is a smoker in this world who would encourage another person to smoke. Deciding to smoke was the biggest mistake of my life, and I knew that a long time before my husband developed LC.

I don’t know what else to say except that it’s not the patients who should be picking up the tab, it should most certainly be split with those who allow tobacco to be distrbuted and supplied so widely.

(I accept that many LC patients were never smokers or have a distant history of smoking - I can only imagine how this subject enrages those)

IrishNelly

A day late to the party:

Irish Nelly: I had a somewhat similar conversation with my twin sister regarding electronic cigarettes. Here’s a delivery system that has improved her lung capacity (she has COPD but not cancer) and the e-cig enables her to control the nicotine level to help her wean off smoking(she no longer smokes tobacco). But, the FDA, along with the American Lung Association and American Cancer Society are trying to ban them. E-cigs use the same medium as smoke machines used in night clubs and haunted houses (propylene glycol (sp?)). The gist of the conversation, at that time, was it seemed odd that something that might help people quit tobacco was being “poo-poohed” by those organizations supposedly set up to help people with lung disease/cancer, but who actually appear to be more interested in their own self-preservation and profit/fundraising at the expense of those they are trying to help who are suffering. And I’m sure that the never smokers have to put up with strangers and caregivers who aren’t familiar with their history asking them “Did you smoke?” That has to be infuriating. When people find out about my diagnosis I have had people say “Oh well, you had that cough, ya know…” As if to say, “Serves you right.”

Eighteen months before I was diagnosed with Stage IV nsclc, I had a doctor berate me for an hour, telling me (after a full body CT scan) that I need to quit smoking, just stop, how hard is it, it’s not that big of a deal. I refused to see him again because he was so mean and ugly to me. I had an allergist(in the 1990’s) tell me after I mentioned nicotine addiction that she had never heard of nicotine being that addictive and that if I wanted to quit, I could. My next visit, she recounted her trip to a conference and all about how she learned that nicotine was very addictive. That was my 2nd and last visit with her.

I’m sorry you had to experience the insensitivity and negativity Dr. West. You don’t seem to share their dismal outlook and you, and a number of other physicians do find there can be some hope, some time borrowed to continue on with life. There are, sadly, still a number of physicians and other caregivers who are biased, who cluck their tongues at us, who don’t want to understand the whys of nicotine addiction (or any addiction..they just spew “You can just stop!”). There are other causes but smoking is the majority of the reason, I’m told, that lung cancer occurs. But as patients, we don’t want to hear about blame and shame for what we might have caused ourselves. We already carry the guilt (and we do carry it, those of us who smoked) and we carry alot of resentment too, for the tobacco industry for lying to us about additives, resentment for local governments who frittered away their tobacco settlement money (my county repaired a foot bridge over a river..how quaint! More went to that bridge than community smoking cessation classes/information/education…you can bet on that! Why wasn’t money allocated for treatment? Because it would have made sense…).

And as explanation for my rant: I was diagnosed in Nov 2008 with Stage 4 adenocarcinoma at 48 years old. I quit smoking that day (even though the hospital staff kept asking me if I wanted a nicotine patch). It’s easier to quit when you’re tethered to a bed by an O2 hose and are medicated for 12 days :-). They told my family that the cancer was incurable. It was a couple of days later that my brother came to me and said “Don’t believe your press.” When I asked him what he meant he said “Just don’t believe your press” I went home on oxygen, diabetic, on steroids and countless meds and chemo side-effects. Six months later, off of oxygen (I weaned myself off), my husband came to me and said “Congratulations!” I said “What for?”. He said “You’re still here. They said maybe six months, but you’re still here”. Ah..that was the “press” my brother spoke about. That was 14 months ago…so that makes, what? 20 months? What if I HAD known what they said about my projected longevity and/or believed it? Who knows? What if I had one of those people you spoke about as a caregiver. I might not be here ranting and spewing as a first post ;-). Certainly, I owe it to my children and my husband to not dwell on the what ifs and to stay positive. And, no, I don’t live in abject denial…it’s subjective ;-). I know that each day is a gift and that any bad day I have right now isn’t nearly as bad as it could be maybe later down the road. It’s just that down the road doesn’t seem to be remotely visible in the distance yet….

And that’s why I like this forum: There’s always some good news or good information to be found here.
I’ve discovered no progression is a good thing. I’ve learned that incurable is not untreatable and that there are myriad choices that I can still make for the benefit of my family and the quality of my life. And I find a lot of inspiration and hope in the members and staff and it comes through in your posts. I’m grateful to all of you, for all of it.

Laura

Here’s another article - this one about a survey showing that the majority surveyed thinks that LC is due to smoking. It notes that is not correct, and that more education is needed:

CTV, Health http://www.ctv.ca/CTVNews/Health/20100721/lung-cancer-stigma-100721/
[b]Few feel sorry for lung cancer patients, survey finds[/b]
“A recent survey finds that many Canadians have little sympathy for lung cancer patients, mistakenly believing that they brought the disease upon themselves. … The survey polled over 16,000 people in 16 countries about their attitudes to lung cancer. The study found that people in countries with lower smoking rates had a greater tendency to admit that they felt less sympathetic to people with lung cancer compared with other types of cancer. … Heather Borquez, the CEO and president of The Canadian Lung Association says the survey results raise important issues.

‘The results of this study raise the question of how stigma towards the victims of lung cancer – smokers and non-smokers alike – impacts the support they receive, particularly from the healthcare system,’ she said in a statement.”

JoeSperrazza

Thank you all for your very thoughtful comments (and apologies to Laura, whose thoughtful and impassioned comment was held in purgatory for a day by the software before I saw and approved it).

Obviously, these kinds of posts aren’t any planned idea (unlike the updates of new information that we try to produce pretty regularly), but rather reflect my thoughts based on what I’m seeing/feeling in daily life (basically, what real bloggers do). Clearly, this resonates with people too.

Thank you all for your perspectives.

Dr West

I just wanted to add one more experience….sometimes we actually get to see the light go on. I am used to folks coming up to our table when we are at health fairs and saying things like “you guys would not have to be here if you would just stop smoking” Of course it is an opportunity for discussion and education and really one of the reasons we are there. But one of our best education outcomes happened at our race last year. A gentleman stepped up to register and made a similar remark to the one of our members working the registration booth. She looked him in the eye and said “my husband died in 13 weeks from lung cancer and never smoked and this is my teenage son who was left without a father”. The guy was totally mortified as he should have been, but turns out to be a local reporter who actually wrote an article for his publication suggesting that people not be blamed for having lung cancer…Very satisfying!
Myrtle

myrtle