Writing an analysis, would appreciate your input

[JYE]

Hello everyone,

I hope this is appropriate to ask in these forums. I am a university student who is writing an analysis on living with or managing an illness, and I chose lung cancer because I had a relative who struggled and lost the battle several years ago. My question for people who are patients or whose loved ones are patients is what specific concerns or worries do you have going through the diagnosis and treatment process for lung cancer. When I say 'specific' I mean pertaining to lung cancer as opposed to other forms of cancer. For example, I've heavily researched the interpretation and responses to the question "Did you smoke?" and its appropriateness in conversation. I would like to learn more, and if anyone would like to comment I would greatly appreciate your help.

Brian

[recce101]

Hi, Brian:

I'd say your request is VERY appropriate, and I applaud you for it.

With your research on the "did you smoke" question you've probably heard many angles, and they've all been discussed here at one time or another. The motivations for such a question range from a callous "you should have known better" or "you deserved it" through simple curiosity and the inability to come up with a better comment to a perhaps unconscious desire to feel safer -- "Everyone I've asked so far has said yes, and I don't smoke, so maybe I won't get lung cancer." Of course we know that's not true, and it seems to be getting less true every day.

One thing that's different about lung cancer compared to many other cancers, and many other serious diseases, is that we seem to be in a fuzzy transition zone between a practically automatic death sentence and a fairly high probability of cure. You can find many examples of diseases that were generally fatal years ago which today can be effectively treated if and when they do occur. This can be said of some cancers as well.

But someone faced with lung cancer has a bewildering variety of information thrown at them. They read statistics which are dismal at best. They also read of people who are said to be cured, and others who were already Stage IV at diagnosis but are alive and doing well years later. They read that we're at the point, or almost at the point, where lung cancer can be treated as a chronic but not generally fatal disease.

Some day lung cancer may be in the same category as smallpox, typhoid, or early-detected skin cancer, but we're not there yet, and that's what I mean about the fuzzy transition zone. People want to have hope, but it's hard to know if their hope is well founded or misplaced.

I believe you'll get lots more comments, and please ask follow-up questions as well. Thanks again and Aloha,

Ned

[Jyoung20]

Very good Brian!!! thanks for choosing this subject.... Many people feel that the lack of funding for lung cancer research is a direct reflection on the fact that lung cancer has such a negative stigma attached to it, namely smoking. Some people feel that people dealing with lung cancer brought the disease on themselves if they were former or current smokers. My platform is that regardless of anyones past smoking or non smoking history we should have enough empathy to recognize the need for better treatments with a better quality of life. By the way, treatment is moving in the right direction just at a very slow pace.

As a cancer survivor we totally understand cancer etiquette. However, a person that asks the "Did You smoke" question obviously does not. It doesn't necessarily mean that person is placing blame although this does happen but it could mean that the person is scared. Looking for a reason "why" you would get this disease. This is a very scary disease but it is survivable.

Hope this helps!!

God Bless!!

Jamie

[blaze100]

Hi Brian, I'm one of those who never smoked and got LC anyway. The biggest obstacle I have is avoiding secondhand smoke - primarily because I think it caused my LC and I feel I have to protect the good lung tissue I have left.

So it was very hard for me to go back to work since the students at our campus smoked right outside the doorways and windows.

It is difficult to travel unless we can find smoke free hotels. Wisconsin and Dakotas are the worst. People there smoke everywhere.

My brother is a smoker, and he insists on lighting up right next to me. He thinks it's a joke.

When I consider the fear of diagnosis, the pain of the surgery, followed by concurrent chemo and radiation, I don't think I'm overreacting.

I remember after they took out my lung. They moved me out of intensive care and into a regular room. One night, about 9 pm, some boys decided it would be cool to smoke in the stairwell next to my room. So there I was with two chest tubes, a slice down my back and side that hurt beyond belief, and I had to put up with even more second hand smoke while I was just trying to live.

I wish they would outlaw cigarettes so I could go everywhere and do everything without fear like I did before LC.

Barb

[wendyr]

Hello Brian and welcome.

Your question re 'did you smoke' is a valid one and you will get some good responses here.

I would like to suggest as part of your analysis that you try to determine why less research money is spent on lung cancer, although it claims more lives than breast, colon and prostrate cancers combined. For example there is about $23k spent per breast cancer death compared to less than $2k per lung cancer death. That's right, less than 10% !!!

The stigma that is still attached to lung cancer is still pervasive which is why the question 'did you/he/she smoke' is still asked. But there is so much more to it than that. Perhaps one day when the true stats come out regarding folks who never smoked the stigma will start to disappear and I have high hopes that people like you will help to get that message out.

Good luck with your research. Let us know how it goes and how we can help.

wendyr

[Debi]

Hi Brian-

I suppose other than the smoking stigma, the one concern that I had, or actually the one thing that was so evident, was the lack of fellow survivors. Luckily I had found this board, but I still was hungry to meet someone in 'real life' or hear of someone who had someone in the family that was a lung cancer survivor. It didn't happen.

A little over a year after my surgery, I put together with Katie's help a booth at an arts and crafts fair in town, to raise money for lchelp. I thought for sure that in the 3 days that the fair ran, I would meet someone who was a lung cancer survivor. Other than Bev, who I already 'knew' through Kamataca on this board, there was no one (although meeting Bev was wonderful). But no one came to the booth and said "Hey, me too!" - I did have lots of women say they were breast cancer survivors.

So I guess I would have to say besides the stigma of smoking, the complete isolation you feel when diagnosed with lung cancer is the roughest. Feeling alone compounds the fear you feel that no one survives lung cancer. Because that's what I always thought - I had never known anyone that said they were a lung cancer survivor in my entire life. So you sort of have this hopeful expectation that someone will have lung cancer (I don't mean that how it sounds) but after awhile you stop looking around for someone and just keep coming online, grateful that there is a community here, and survivors.

I guess that is why I get bitter about pink all over creation every October - in addition to raising all that money, it displays a solidarity and a community that only exists online for us most days out of the year. Again, I don't mean for that to sound wrong, having this is great, but I hope you know what I mean.

Sorry for being so long-winded.

[barbara5452]

Brian, glad you chose to write on this subject. I did smoke and blame my cancer on that, but I also wonder about when I grew up we heated with coal and I can remember the black suet and wonder if that may have contributed to my lc also. I was raised in proverty and some of the places we lived growing up had roaches and I can remember my parents using all the chemicals to control them and often wonder if that too played a part in my lc. I can still remember the fumes from that coal and chemicals. Who knows. But just to let you know it really bothers me when people ask if I smoked, first off I should have never started and second there are so many here who have never smoked at all. Lung cancer makes us feel like outcasts in this world, and I too wish the tobacco companies would someday have to answer to what they have done to so many, making cigarettes so addictive. Good luck on your paper and hopefully you can put some insite on how we feel and try so hard on a daily basis to deal with this cancer. At times its a feeling of doom for me but I bounce back to being positive because I believe that is 50% of survival, the doctors can only do so much. GOD BLESS