The Stigma

[Joppette]

So I heard from an old friend today. The last time I saw her was at an Octoberfest outdoor festival near my home. She did not know I had cancer, and when she saw me with this festive hat on, obviously without hair, eyebrows or eyelashes, her eyes got wide. She didn't want to say anything, which kind of bugs me. I'm very open with people, and don't mince words....much!

So I told her I had cancer, and she wished me well, and off she went. Today I'm on FB trying to quell the boredom of being forced to be home due to feeling so sick. She pops up in IM, and says Hi. She said she had a friend that was just dx with cancer, and her friend was very frightened. She knows that I'm very involved with Gilda's Club.

So she wanted to know if I could recommend resources for her friend. So I asked, "what kind of cancer?". The responses I got was this "She has lung cancer. Poor thing, didn't deserve it. She never smoked."

Over the years, I have learned to not react with instant and absolute anger, but my insides did react with a roil, and adrenaline did surge through my veins. I know, I understand that people do not understand, but it still makes my hair stand on end.

My response was "well, I don't know if you know that my cancer was lung cancer, and even though I did smoke, I didn't deserve it either." I quickly went on to offer resources like Gilda's Club, and this site, so I didn't feel like I was giving her a virtual smack across the face!

So while I made my dinner, I was muttering out loud, with my dog watching, cocking his head back and forth as he listened to my quiet rant (and it was quiet, unlike when I was first diagnosed). I'm like, you know? People get Pancreatic cancer, but do we ask them if they drank? People get skin cancer, but do we ask them about SPF30, and the time they spent in the sun? Women get cervical cancer, but do we ask them what their past sexual encounters were? People get lots of other cancers that are environmentally caused, or as a result of choices they made in life; what they ate, drank, smoked, and many other choices, but we don't ask them about it. Why? Because the stigma that is unique to lung cancer is not there for other cancers.

Society thinks it's okay to label lung cancer patients that smoked as people that deserve it, and always point out when someone has been diagnosed that never smoked, and how awful it is. What a terrible sentence that has been imposed.

I know you all know here, many of us smoked, many of us never did. But we get this cancer thing! None of us, no matter what type of cancer it is, deserve this diagnosis.

I make it a point now to say to folks that ask "I had lung cancer". It is not something to be ashamed of. I need to arm myself with more facts about this disease, so when I get this inevitable question, I can educate the person asking, rather than walking away fuming.

Yes, that is what I will do.

Judy in MI

[jaminkw]

Judy, glad you came right out and told that woman on fb. Also, glad you have us as well as the dog to rant to about this subject. It is often explored with much fire on this site. It was something I never thought about before getting cancer and coming here. I don't remember ever making a distinction about different kinds of cancer when I learned someone I knew had cancer. Cancer was cancer and it was a bad thing. I do notice now that I've become aware that almost every time I say I have advanced lung cancer, please ask "did you smoke?" Sometimes I try to educate but I'm ashamed to say, sometimes I just let it go. Depends on the source. Having lung cancer, I don't want to waste my breath lol.

Judy in KW

[Joppette]

I get that KW Judy. And why waste the time on people that don't know? Here's why I'm passionate about it: lung cancer does not get the funding needed to find a cure. Why? The perception that people that get it brought it on themselves. Even though skin cancer, cervical cancer, cancers of the stomach, pancreatic cancer, liver cancer, colon cancer and others can be brought on by poor choices in life, they are not questioned, and the people that get it are thought of as victims. To me this is horribly wrong.

Second reason: Doctor's do not support pre-screening for lung cancer. You can get tests galore for all cancer types except for lung cancer. I asked my doctor for a CT scan and he told me I had lost my mind. I had no symptoms, therefore I had no lung cancer. When I explained that five people in my family died from the disease, he still balked at the test. I was forced to do the obligatory X-ray, and when it came back negative, I had to lie to get the CT scan. I told him if that came back negative, I'd pay for the test myself, but I insisted on the test. Three of the five people in my family that got this disease quit smoking 20 years before their diagnosis.

Lastly, the pulmonary specialist that I was referred to. I went in, scared and frightened. I'd already been told by Mayo Clinic that it was definitely lung cancer, and I needed to have my upper lobe removed. Pretty traumatic right? This idiot looked at my CT scan, while I was present, and then asked me why I ever smoked. He asked what was wrong with me! I looked him in the eye and said "because I was an addict!" and then told him he was fired! I was furious.

So many people in my family died of various types of cancer. The only one that had shame attached to it was lung cancer. Not everyone that smokes gets this. Some of us just have genes that make us vulnerable to it. Not everyone that gets pancreatic cancer drank. Not everyone that got skin cancer, recklessly spent hours in the sun without protection. Not every woman that gets cervical cancer was of loose morals. I could go on and on.

We could turn the tables around and say that not everyone that gets lung cancer smoked. Not everyone that gets pancreatic cancer drank recklessly. Not everyone that went out in the sun gets skin cancer. Every case of cervical cancer is NOT because the woman slept around.

I am an advocate for taking this stigma and making it go away. It is unacceptable, and none of us should feel shame that we got this disease.

Ok, getting off my soap box. Time for me to get some more sleep as it's 3:43 AM here. I hope I have not offended non-smokers that have this disease. If I have, I am sorry.

But I reiterate, no one deserves cancer of any type. Period.

Judy in MI

[Annette]

I don't really understand how you could offend non-smokers with your very well thought out and stated soap box speach. I absolutely agree with the importance of working to ensure that no one gets this disease - cancer. I balk sometimes at the pink brigade because I know how underfunded lung cancer is - but what the he** - if they cure that then maybe they will move on to a form of cancer that is killing more people now than that one. Like Judy in KW - I either clam up and let the "did you smoke" question go - or I start spouting off about the numbers of people that never did that are now getting the disease. I'm glad your dog listens to you - I have a cat that listens to me. He even ensures that I don't get to loud in my rants.

Now that some of the steam is relieved - hope you have a wonderful day.

annette

[Joppette]

Thanks Annette! You made me smile. I'm off the soap box for now! Venting was good. I won't vent again until I get someone talking to me like this again. LOL! I do tend to be a passionate person, sometimes not for good results.

[ts]

Not a bad place to tell this little story:

Was watching a local TV show this morning as a friend was on talking about pizza and a chef was showcasing thali style service (that should set your google finger flyings.) Next segment, a breast cancer survivor, hospital chaplin Debra Jarvis who wrote a book "It's Not About the Hair!" I liked her and her story just fine, but this is what I heard and realized.

The book title comes from the first question breast cancer announcers receive "Will you lose your hair?" She says it is because they are afraid to ask "Will you lose your life?" People are concerned about these victims.

So what about lung cancer announcements? Our first question? "Did you smoke?" People are really asking "Is it your fault?" They want to know if you are to blame!

This has got to stop.

[jaminkw]

Stephanie, once years ago someone important in my life told me I had a knack for cutting thru the bu@lsh#t and getting right to the heart of the matter. Now, I would like to pass that compliment on to you.

Judy in KW

[beatlemike]

Im glad you spoke up!I can honestly say I didnt hear much of the smoking topic but if I would have I probably would done as you did. I think the only thing that would iritate me more if someone was to make a comment like that to one my friends or family who had lung cancer.

[Joppette]

Thanks Mike & TS, Annette & Judy, it is good to know that there are others that feel the same. So many times, we stuff our feelings because quite frankly we do feel guilty about this disease. And yet? We need to give ourselves a break. It's the fastest growing cancer in the world.

Why? Certainly smoking contributes. But there are a lot of stories here of folks that didn't smoke. Our world is toxic, and it's taking it's toll.

Thanks for your support. For the many other folks that "looked" it's okay. I know this subject is a tough one, and one that many do not want to take on. I'm just stubborn and dumb enough to plow into this issue without reserve because I think we deserve it.

Have a great day.

Judy in MI

[ginnyde]

Judy, I am jumping on your bandwagon. When I tell someone about my husband and the ask "Did he smoke?". My answer is "Why do you ask?" Stops them in their tracks.

[LovesLife]

Hi Judy - I am with you all on this one! Recently I was asked "did you smoke" when a casual acquaintance found out I had been diagnosed with lung cancer years ago and my response was "Neither answer will make you safe". Her mouth dropped open and then she apologized. Afterwards we had a lengthy discussion about the lung cancer stats and I do believe that is one person that will never ask that question of someone again. My motto - educate one person at a time - my firm belief is that they don't mean to be cruel, they simply want a guarantee that they are safe and it won't happen to them if they don't smoke. That belief keeps the anger away and allows me not to take it personal (whether it's right or wrong it's my way of dealing with the stigma!?!?)

Linda

[Joppette]

Linda, thank you! That is such a great way to respond! I really appreciate that. I will be using that, what wisdom and compassion. Truly, educating one person at a time is great, and doing it the way you did it is so much better! THANK YOU.

Judy in MI

[ts]

Judy in KW - thanks. Not the first time I've received that award.

Judy,

When we were getting ready to introduce ourselves at the National Lung Cancer Partnership Conference, one of the things they requested was that we refrain from mentioning smoking status - in our introductions and throughout the conference (have to admit that some of us cheated - when you are on Tarceva, the likelihood is you've found a fellow nonsmoker).

There was a session presented "Moving Past the Stigma" that included speakers from a smoking cessation program and one from Center for AIDS prevention studies. It was a very difficult session for some of us, myself included. It took me too long to figure out why to participate in the sometimes highly emotional discussion.

I've said before that my diagnosis brought me to a point where I finally realized I held some anger (for 25 years!) towards my Mom that she never quit smoking prior to her dx. With my dx, I realized she might have gotten cancer whether or not she smoked. Now, I never thought it was fair that she got cancer, but I probably did blame her a bit. But there is a lot more I understand now.

Back to the conference. Some never smokers have a difficult time not self-identifying, beyond wanting to not be blamed. I realize this is a different issue than onlookers making the bad comment, but it is another side of the story.

1) Yeah, really, it's not fair, we never smoked, don't work with asbestos, don't live in radon-filled houses, eat well and exercise - how did we get this disease?

2) Talking about getting lc and being a nonsmoker makes the problem visible. Like when AIDS hit blood transfusions and babies being born - it made the general public empathetic enough to start help raising $.

3) If we eliminate the stigma and 85% of lc is smoking based, where will the funding go? To the majority problem? Will lc in nonsmokers become an orphan disease? Who will fund research into why this disease is growing in younger females with no smoking history?

So you see, it is complicated, even for me. I self identify, but I also let people know that curing lung cancer for all is the goal - and it is in their best interest whether or not they smoke.

Here's an easy thing I've done recently - I made a small contribution to a friend's Komen 3-day Walk - in the 'How Do you Want Your Name Displayed on the Roll Call?' I put in "cure lung cancer too!" Thinking of adding others with stats! I also asked the walker to share the information that lung cancer kills almost twice as many women as breast cancer every year in the U.S.

Hope this adds to this discussion - sorry for the length!

[Joppette]

Great points ts. And you are so right. This thread has taught me a lot. We certainly want to focus on a cure for the disease, no matter what the cause. It's the disease that needs the funding, not a non-versus ex- or still smoker. Amen! I appreciate your perspective.

I went to a seminar on women and lung cancer, and the doctor said that women are much more likely to get lung cancer than men. He said researchers do not know why YET. They suspect the a hormone connection.

I love what you did with the walk-a-thon. That was very cool.

Judy in MI

[ts]

I went to a seminar on women and lung cancer, and the doctor said that women are much more likely to get lung cancer than men. He said researchers do not know why YET. They suspect the a hormone connection.

Judy in MI

Thanks Judy. I just want to clarify the statement above - I believe it is Non-smoking women are more likely to get lung cancer than non-smoking men.

2009 estimates were 116,090 new case of lc in men, 103,350 in women (but we are catching up!) Deaths were 88,900 men, 70,490 women. In the US only. These are American Cancer Society figures.

[AlexandraX]

I went to a seminar on women and lung cancer, and the doctor said that women are much more likely to get lung cancer than men. He said researchers do not know why YET. They suspect the a hormone connection.

Judy in MI

Thanks Judy. I just want to clarify the statement above - I believe it is Non-smoking women are more likely to get lung cancer than non-smoking men.

2009 estimates were 116,090 new case of lc in men, 103,350 in women (but we are catching up!) Deaths were 88,900 men, 70,490 women. In the US only. These are American Cancer Society figures.

hi there...I am just new here and this topic caught my eyes. I have search on the net that compared to nonsmokers, men who smoke are about 23 times more likely to develop lung cancer and women who smoke are about 13 times more likely. Smoking causes about 90% of lung cancer deaths in men and almost 80% in women....here is my source...I hope you don't mind http://tinyurl.com/2qf3m9

______________________________________

AlexandraX

http://stopsmokinghabits.com/the-basics ... ction.html

[Joppette]

Welcome Alexandra,

Thanks for the research! ts, the doctor that spoke at the seminar was a pulmonary surgeon, and he did say women in general are more prone to get lung cancer. You may not like what he said next, he said that all lung cancers are a result of breathing in poison. He said no matter what, lung cancer is the result. I know that won't be popular here, but I'm just passing on what he said.

He said whether it's asbestos, chemicals, second hand smoke, or first hand, he very adamantly stated, that you don't get lung cancer unless you breathed in something bad.

Now I'm ducking because I don't think his views will be appreciated here.

[jaminkw]

Don't have to duck for me Judy. It just seems like a very broad, definitive statement that I doubt very much is backed up by hard science. Even if it were, it's not very useful unless it is linked to a list of chemicals/compounds etc. proven to be such "poisons" that cause cancer.

What do you know guys? Feedback on this would be interesting.

Judy in KW

[ts]

Lung cancer - if you breathe, you are at risk. I think that sums it up?

[Keli]

I was told by one of my radiation techs " Oh my mom had breast cancer- its totally different" -- Yea it may be but I with you on the Lung cancer soap box -- I will sit and mumble and clean house and mumble -- so tired of my cancer is my fault! Nobody deserves to have cancer!

Do they think about the pain they cause -- apparently not! They just need to judge!

Thank god my friends see me and not what caused it! I tend to be very anti social anymore and thats not like me -- just not willing to have a finger pointed and say i smoked for 30 yrs my fault!

[blaze100]

I've had lots of smokers and non-smokers ask if I smoked. I guess smokers are hoping I will say "no" and non-smokers are hoping I say will "yes"?

Maybe the the non-smokers have a loved one who smokes and they are looking for more leverage to help convince them to quit smoking.

Many of my non-smoker acquaintances think smoking is a stinky habit. They are sick and tired of wading through smokers at the entrances of grocery stores, theaters and rest areas. It makes it harder to generate sympathy for smokers who get LC. Barb