So Disturbed by a Post I Read

Hi All: I just read a post that I can't get out of my head. I am so disturbed by it because not only did it basically say in a roundabout way that if we smoked we deserve lung cancer, but also blamed smokers for giving non-smokers lung cancer! We don't have enough to worry about by dealing with our cancer, we now are supposed to feel guilty because "we gave non-smokers cancer". Unfortunately the person doesn't know much about lung cancer yet comes on a lung cancer board to accuse us.
Back in March, I sent the below email to everyone in my address book. I am hoping it is still going around today, but who knows. If anyone wants to do the same, please feel free to use any or all of my email. Of course, I've learned a lot more about lung cancer since I sent this email, but I hope it still makes its point. It is long and at the end it has descriptions of the different types of lung cancer that I obtained from my Johns Hopkins oncologist.

PLEASE HELP ME SPREAD THE WORD ABOUT LUNG CANCER. LET’S HELP SAVE LIVES.

There are many cancers out there that kill people every day, yet lung cancer always seems to be “swept under the rug” because people believe that those who get lung cancer “did it to themselves”. This is NOT TRUE. There are many people out there who have never smoked in their lives, yet have been diagnosed with lung cancer. More and more young people, people in their 20''s, 30’s, and 40’s are being diagnosed each day with lung cancer. In 2007, there were over 1 million people diagnosed with this horrible disease. An oncologist at Johns Hopkins told me that most people who have lung cancer do not even get it from smoking.

I am a 50 year old healthy woman that was diagnosed with Stage IV inoperable adenocarcinoma lung cancer in January 2008. There were no symptoms except a lump on my neck. I first attributed this to stress. After a couple of weeks when it did not disappear, I went to the doctor. My primary care physician insisted that it was a muscle pull and wanted to wait a couple of weeks to watch it. I knew it was not a muscle pull and after numerous struggles with my physician to get her to order tests to determine what this lump could be, advanced stage IV lung cancer was discovered. My doctor called me on my cell phone and informed me over the phone of this news!

How did I get this? I don’t know. Do I deserve this? NO! Does anyone deserve this? NO! Lung cancer does not discriminate. It can hit anyone at anytime.

Since I’ve been diagnosed, I’ve met people on lung cancer discussion boards that come from all walks of life: marathon runners, vegetarians, aerobics instructors, young mothers and fathers, grandparents, brothers and sisters, all just like you and me. One woman whom I met through a discussion board was diagnosed in January of 2008 with lung cancer, and died two short months later. She was a 46 year-old mother of small children.

When a person dies of a heart attack, do we blame them for eating hamburgers? If a person gets shot on the street, do we blame them for being in an unsafe place? No. We don’t blame anyone with any other type of cancer for doing it to themselves. Why blame lung cancer victims? Whether we smoked or not is irrelevant. We have a terrible disease that nobody deserves.

Please help me get the facts out about lung cancer. Forward this email to everyone you know. Let’s get this horrible disease out in the open and make people aware that those of us who have it do not deserve it and did not bring it on ourselves. There are screenings for all kinds of cancer: breast, prostate, colon, cervical, etc., yet no screening for lung cancer. Why not? It’s too late for me, but we can spread the word about the facts of lung cancer and by doing this, maybe we can help other people get diagnosed early or even get people interested in finding a cure and save lives. If, by forwarding this email we save just one life, isn’t it worth it?

If you want to learn more about lung cancer, below is some information I obtained from Johns Hopkins Cancer Center.

I am signing this email with my name to show the seriousness of this email. Help stamp out this killer disease.

Susan Laurents
Centreville, VA
----------------------------------------------------
Lung Cancer Information (obtained by Oncologist at Johns Hopkins Cancer Center):

Lung cancer, in general, can be separated into two types: small cell and non-small cell lung cancer. Small cell lung cancer comprises approximately 15% of all lung cancer cases while non-small cell lung cancer comprises the remaining 85%.

Small cell lung cancer is highly aggressive, responds well to chemotherapy and radiation, but carries a very poor prognosis. Non-small lung cancer generally grows more slowly, responds less well to chemotherapy and radiation, but has a slightly better prognosis.

Non-small cell lung cancer can be divided into multiple sub-types. Squamous cell lung cancer is one of the subtypes. Most squamous cell lung cancer patients are active or former smokers. Squamous cell cancers tend to be locally aggressive and spread outside of the lungs much later in their course.

Adenocarcinomas of the lung tend to present along the periphery of the lungs and are seen in both smokers and non-smokers alike. Adenocarcinomas tend to spread through the blood stream to locations outside of the lungs earlier in their course of development than squamous cell lung cancer.

When putting together a plan for non-small cell lung cancer, the first thing to understand is how we stage lung cancer and how staging impacts our choice of treatment. In general we group lung cancer into four stages. To understand the staging, you first need to understand how lung cancer spreads. Spread of lung cancer develops through three mechanisms. First is growth of the tumor locally. Tumors as they grow expand in size and can grow into other structures that are near by. The second mechanism of spread is through the lymphatic system. The lymphatic system is part of the cleaning system of the body. White blood cells can move through this system to clear up infections. Unlike the blood system, the vessels in the lymph system carry liquid that is moving slowly. Generally when cancer cells get into the lymph system they involve the lymph nodes closest to the primary tumor first and continue down the lymph vessel involving more lymph nodes along the way. In the lung, there are lymph nodes within the lung as well as lymph nodes that are in the center of the chest around the heart, airways, and major blood vessels. The final way for cancer to spread is through the blood stream. When cancer cells get into the blood stream they can go anywhere blood goes and set up new sites of tumor in those places. These new tumor sites are called metastases. The most common sites for lung cancer to develop metastatic tumors are the opposite lung, liver, bones, adrenal glands, and brain.

Once you understand how lung cancer spreads, the staging system is straightforward. Stage I lung cancer is a solitary tumor in the lung. By definition, stage I tumors have no involvement of lymph nodes or distant spread. Stage I tumors are optimally treated with surgery with possible chemotherapy after resection. Stage II tumors are generally larger tumors. They also may involve local lymph nodes. These tumors are also optimally treated with surgery. We have conclusive evidence that patients with stage II lung cancer that has been resected benefit from chemotherapy after recovering from their surgery. Stage III tumors are more complicated. Stage III tumors involve the lymph nodes in the center of the chest, have multiple tumors in one lobe of the lung, or invade major structures such as the main airway, major blood vessels, or heart. Some of these tumors can be removed surgically, but most are treated with a combination of chemotherapy and radiation. Stage IV lung cancer patients have distant spread of the cancer. By definition this means the cancer has entered the blood stream and is setting up new sites.

When approaching stage IV lung cancer, the main treatment approach is chemotherapy. Surgery and radiation are both local treatments. Surgery only removes the cancer cells the surgeon can see. Radiation only damages the cancer cells that are in the path of the radiation beams. Chemotherapy is a systemic approach since it travels through the blood stream. Chemotherapy can affect not only tumors in the lungs but also tumors in the new sites that may be set up. The one place that chemotherapy has difficulty reaching is the brain. The brain is a protected site and many medications including chemotherapy cannot reach into the blood vessels of the brain. In stage IV or metastatic lung cancer, we generally recommend chemotherapy alone unless there is a specific problem that needs to be addressed such as spread to the brain, a painful site of spread to the bones, or tumor compressing an essential structure such as the blood vessels that go in and out of the heart and lungs or the main airways. In these scenarios we often use radiation to treat that local problem and then use chemotherapy for a systemic approach. Surgery generally does not offer any benefit.

By meadowbreeze
Posted July 6, 2008 at 11:42 pm
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Susan,
I'm not sure if I responded to your discussion being that there are so many responses to your posting.

I do have to say that I become irate when someone asks me if I smoke or smoked. Betsy had the best reply so far, Do you ask someone that has aids if they had unprotected sex? That is so good.

I just cringe when I'm asked that.

Thanks for your posting

Love
linda

By BetsyT
Posted July 7, 2008 at 12:35 am
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Linda,
Glad you liked my response to the smoking question. Please feel free to use it--ALL the time.... We have got to get these people to start thinking about what a cruel stigma this. I hope you are doing OK - Take care, Betsy

By meadowbreeze
Posted July 7, 2008 at 4:48 am
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Thank you Betsy
You are so right just like Susan, we have to show them what an ignorant question that is. It is hurtful, and it makes us as prior smokers feel guilty about what has been done.

I know myself I went thru that guilty stage. I never got angry about having cancer but I did feel guilty and I know that it's not my fault.
I don't need someone asking me that and then having to deal with that all over again. It sends chills up my spine when I'm asked and I know it's coming.

Thank you
Love,
Linda

By Barbietwin
Posted July 7, 2008 at 6:24 am
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Oh my your so right.....people always assume you smoked if you have lung cancer, people need to be educated..... look at dana reeves never smoked....and many others who havent,and i also agree there needs to be more researech on lung cancer.... lung cancer needs more attention.....god bless you all Barbie twin

By Karol
Posted July 7, 2008 at 10:25 am
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The best way to blow away the stigma is to just stop smoking and get the information out to young people that smoking can cause major health problems and speak about the highly addictive side to it.

By gonehiking
Posted July 7, 2008 at 11:45 am
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True. Well, here's a good solution. I'll work on trying to shut down people who pollute the air with poisonous herbicides, and who put PBDEs into household goods that are leaching out in the air and water, and spread toxin-loaded industrial sewage sludge on farm fields so that the chemical dust blows into people's houses, and I'll leave it to you and others to work on getting people to stop smoking. Seems like a good deal to me.

By VJoan06
Posted July 7, 2008 at 4:21 pm
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Susan,

I would like to read the original post that upset you. I can't seem to find it. Was it deleted??

I am 44 and was dx with NSCLC IV. I'm a non-smoker and my parents are smokers. So I was raised around smoke. Radon also causes LC as well as other things already posted here. I don't blame anybody for my cancer. Nobody can tell me how I got lung cancer. Not even the Dr's can tell me. I just pray for a CURE to be found for all types of cancer. I have not been active in cancer awareness since my dx. One thing I got out of reading all of these posts is that I need to get off my butt and get out there and do something for LC awareness. I'm still strong and feeling good so I better get busy. I'm just not sure how to start!!

Vicky

By SusanL1
Posted July 7, 2008 at 4:41 pm
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Hi Vicky:
I think the post was deleted. It's just as well. No point in upsetting a lot more people.
I'm so sorry you have lung cancer. You're right - it doesn't matter how you got it, the fact is that you have it.

There is a man on this website, Ed1, who can help get you started as an adovcate. You should direct a post to him. He's going to help me when I am ready but in the meantime, I've been sending letters and emails to a lot of news shows, TV stations, talk shows, etc. I haven't had any responses yet, but it wasn't that long ago that I started writing these, with most of them sent yesterday. We'll see what happens.
Good luck with your treatments and also your advocacy.
Susan

By lorihope
Posted July 7, 2008 at 7:17 pm
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Susan,
We can all see from the number of responses here that you have really struck a nerve (again).
I spent a great deal of time writing a too-lengthy response over the weekend, and it's not appropriate to post it, but if you're interested I'll share it with you via email. My email is lori@lorihope.com. If you'd like, send me your email addy.
I have a wild but, I think, realizable dream. Not sure I'm the one to realize it, but I'd sure value your opinion about the idea.
Thanks for stirring this up again -- though I'm sorry about the message that precipitated it.
Lori

By beachgoers5
Posted July 8, 2008 at 9:47 am
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Hi Susan- I read your post w/ interest .I am the first to admit I often introduce my mom as a 61 year old never smoker. I guess b/c I do feel there is a stigma the public has created that people w/ LC smoke and deserve it. Let me say I DON'T believe that,but that is definitely the vibe that is out there. I guess I want to protect my mom from that, b/c it is like every time I tell someone she has LC that is the FIRST thing they ask,did she smoke??I sometimes wonder if it is also to make themselves feel safer?like if I say YES then they feel better that they will not be a victim.Sadly we have now been educated to know that nobody is immune to this but I don't think the general public understands that. On top of this my mom was a hairdresser and her oncologist said it is entirely possible all the years of breathing in toxic chemicals gave her nsclc squamous. Anyway I agree w/ you in that now is not the time for blame but the time to all get together and conquer this disease. I tell that to my mom all the time,she is constantly talking about what could have caused it,it really bothers her. I tell her it doesnt matter,that is hindsight, we need to focus on the future. And so far she is doing great,has not had a sick day yet and is 15m past diagnosis. She is active,looks great,has traveled,just bought a new home & is enjoying her grandkids each day. I am sorry you are going through this and wish you only the best. You seem to be a very strong person w/ positive outlook which I think will help greatly. I also think it is great you are trying to educate others about this. I am running a 5k in the Fall and am going to be sending out a mass email to my friends to get donations and to inform them about this disease, and I have included info that it is not just a smoker's disease.Best-Cheryl

By SusanL1
Posted July 8, 2008 at 9:59 am
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Hi Cheryl:
Thanks for your post and I'm sorry your mom has LC. I agree that you should tell people your mom never smoked. That's the only way the general public will start realizing that you don't have to smoke or be around smokers to get lung cancer. I am glad your mom is staying active and feeling well. Good luck on your 5k run and educating people about this horrible disease.
Susan

By ckm9
Posted July 8, 2008 at 11:10 pm
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Hello Susan,

Just wanted to say hello and to congratulate you on your email. Most appropriate!

I used to write alot here on our site but have been staying away for awhile. I do ck it once every wk or so but have lost contact with many old friends since its format changed.

Maybe I've lost that stamina to get our voices heard... such a hard fight when it should not be!! I am still willing but we must really get together and be our own advocates. I learned many things from an old colleague here, SaltyDog. I wish I could learn more from him....he lost his battle, a very wise man. I had a lot of hope with him.

I just read in an article in Ladies Home Journal, about a new book that was written about Dana Reeve's battle with LC. Finally!!! Maybe now is the time for us, survivors, to get together and use this small opening about LC in the media, to let our voices , stories, etc be heard.

I am on vacation but will be back in a week. Maybe we can discuss things further, if you feel it is appropriate.

Take care and hope all is well.

Positive energy and thoughts always.
Claudia

By DaddysWoman
Posted July 9, 2008 at 6:39 am
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I like the article. I wish i was in your address book because i am now finding out alot of info on lung cancer. Don't pay any attention to those negative people. They are still inthe dark about lung cancer. They may never see the light because in some cases they are angry or going through something themself. I will just keep them in my prayers to have peace of heart and an open mind. Keep hope some will change their views.

By jkrn2b
Posted August 18, 2008 at 12:01 pm
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Hi Susan,
I hope I dont offend you or anyone with what I am about to write.
I agree with what you wrote, some people are afraid to admit that they smoke. I was. And how can people actually have the audacity to be mean to someone who has it and say it is our fault and that we deserve it? Im glad I didnt read that post. It wasnt until reading this, I can admit on here I smoke. I was afraid a little afraid to admit it myself. I think to myself all the time, "how in the world can I smoke" after watching my mom die of lung cancer? What is wrong with me? People constantly harp on me, how can you smoke, or they tell me your gonna die from lung cancer cause you smoke. Did my mom die from smoking? Maybe...Would she have gotten it anyway? Possibly..I just dont know, Did she deserve it, DEFINITELY NOT! My mom was the nicest, friendliest, lady you could ever meet. Everyone who met her or came around her, absolutely loved her. She was an amazing lady. She did not deserve it at all. Nor did I deserve to lose her considering I smoke. I knew a guy last year who died of LC and he never smoked. He didnt deserve it either.
I hate that people wanna blame us smokers. I would love to be a non smoker(working on that) but some people dont realize how terribly difficult it is to quit.
Thanks for letting me vent, and again I hope I didnt offend anyone.
Jodi

By texaszan
Posted August 18, 2008 at 12:51 pm
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I have a somewhat different perspective than some of you because I'm the wife of someone recently diagnosed with NSCLC and I have to admit I was a little angry at first. I had on several occasions gotten down on my hands and knees and begged him to quit smoking. When he finally did quit his COPD improved dramatically and I thought we had dodged a bullet, but what we didn't know is that he already had lung cancer it just hadn't made itself known. Most smokers who develop cancer (and yes plenty of non-smokers get it too) have been smoking since they were teens. It isn't just lung cancer that shortens their lives, it's also COPD
I agree that non-smokers need to have more compassion about this addiction, after all many of us non-smokers have an addiction to food, and obesity is also a factor in cancers of all kinds. I had maybe one day of being angry at my husband for bringing this affliction into our lives, but I quickly put that behind me. Now all I feel is compassion, love and dedication to the idea that we now have a common enemy whose name is cancer and together we will defeat it. However, let's not let tobacco off the hook. I hate to see teens smoking. I want to rip it out of the hands because I know somewhere down the line they'll be coughing all night and taking antibiotics for their frequent lung infections or worse; they might be here in our shoes. Today is my husband's first round of radiation. I know in my heart and head and he knows in his heart and head that if it were not for smoking he would not be lying in bed right now in horrible pain trying to get up enough strength to make it to the clinic where they will shoot high powered radiation at him. We both know humans aren't perfect and in his case smoking was a costly mistake. I'm lucky that so far my mistakes have been less so, but I've made big mistakes as well. I think it's ok as a culture for us to be down on smoking just as we are down on other destructive drugs but it's not ok to be down on smokers who are currently suffering. That's absurd, arrogant and cruel. When kids pick up that first cigarette they have no real way of connecting it to this terrible day of radiation and chemo. My husband grew up in the time of James Dean. It was cool. He doesn't feel cool today, however. He feels sad and miserable so yes, we must not judge smokers and we must not assume everyone with lung cancer is a smoker but we do have to work as a society to make smoking a thing of the past and educate people about it's long term affects. Hope this doesn't offend anyone because I love you guys. This board is great and I've learned a lot from hanging out here. It's been a great comfort to me. Wish us luck on this scary day.

By Bette_Tx
Posted August 18, 2008 at 1:09 pm
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Hi Jodi,

My doctor told me genetics play a major factor in whether we get cancer or not. The fact your mother had lung cancer could mean she passed the gene down to you. Smoking might not have had one iota to do with why you got cancer. Either way, no one deserves to get cancer irregardless of whether they smoked.

I agree with Texaszan that smoking can cause other health problems like COPD or emphysema. My mother had severe emphysema and was on oxygen 24/7 the last two years of her life. She passed away this year at the age of 90. Did she have lung cancer? No, but she had uterine cancer at the early age of 40. My dad, his brother, and other relatives have had cancer.

I believe my cancer was genetic, not even from the second hand smoke I was around when I was young. I married when I was 20 years old and my husband didn't smoke.

In the Certificate I received from Texas Gov., Rick Perry, he stated "While it remains true that smokers are significantly more at risk, not enough people are aware that lung cancer - the leading cause of cancer death among both men and women in the United States - can strike anybody."

When I tell people I have lung cancer, I add the fact that I never smoked. It is my way of informing the person I'm talking to that THEY can also get lung cancer even if they never smoked. I see their eyes open wide and then they want to know more about the cancer.

There is so much stigma attached to lung cancer because of the smoking. That is what the LCA and other lung cancer organizations are striving to remove. Recently when I had a mammogram done, the radiologist made a statement like "Wouldn't it be wonderful if they found a cure for breast cancer?" I had to bite my tongue and not say anything about all the funding breast cancer research has received, but I did comment back "Yes that would be great but also we need a cure for lung cancer because it is the No. 1 cancer killer?" She looked shocked as if she had never heard that before and replied with a 'Yes'. I also told her and the doctor who did the ultrasound that I had never smoked and that more and more women are being diagnosed with lung cancer who were non-smokers. I will never tire of trying to inform the public about lung cancer and that it can strike anybody.

Bette

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