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
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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 jkrn2b
Posted August 18, 2008 at 1:19 pm
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Hi Bette,
Thanks for writing. I had to reread what I wrote, I am sorry if I gave you the impression I had cancer, I do not. My mom recently passed away from lung cancer. I do not have it. I do however still smoke. I am trying to quit, have cut down alot, but im still hanging on to my disgusting ciggerrettes. I know I shouldnt, but I am just having a hard time. My biggest problem at the moment is trying to get past being depressed about my mom's death. Im trying to get past one hurdle at a time.
Jodi

By Bette_Tx
Posted August 18, 2008 at 1:26 pm
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Oh ok Jodi,
I misread your post. There are genetic tests that can be done to see if you have the gene that causes lung cancer. The tests are expensive and not all insurance companies cover it especially if you haven't been diagnosed with lung cancer. Smoking might not have caused your mother's lung cancer though and that is what I wanted to emphasize.

My son who is 39 years old has been smoking since he was about 22. I thought he would quit when I was diagnosed with lung cancer but it only made him smoke more haha. I don't harp on him to quit - it's his decision and choice. I'm sure he would like to quit because of the health problems that could occur in the future but I know the addiction is very powerful. He's a nervous guy and it would probably be next to impossible for him to quit.

Best wishes to you.

Bette

By DanH
Posted October 29, 2008 at 1:12 am
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Hi Susan,

I am 35 and have smoked for 22 years. My mom cyrrently has stage IV LC. Does anyone have a less stressful way to quit? I have tried it all.

God Bless,

Dan

By TinaIrena
Posted October 29, 2008 at 3:02 am
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Susan,
How do I send this to people? Or better yet post it on my caring bridge page. Its very important information I'd like to share. Keep on keeping on girlfriend.
Love you,
Tina

By FrankClem
Posted October 29, 2008 at 4:17 am
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Hey Dan,

Quitting smoking, in my opinion, is probably one of the hardest addictions to overcome. To answer your question, it begins in the head. You can pick up all the patches, Chantix's, nicotine gums, even handcuffs, but you'll find a way to smoke if your head isn't in on it. Throughout all the years I smoked, 35 of them, I quit countless times so I thought. I really never quit though, because my head wasn't in on it.
And to everyone out here, great dialog. It took me quite a while to read all the posts but it was well worth it. Listing the type of cancer one has should only be used for medical and treatment purposes. Cancer is cancer. But in stating this, I'm living in a world that will never see that happen. I was sitting in the doctor's office waiting for my radiation treatment and I started up a conversation with a woman sitting next to me. We told each other our situations. When she asked if I had smoked and I told her yes, she asked if I had regretted it. First of all, I started way to young to have been able to make an adult decision (age 13). A thirteen year old could walk into a store and buy cigarettes at that time. It wasn't such a health issue back then. As far as having regrets, I don't look back and to the "what ifs". I've moved forward to the "what is". That's where I'm at. It's a healthier way in beating my cancer.
And, Susan, keep up the good work!
~Frank

By kosby
Posted October 29, 2008 at 7:34 am
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I get very tired of the smoking issue -many of us have struggled with the smoke or not to smoke issue. After my dx I cut down considerably, after treatment, I went on chantix and then when I had my first scans and it was back, the first thing I did was light a smoke. No guilt, no nothing, I knew it would be best if I didn;t, but I did. When I got really sick and ended up in the hospital for 8 days with 2 strains of pnemoinia I out a patch on and slowly over the next few days I wasn't coughing and hacking as bad.

Over the years of 40 years of smoking I have quit may 10 - 15 times - but this time I believe I am through. There comes a time when each of us is ready and only we can decide that.

But there is not a soul on earth that shuld think or believe or blame smokers as being stupid - it is a worse addition that drugs, alcohol and many others - and mainly because our government makes big $$$$$$$ off off of it.

Kathy

By SusanL1
Posted October 29, 2008 at 7:54 am
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Hi Dan. I would like to say the magic bullet for me was Chantix, but I became psycotic and had to get off of it. For almost two months though, I didn't even want a cigarette, even when I was around smokers. The problem was that I got very depressed and my husband said I was acting very moody, constantly yelling or snapping and him and not listening to reason (I don't know why he thought something was different, haha). Anyway, I went to my doctor and he wouldn't let me stay on it. This was about a year ago. A few months ago, I asked for it again hoping the moods would change, but doc won't give it to me. FrankClem is right - it's in our heads. I've been on patches for almost 10 years and can't get off of them. I know it is psychological, but...
Good luck whatever you try.
Susan

By SusanL1
Posted October 29, 2008 at 7:55 am
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Frank. When a person asks me if I smoke/ smoked, I just say "you know, you don't have to be a smoker to get lung cancer, and I start going into the facts about it". Believe me, they are sorry they asked!
Susan

By amymaura
Posted October 29, 2008 at 9:31 am
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Hey Dan -

Have you tried the Quitlines or www.becomeanex.com ? I've heard good things about the website, and the Quitlines offer telephone support. These might not be enough stand-alone strategies, but they can help supplement things like Chantix, the patch, gum, etc. The Quitline number in AZ is: (800) 556-6222 and their website is www.ashline.org .

Hope that helps!

Amy

By DanH
Posted October 29, 2008 at 9:41 am
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Hi SusanL and FrankClem

Thanks for your support. I was on Welbutrin several years ago and was smoke free for 14 months. When I tried it again it did not help the craving.

As part of lung cancer awareness month our foundation is giving silicone bracelets to Jr High and Elementary aged children. On one side it says " I promise to be smoke free" on the other side it has our site URL. This years campaign is only going to hit about 2500, next year my goal is 25,000.

I was supposed to speak at 3 schools now it appears to be only 2. Part of my speech, minus the fact includes, fact that I do smoke and how it would be so much easier to never start than to quit. And how i started smoking when I was 13. It also goes into dollars, if I had saved every dollar I spent on smoking how much money I would have, if i just saved it under my bed. It also includes how much money I would have if invested (scary its almost $60K) I then put on the bracelet give them my email address and ask them to check in on how I am doing. Asking them to help support me as well as others that smoke. (it may only be two schools now, but I want to video tape it).

If anyone would like a bracelet please email me. We are going to sell some to help cover the costs at $2.50 each including postage, Our goal as a foundation is to have .99 cents of every dollar raised go to support those living with or facing (needing tests) lung cancer.

I wish someone would have done it when i was 13, we had the D.A.R.E program and i am drug free, but smoking was how you got into the "in crowd".

I know promising 700+ kids will help as I am a man of my word.

God Bless and thanks for the support.
Dan Hart

By Bette_Tx
Posted October 29, 2008 at 10:00 am
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Susan wrote:
" I wonder if it's such a bad idea to approach the tobacco companies to fund research for lung cancer?"

Susan, I read that the study that came out saying there should be regular screening for lung cancer (the CTScan) was funded by the tobacco company. However many doctors were against this idea because they said it would cause unnecessary risks and dangers to people who didn't need the biopsy, surgery, etc. I don't agree with that because patients' health condition are checked out thoroughly as to whether they can tolerate the biopsy or surgery .. or at least my surgeon did.

Then when he told me I 'passed the test' and was a candidate for surgery, he gave me a long list of things that could go wrong.

So basically it was up to me as to whether I had the surgery. I chose for the biopsy and if it showed cancerous cells, then I wanted the lobectomy while I was still under anesthesia.

I believe the CTscan should be made regular screening for lung cancer just like the mammogram is for breast cancer.

Bette

By MarciaGreer
Posted October 29, 2008 at 10:14 am
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Kathy brought up a really good point that I havn't seen discussed much at this site. Our government has for decades funded tobacco farmers and they still have strong lobbying arms in Congress. How about aiming some of this anger and blame at our own government for encouraging smoking, and then on the other hand not adequately funding research into treatments? Could it be that by increasing funding they would be admitting that tobacco is bad, increasing public pressure to end the power of the tobacco lobby? We are all victims, whether of the disease or our government's collusion with the tobacco lobby.

By peyz33
Posted October 29, 2008 at 10:39 am
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Dan - try the patch - I was wearing it when I got my dx....at least I was trying. But the dx of Stage 2 LC - I quit cold turkey that minute....

By peyz33
Posted October 29, 2008 at 10:40 am
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Hey Susan - I jeard that they won't accept funds from tobacco companies - I think they should - and hey - I work around the corner from Phillip Morris - you guys just say the word and I'm there!

By rea1024
Posted October 29, 2008 at 2:38 pm
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great post I will copy and paste it to all in my address book. It is time lung cancer gets the same attention some of the other cancers do.Almost everytime I go into the grocery store someone is asking, will you donate a dollar to this or that type cancer, I always say , no thank you, I spend all my money on my husbands battle with cancer . I feel bad for all cancer patients , no matter which type but lung cancer is always negleted as most people believe you brought it on yourself.

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