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 USMCCAT
Posted October 29, 2008 at 4:51 pm
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Hi, Susan..I agree with you. While, I do not like people to smoke around me or my children, I do know how hard it was for my father to quit after so many years. It literally took sleep apnea and a week on a respirator. (His blood ox level was 29%!) The Drs at the VA were surprised to see him walking. That was in 1992, 12 yrs before his fatal diagnosis in 2004. It's just plain tough. I am overweight by about 50 lbs. I have been wanred about possible diabetes, borderline cholesterol levels, and a family history of heart attacks...you DID see me eating a brownie today, right?? It's hard to kick bad habits.

By kosby
Posted October 29, 2008 at 4:54 pm
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The tobacco compaies know exactly what they have done over the years. Look at all the big TV news shows - 20/20, 60 Minutes, and who knows what other ones - but how often do you hear Paul Newman died of Lung Cancer? Not even on 60 Minutes - they didn't even want it known that Peter Jennings died of Lung Cancer.

Tobacco companies and people know how detrimental smokes are - look at the multi-billion $$$$ settlements that have been made - the $$$$ should have been directed into ALL research and not families.

I am doing OK with the patch right now but who knows - I may light up later tonight and it's been 30 days. It's just a tough one and for those of us at stage IV quitting will only help us breath easier and not cough so much - but our damage is done - young people need to be educated not to smke so if they are 1 of the 20 or so % that never smoked and still get lung cancer, they may not be scorned upon quite so harshly as some of us have.

Kathy

Kathy

By Diamante
Posted October 29, 2008 at 6:16 pm
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Hi Susan:
Haow are u? I can see you in great shape, I feel great after reading all that clear information, my Dr. said I am in stage IV and I have tumors in both lungs, it is not spread to other sides.
If I smoked I used to enjoy it, I am sure any body desreve this sicknes, thank you for you information.
Congratulations for you e-mail I am going to send to my sons, thank tou very much
Regapi

By stephanie410
Posted October 29, 2008 at 11:34 pm
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Susan, you crack me up! Only you could have a post on the "top ten list" for almost 5 months and have 103 replies!

At any rate, I love your thought of pressing the issue of tobacco companies having to fund research. It looks like it might be complicated, though....

If I have it right, states can individually impose cigarette taxes on the consumer...it looks like PA's runs about $1.50 per pack. I don't know how other states do it. The PA website says..."The revenue generated from the state’s Cigarette Tax goes to the Children’s Health Insurance Program (CHIP) to provide health insurance to children of low-income families, the state’s Agricultural Conservation Easement Purchase Fund used to preserve farmland and to the Health Care Provider Retention Fund for malpractice insurance." So, we are helping farmers with the tobacco settlement money, not the people those companies are killing.... AAAAAAAAHHHHHHH!

Then there is also the Master Settlement Agreement (MSA). "On November 23, 1998, the National Association of Attorney Generals (NAAG), representing 46 states including Pennsylvania, entered into a settlement agreement with major tobacco product manufacturers that calls for yearly payments to the 46 states. Pennsylvania uses its MSA payments for health initiatives benefiting all Pennsylvanians." (read between the lines...not lung cancer).

I think it would be great to hit this angle. I'm not sure if it's better to hit state by state for reallocation of the current funding coming in or press a wider federal effort for a federal cigarette tax with that purpose. It would be a mighty accomplishment. Would be glad to help.

--Stephanie

By SusanL1
Posted October 30, 2008 at 8:54 am
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Stephanie. I was very surprised to see this resurface - especially since the other post is deleted and I know people are curious about what it said (and it was so long ago, I don't remember).
I think we should check into why tobacco money isn't going into lung cancer research. I know so many companies are resistant to taking money from big tobacco, but why? They are a legal business and if it helps, it helps.
Do you want to start the ball rolling to see what we can do and how we can get some of that money from either the taxes or big tobacco themselves?
I leave for Baltimore today to get screen for a clinical trial and then I'll be living in Baltimore for 10 days undergoing treatment.
Other than the trial, I wouldn't even know where to begin, but you sound like you may already have the knowledge and drive to lead this effort. What do you think?
Susan

By SusanL1
Posted October 30, 2008 at 8:59 am
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Sorry Chemo Boy - that woman deleted it after it started world war II. It was very mean but she was devastated that her son could have lung cancer (at that time I think they didn't know if it was lung cancer or not, but not sure). It would've made you mad.

She had the right to say what she wanted to say, just NOT on a lung cancer survivor discussion board!

Susan

By stephanie410
Posted October 30, 2008 at 10:18 am
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I hope your treatment goes well! You'll be in my prayers. Put all your concentration there, but keep us posted!

Things are a bit crazy into next week, and then I'll be out of town for a week (a crazy trip with two grad school girlfriends to a ranch in Arizona!!--when you're the sick one, you get to pick the trip!). Maybe we can hook up when I'm back and you're feeling up to it, and maybe we could get some others to weigh in. I don't know where to start...

Actually, I have no knowledge other than googling the topic for PA before I responded to your post...but I'm glad to help. This is a pretty involved issue, though. I'm wondering if we can "lobby" one of the big lung cancer organizations to take this on as an issue (with our help, of course!). LCA...any feedback?

Take good care!

--Steph

By cosmogal_7
Posted November 6, 2008 at 7:44 am
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I can't believe anyone would say that! So sad. I would be so mad at anyone saying my mom deserved this. Yes she smoked, yes she knew the risks, but in no means does she deserve it. I have never smoked and my mom lives with feeling guilty not only because she already feels like she did it to herself but because she feels she has put us kids at risk when we were young.
I have done alot of research on lung cancer since my moms diagnosis. It is true that most cases of lung cancer are related to smoking, 85% in fact are. Only a small fraction is related to non smokers. However I think it is the one cancer that has the least attention and needs the most. It is the leading cause of death in women over breast cancer yet where is all the information on that? I feel because it is an attack of sorts on smokers to quit that the one crowd that we need to get the word out doesn't really want to listen. I know for years I tried to get my mom to quit but she wouldn't but not for lack of trying. There was always a reason not to such as can't take the medicine, I am under stress, the patches irritate me or the gum doesn't work. No one deserves this cancer. I hurt everyday worrying about my mom. Families don't deserve this cancer. I think we sure do need more and more info put out on this. Where are our ribbons? Where are all the products in stores supporting lung cancer awareness? Thats my question!

By babbys-kid
Posted November 6, 2008 at 3:15 pm
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Hi Susan, I just read your post (the first one). My father was diagnosed a couple of months ago with NSCLC. As if that wasn't enough, he just underwent open heart, triple bypass surgery .My mother, my two brothers and I have been incredibly supportive of him. I wish I could say the same for the rest of our family.

My dad's twin and his sister ride him all the time about how he is devastating the family and how he brought this on himself. When dad is not well enough to get out of bed, my aunt and uncle start in on my mom and how she let my dad live this way for so long.
Unfortunately, I didn't have to read that nasty post. We get that kind of negativity from our own family members. I know they are grieving in their own way, and (I know it doesn't sound like it) they truly are wonderful people. I'm sure they don't understand how this is hurting us. People just don't get it sometimes. They will have a difficult time finding peace in the future. May God bless you on your journey.
Laura

By SusanL1
Posted November 6, 2008 at 6:16 pm
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Hi Laura;

It's so sad, isn't it. There is another post I wrote (I Need To Vent) about a guy who wanted me to be on a TV show about lung cancer until he found out I was a former smoker. You might find that post interesting.

As far as I am concerned, until we get rid of the stigma, we will not get anywhere. I know some never-smokers have said that for the greater good, we should just talk about that, but I truly think that they won't be helped either until this stigma is gone, because people would say "they must have been around second-hand smoke" or something like that. The stigma just needs to be addressed and erased, and that is what I will be spending my time doing!

I'm sorry that you and your family have to go through that. It is so insane that people can't just support without judging. What gives anyone the right to judge?? (I better quit now or I'll go on and on about this).

Good luck and we are here to support you and your family any time you need us.
Susan

By babbys-kid
Posted November 6, 2008 at 10:12 pm
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Susan, thanks for your response. I'm going to look for your other post. I forgot to mention how the doctor decided to tell my mom about dad's cancer. She sat across from mom with her arms folded and nastily asked "don't tell me, he's a smoker right?" After it was decided that dad would have a partial lobectomy, he went in for a stress test to determine if his heart could handle the surgery and that's when the cardiologist found 90% blockage (which resulted in the bypass), he asked my mom "What did he do, just sit around all day and smoke?" Nice, caring doctors, huh?

Anyway, I am making it my mission to give lung cancer the attention it should command. I email the newspapers daily as well as state senators with personal stories (mother-in-law just diagnosed stg 4 right after dad) and info from this website. I will continue until I get some responses!

This sight has given me such comfort and hope and I thank you for sharing your personal journey with me.

By SusanL1
Posted November 7, 2008 at 8:35 am
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Babbys-Kid,
How sad that the doctors can't even be compassionate. Someone posted a link to a newshow where there was an oncologist (former smoker) who discussed where oncologists need to be more compassionate to lung cancer patients. I guess you dad's onc never saw that piece.
I have some flyers you can download on www.helplungcancer.com that you can also use as a tool to bring awareness. (There are also resources on this website for different links to go for information). For the flyers, there is a standard one that asks people to write their sentators and gives facts about lc, and another one that says "November is Lung Cancer Awareness Month" and has the facts without the senator part. It also says at the bottom "it doesn't matter if you never smoked, are a former smoker, or currently smoke - NO ONE DESERVES CANCER. I've found this flyer to be somewhat effective.
Good luck. You've also found the best discussion board for support.
Susan

By babbys-kid
Posted November 7, 2008 at 10:21 am
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Susan, thank you for the info. I have been hounding my local newspaper here in Fl (which happens to be the most widely read in the state and top 10 in country) which employed dad for decades. I will continue this fight to bring awareness, as a 36 yr old stay-at-home mom, I have the time! I have been scanning this sight for ideas and have found quite a few. Thanks again :)

Laura

By prathergirl
Posted April 29, 2009 at 2:44 am
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Please read our profile in regards to the " smokers deserve it. " At the height of my anger I contacted an attorney to request information about the " failure to diagnose in medical malapractice. " He told me that even if there was outright documentation my husband didn't get the standard medical care, quote; " juries have no sympathy for smokers. " When my husband finally heard the word " cancer " he quit smoking as he would have two years ago if not told he positively didn't have cancer after no needle biopsy was done on a left lobe mass back then.

By Marie400
Posted April 29, 2009 at 7:24 am
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Prathergirl - please be aware that Susan has passed away since her original post. I don't remember the exact date, but it was about 8 weeks ago.

By Von
Posted April 29, 2009 at 2:46 pm
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Susan, One thing I have learned from life is their are alot of ignorant people in this world. We have our own things to worry about without wasting our energy on them. I too am 50 with nsclc but mine was operable. Yeah, I smoked 20 yrs. ago, my dad smoked too, and does not have any form of cancer. I will say a prayer for ignorant people, BUT MANY FOR ALL OF US!!!!! Wishing you the best , take care.....Von

By Granny888
Posted April 29, 2009 at 3:14 pm
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We all know smokers don't deserve cancer any more than non-smokers. I don't think that's the issue. While I abhor the insensitivity of people who ask the question "well, did you smoke?" I don't think you can lump those of us who say we have cancer and we never smoked into the same boat.

We have had it drilled into our heads for eons that smoking causes cancer. Asbestos causes cancer. Certain environmental factors cause cancer. Here we are, at 30, 40, 50, 60 -- part of the new younger crowd of mostly women who never smoked turning up with lung cancer and we're stunned.

Yes, everyone who is diagnosed is similarly stunned, but while the smoker may be left with groping for acceptance and needing to find out how to survive, at least they have some inkling on "where did it come from?" We're left with not just "why me?" but "why?" at all. We need to make sense out of it. I'm sorry, but smoking makes sense -- it doesn't make it all right, in no way is it all right, but it does establish a bona fide contributing factor. And once we find that radon in the house, or other bona fide cause or likely contributing factor we can be mad as you know what but there's a certain resolution that comes with knowing why.

As time goes on of course we find out more and more and become less inclined to identify ourselves as living with lung cancer and never having smoked. It's not just lung cancer -- someone has cancer you wonder two things 1) what kind and 2) where did it come from. After coming clean after surgery for 1b lung cancer my mom developed PRIMARY liver cancer. There's an issue with liver cancer too, guess what? Oh your mom never struck me as a drinker .... where did it come from? And actually she did drink often (just not often to the point of being drunk) but they were just starting to find out that liver cancer has been coming up in women who have been on long-term hrt.

It's not a matter of blame, it's human nature to want to know -- WHERE DID THIS COME FROM. Yes, it's also human nature to want to place blame but I honestly don't think most of the people who ask that question aren't asking it to be mean or insensitive.

By DONOTGIVEUP
Posted May 2, 2009 at 11:52 am
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I think we should ask the question, "Does smoking prevent lung cancer ?" Of course there would still be lung cancer if no one ever smoked. There are so many other things that "help" cause lung cancer, such as pollution exhaust fumes on our highways and in our cities, hormone sprays used by the farming community in particular, industrial gas emmissions. Let's not make excuses for ourselves and others, and remember, ---- The cancer industry is one of the largest industries in western society, and western society is spreading eastwards as well ! Can you imagine how many people would be out of work if a cancer cure was found ?
Those of us that do adopt a healthier lifestyle by eating less "junk food" , stop smoking, exercise regularly, do have a far better chance of keeping health issues at bay than those that ignore these preventative measures. Yes, some of us have a higher pre-disposition to cancer in our genes, than others and it is more important than ever for us to take preventative measures and I for one enjoy these preventative measures, like taking recommended health supplements and exercising regularly in my daily life style.
I have stem cells in storage waiting for my return. It is good to know that they are there, but I feel very confident that I can hold my remission status by continueing to do what I am doing. iona4life@hotmail.com ------- Walter

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