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bart ziggie ( Greg )

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Hello everyone. I have put off posting this for the last couple days hoping something would change and i wouldnt need to. However, it hasnt and i need some insight. As we all know this is lung cancer awareness month. This is my first one. Since i have been back to this board in the last 6 weeks or so i have resigned myself to do everything i can to further peoples knowledge and understanding of this disease. This includes many people i have met in other places such as other chat programs etc... as well as family,friends,and newly diagnosed patients. Ten days ago i came up with a generic letter that was simple and to the point. I wanted to let my local media here know that this was lung cancer awareness month. We have 4 major television outlets here in the St. Louis area. We also have a large newspaper. With several small town newspapers including a fairly large circulation one in the suburb that i live in. Well i emailed my letter to all of the tv stations Healthbeat reporters. I also emailed it to the 2 newspapers. I didnt recieve a response aknowledging that they recieved these or that they already had things planned. So i emailed the same letter again with a little twist, re-emphasizing the importance of this issue. Still no responses. I have all of these stations saved on my favorites on my pc and check them daily for their health stories. I am getting madder by the day. When i see segments on Botox injections,firm matresses,youth male testosterone, and even something on a man " catching on fire during surgery " this really pisses me off. Pardon my language ! I feel helpless here. I am ashamed at my hometown. I have made some other calls to try to get some things accomplished but nothing yet. I have also talked to my Dr. about this and am scheduled to see him today and i will again see if he can help. I do not want any accolades here dont want my name mentioned,or to have my picture taken or write an article i just want to see lung cancer info out there for others to look at. I did have an appt. last week with my Pulmonologist and she flattered me by asking if i would be interested in doing an interview with her accociating the dangers and risks of smoking and its consequences. She is very well respected in our community and i told her i would be honored. I dont think my name or adress is even important here just the message. This will be an audio interview that will also be dictated to text. She said she feels given my personality and my age i may be able to make an impact on her intended audience which is college kids. I also related to her the problem i was having with the local media and she said she may be able to help. I will again ask her for the help. I am sorry if this is long and windy but it really bothers me alot. Is there anyone else who has faced this ? What if anything can we do ? Time this month keeps ticking by. This issue is actually causing me anxiety and i shouldnt let it get that far. So if there are any suggestions i am all ears.


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I am just starting to go down the same road that you are with the media, so I thought we could share ideas. My mother passed away last week from SCLC, so now I'm refocusing my energy from her to getting the word out on lung cancer.

Since ALCASE did not list Wisconsin as a state that recognized Lung Cancer Awareness Month, we wrote our governor. He signed the proclamation and sent copies to my family. However, that isn't even half the battle since no one knows about it. The trick now is getting the word out through the media.

My thought is to take the opposite approach that you did. Reporters, newspapers, TV, etc are looking for "stories." I think if you personalize it, show how it affects a person, a family, a community, someone may grab on to it and do a story. Even if you know of a local "celebrity" that has dealt with lung cancer in some form or fashion.

Plus, I plan on focusing on the fact that our governor signed the proclamation recently.

I'm hoping to get the word out here as well, so I'm interested to hear any thoughts, others that have been successful etc.

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YES Greg,

Have run into the same thing, :x:x , It's very frustrating at times but please don't give up. As survivors we have to just keep on pushing, writing and telling our story. The message is starting to get out there, but way too slow.

hang in, and keep doing what your doing

God bless

Bobmc- NSCLC- stageIIB- left pneumonectomy- 5/2/01

" absolutely insist on enjoying life today!"

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I wish to address both Greg and EDP: I will address EDP first on the Wisconsin issue.

I am a patient of Dr. Joan Schiller, at the University of Wisconsin Comprehensive Cancer Center. Dr. Schiller co-authored the book "100 Qestions and Answers About Lung Cancer". She is also quite active with ALCASE and is known worldwide for work in Lung Cancer. On November 4, Dr. Schiller appeared on the Early Show on Channel 3, WISC-TV, Madison, WI. She was also presented in an infomercial carried on Channel 3, concerning lung cancer. Go to

http://www.channel3000.com, click on the Health tab, then click on Health Watch on the left and you can read Dr. Schiller's statement concerning lung cancer.

Last year Channel 3, WISC-TV, Madison, WI did a story on the Lung Cancer Support and Advocacy Group at the University of Wisconsin Comprehensive Cancer Center. (EDP, I will send you a private message concerning that group at the meeting schedule.) This year, Channel 3 ran a series on smoking cessation.

Carleen Wild, who is the Co-anchor for Channel 3 News, was instrumental in the organization of the Lung Cancer Support Group, mentioned previously. She has a vested interest in the group, as her mother died of Lung Cancer.

Madison Magazine, Madison Wisconsin, devoted 2 articles and an editorial, to lung cancer in this month's issue. Those articles and editorial can be read at: http://www.madisonmagazine.com . Scroll about half way down to locate the links to the articles, and click on the picture of Brian Howell, at the bottom of the page, to read his editorial.

This next Tuesday and Wednesday, November 18 and 19, myself and others from the Lung Cancer Support Group will be manning a table in the lobby of the University of Wisconsin Hospital. The table will be active from 9:00 AM to 3:00 PM both days.

Now to address Greg. Diligance is the key. Getting all the things, above, to happen in Madison, Wisconsin has taken about two years worth of work. Carleen Wild, of Channel 3 News opened many doors for us to get the type of coverage and pubicity. The Baraboo News Republic, Baraboo, WI, where I live, has done no less than 3 stories on me. To get the first interview, I went to the newspaper office and asked to speak with a reporter. 5 minutes of talking to her, she asked if I would like to sit down and ended up getting a 45 minute interview, which they published.

You have done good by sending emails, but you need to follow-up. The next step should be a telephone to insure they received your emails and ask them if they have any questions. Reference the ALCASE web site, American Cancer Society web site, and the National Cancer Institute web site. Give them the information and tell them they are able to view that same information at those web sites. That will then qualify yourself.

Remember this, none of us ever wanted to be in this position. I would gladly give up this publicity for a set of healthy lungs and a healthy liver. I would much rather be working then collecting Social Security Disability, but as long as I able to, I will find a way to get the word out about the plight of lung cancer patients. Guaranteed, just getting the opportunity to talk to some of these people has been very frustrating. Use newspaper articles, TV presentations, web sites to your advantage. Ask these media people if they took the time to read those articles or if they saw that TV presentation. The biggest thing, don't give up. Talk to ALCASE and ask them to send information to these various media outlets. Get yourself known at the local chapter of the American Cancer Society. Talk with your oncologist. Locate the social worker at the cancer center you are going to. Talk to the public affairs people for the cancer center, ask them about working with you to put together a media release on lung cancer.

I hope these suggestions help, as they have been successful for our lung cancer support group. Myself and others in our group have been instrumental with getting the types of pubicity I have described.

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Hi Greg,

I too have written to my local (Boston) area newspapers and TV stations addressing lung cancer. Only one TV station e-mailed me back and she said she would pass my e-mail along but she could not promise anything would be done. It was not up to her. Her father died of cancer. Sadly I have never heard back again. I did send a proclamation to my governor, which he signed and sent back to me. I don’t how much weight that has. Every time I talk to someone and explain all the facts about lung cancer they are surprised. I have to admit when I was first diagnosed I was surprised myself and did not realize the scope of lung cancer when I did my research on it. That’s why it is called the silent killer. When I go for my chemo treatments they made it very obvious about breast cancer (last month) everywhere you went in the building. This month when I have gone there is nothing about lung cancer. As a matter of fact a local politician and a local radio station talk show host have a rare form of cancer that affects very few people in the US and they had it all over the media. Not saying they should not. But it makes you wonder. Go figure. Not sure what the answer is. Maybe someone out there will know. Take care and God Bless.


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I think everyone who has tried has come up with similar apathy on the part of the media. Last night I did see a "lung cancer story" on the local news, but I was highly disappointed to hear that the story was just about the fact that Texas is spending way less than recommended on smoking prevention and cessation programs. I am all for anything that stops people from smoking, but that's not lung cancer!! I sent e-mails to my local papers and tv outlets, and I got zero response. When I talk to people about lung cancer, they are interested and shocked to learn that it could happen to someone who hasn't been smoking for 30 years and all the other facts I can give them, but I can't seem to get that information out of my immediate surroundings.

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First of all, thanks to everyone for some excellent feedback concerning this post. Everyone that replied had some good input in some way. I am going to make them calls Mon. Dave as you talked about. I will not give up. EDP you could very well be right with that angle as well. Whatever becomes of this issue this month i have learned alot. Being a newbie at this i didnt really have any idea how much lung cancer is shunned and swept under the carpet so to speak. It really blows my mind to say the least. I too seen alot of public service announcements and press releases last month on breast cancer. Hopefully with more effort we will soon break the silence of this disease and get the awareness message out loud and clear. It is obvious to me that prevention is a huge key here. I know that smoking does contribute to a large # of lung cancer cases and i have seen and read where more young people like me are being diagnosed more frequently now with small cell in particular which is almost always related to smoking. I drive by the local high school and see these kids lighting up everyday. If the lung cancer message and a face to go with it can affect even one of these kids and make them kick the habit then it is worth all the effort in the world. Again folks thanks for the great input !



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There's an Oregon state rep. who has been very public about this lung ca diagnosis and treatment. I wrote him - here's the text:

Dear Senator Westlund,

As you may know, November is Lung Cancer Awareness Month. The theme of this year's campaign is "No One Deserves Lung Cancer," emphasizing that although 80-90% of lung cancers are caused by smoking, only about 15% of smokers get lung cancer. Moreover, there are many other lifetsyle-related diseases that do not suffer from the stigma associated with lung cancer. This must change if we are to provide compassionate and effective treatment for this devastating disease.

A few fast facts about lung cancer:

* Lung cancer is the most common cause of cancer death in both men and women in the United States and the world.

* Approximately 50% of patients have distant metastasis at the time of diagnosis, and another 25% have regional metastasis.

* In 2003, the American Cancer Society estimates 171,900 new cases of lung or bronchus cancer and 157,200 deaths in the United States will occur. The high death to incidence ratio (approximately .91 in 2003) associated with lung cancer is reflective of the late diagnosis and resulting poor survival associated with the disease.

* Lung cancer patients experience life-altering chronic symptoms that tend to increase in severity over time. Scientific evidence shows that symptoms are worse in patients with lung cancer when compared to patients with other cancers.

Lung cancer receives nowhere near the research dollars that breast and prostate cancer receive, even though more people die of lung cancer and it costs our health care system more to care for lung cancer patients. I'm asking you to use your personal experience and your public visibility to see to it that Oregon joins the many other states who have improved lung cancer awareness, directed money toward smoking prevention and cessation programs, and promoted expeditious diagnosis and treatment for people with lung cancer. On a national level, we must direct more research dollars toward finding better symptom relief measures, improved screening methods, and more effective treatments for this terrible disease.

Thank you in advance for your support of this critical issue.


Teresa Tarnowski Goodell, RN, CNS, CCRN, CS

Clinical Nurse Specialist

Doctoral Candidate, OHSU

Beaverton, Oregon, USA

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Hello everbody. I have an update im pretty excited about. I just checked my e mail and foung this. From :

"Dan Brannan"

To :


Subject :


Date :

Tue, 18 Nov 2003 11:50:50 -0600

Reply Reply All Forward Delete Put in Folder...InboxSent MessagesDraftsTrash Canold emails etc.... Printer Friendly Version


Can you give me a call at 463-2560? I want to talk to you about a doing a piece on lung cancer awareness.

Best regards,

Dan Brannan

This is great. This guy is the editor of our local newspaper here. Heres a chance for me to try to finally give back a little of the info and knowledge which has been given to me. I am a little nervous im not a very good interviewee, i dont think. lol..... I would like to go there with the hopes of telling my story instead of just quoting statistics. I am hoping they will use their rescources to get all that info. I really want to do the best i can here and take advantage of this opportunity. Guys if you have any last minute feedback,suggestions,etc.... it would be greatly appreciated.Dave G. Bob, Katie, Dona, Any suggestions for me ? Im a little nervous about this i dont want to screw it up somehow. I am probably going to try to meet with him tommorrow afternoon so hopefully someone will have some helpful feedback for me by then. Thanks guys !


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Definitely tell him your story and experiences with lung cancer. Let him know the struggle you have gone through and the stigma you may have faced with family or friends, when you told them about your lung cancer. You don't necessarily need to quote statistics, but reference web sites, such as http://www.alcase.org http://www.cancer.gov and


When I have been interviewed, I stressed the fact that LC has the highest death rate of all the cancers, but is the least funded. I also stress that is the biggest cause of death in women today, more then double that of breast cancer. Also the number of men dying from lung cancer is close to double that of prostate cancer. Also, it is not a disease reserved strictly for smokers, as many believe. As each year goes by the median age of lung cancer patients is dropping. Younger people are getting lung cancer, especially those who have never smoked. Use yourself as an example for the age of lung cancer patients.

You will probably find that you will do surprisingly well. Most reporters have a way of making you relax and it probably won't be questions and answers, but more like a conversation between the two of you. Let us know how it goes.

As a PS, the Lung Cancer Support Group, U of Wisc Comprehensive Cancer Center has a table set-up at the U of Wisc Hospital and Clinics today and tomorrow. Today, went very well, with many people stopping to ask questions. Many of the hospital staff stopped by to pick up ribbons. ALCASE's Spirit and Breath also was very popular. Dr. Joan Schiller stopped by and had her nurse bring a box of her book "100 Questions and Answers About Lung Cancer" for us to hand out. I am looking forward to tomorrow to see if we do as well. Tomorrow is lung cancer clinic day, so hopefully we will reach more people with lung cancer to let them know about our group. I have also been plugging this web site and message board. I will post another update tomorrow.

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Thanks for all the new input and suggestions everyone. I just got off the telephone with them and they will be here tomm. at 2:00 my time. ( CENTRAL ) Sure Katie i will get the article and post it. I will ask them tomm. when it will run. Its not a very large newspaper but a few things do occur to me. I may be able to make contact with alot of local people with lung cancer. I am going to have them include my E- Mail address at the end of the interview. I have got some new issues that have popped up in the last several days concerning my condition. I am going to briefly post in SCLC forum about it.



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Go for it, Greg! I'm confident your story will be compelling to the reporter. Remember - no one is better qualified to tell it than you! Your passion on this issue comes through, even via this bulletin board. That goes a long way in an interview. Can't wait to hear how it went. - Teresa

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Thank so much for everyones feedback and positive input. I did the interview this afternoon. It was very simple. I just hope it is edited that way as well. The reporter said it will be in tommorrows paper. I will pass it on if it is. I also gave a huge plug for this board. Quite simply i dont know where i would be without it. Collectively as a group i know of no other group that is like this. Very seldom if ever do i read a post or reply and not feel the emotion in it. I also must stand corrected from my original post. I stated that i was embarressed by my "hometown newspaper" Ill take that back.... lol. Thanks for doing the story guys. Maybe next year we can get our ducks in a row and run a week long piece to address more of the issues. It is impossible to address this disease and its consequences in anything less. Well at any rate thanks to everyone. Good luck on the media etc....


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