This important legislation authorizes a five-year program to reduce the mortality rate of lung cancer, which continues to be the number one cancer killer.

Even though mesothelioma is not technically classified as “lung cancer” because it affects the lining of the chest and lungs, and can also affect the lining of the abdomen and the heart, I am excited to see real progress being made in this area. Funding for research and treatment of lung cancer can only benefit victims of mesothelioma – pleural in particular, affecting the lungs – as well as other asbestos-related diseases that affect the lungs, such as abestosis, a severe scarring of the lungs.

The bill will require the Secretaries of Health and Human Services, Defense and Veterans Affairs to combine forces on a comprehensive, coordinated plan of action with funding authorized for five years to accomplish mortality reduction goals.

Of particular interest is a requirement in the bill directing the Secretaries of Department of Defense (DoD) and Veterans’ Affairs (VA) to implement an early detection and disease management program for military personnel who are at high risk of lung cancer because of exposure to carcinogens during active duty. As the mesothelioma community knows, many veterans, particularly those who served in the U.S. Navy, now suffer from mesothelioma as a result of the widespread use of asbestos on Navy vessels for years.

According to the LCA, the bill includes specific authorizations of $75,000,000 for certain National Institutes of Health (NIH) agencies in FY10 and authorizes such additional sums as may be necessary for all the cited agencies to accomplish the goal for FY2010 through FY2014.

Read more at the LCA web site.

SOURCE: myMeso › Lung cancer awareness takes big step forward

John’s story touched a lot of people, and did so much to help raise awareness about lung cancer, which is the leading cancer killer. His strength and determination to fight this disease, and his evident love for his family, his friends, and life itself, touched so many people.

While mesothelioma is not usually considered traditional “lung cancer,” as it most often affects the lining of the lungs but can also affect the lining of the stomach or, more rarely, the heart, we still rally around the lung cancer community in its call for more research, more funding and more awareness. Today, we join the Lung Cancer Alliance in remembering this remarkable man who, as he fought his own personal battle, also dedicated himself to fighting the stigma of lung cancer, and fighting for a cure.

This morning Matt Lauer presented a tribute to John Atkinson on The Today Show. Take a moment to watch this short video tribute to a remarkable man. Thoughts and prayers go out to his family and friends.

SOURCE: myMeso › Remembering John Atkinson

Although Coady didn’t suffer from mesothelioma, he was very much aware of the risks posed by asbestos. His work during his time in the Navy very often put him in contact with the substance, he said, and seven of his friends died from mesothelioma since his retirement. In addition, for 10 years following his retirement, Coady worked as president of the Navy Mutual Aid Association, a non-profit veterans benefit group and life insurance service, where he said he saw what he thought was a disproportionate amount of lung cancer deaths.

When he began investigating lung cancer research efforts, Adm. Coady was shocked at the relatively few dollars spent by the Veterans Administration and the U.S. Department of Defense, considering the number of veterans affected by the disease. He also was disappointed at the overall lack of funding for lung cancer research in comparison to spending on other cancers, especially since lung cancer is the leading cancer killer.

He dedicated himself as Chairman of the Board for the Lung Cancer Alliance, fighting the battle for lung cancer awareness and funding under the organization’s motto “No More Excuses. No More Lung Cancer.” He led efforts in lobbying Congress to make lung cancer a national health priority.

Just last week, Coady saw some of the first fruits of his efforts, when Senators Dianne Feinstein (D-CA) and Chuck Hagel (R-NE) introduced legislation in the U.S. Senate creating and authorizing at least $75 million for lung cancer research. This is the first ever multi-agency, comprehensive program targeted at reducing lung cancer mortality.

Perhaps the best memoriam Adm. Coady could receive is for supporters of lung cancer awareness and research to contact their U.S. Senators NOW and ask them to add their support to S. 3187, the Lung Cancer Mortality Reduction Act. Remember him and take action for those to come after him! You can view his obituary here.

Blessings to Adm. Coady’s family at this time of loss.

SOURCE: myMeso › LCA Chairman Coady has died

Senators Feinstein and Hagel were instrumental in authoring a policy resolution in 2007 to designate lung cancer as a public health priority, which was passed unanimously. The resolution called for research, better treatments, and early detection, with a goal of reducing lung cancer mortality by 50 percent by 2015.

This new bill would establish that comprehensive program under law and authorize funding, according to a release from the Lung Cancer Alliance, which today issued a call to action for its support.

“We have seen great advancements in prostate and breast cancer survival rates and we must commit ourselves to making the same progress with lung cancer,” Sen. Hagel said, noting that lung cancer currently accounts for 28 percent of all cancer deaths in the United States.

Each year, lung cancer kills more people than breast, prostate, colon, kidney, melanoma and liver cancer, combined.

Senator Feinstein said, “It’s time for the federal government to step up its efforts and make fighting lung cancer a national priority.”

Contact your Senator TODAY!

SOURCE: myMeso › Senate introduces lung cancer legislation

I’ve posted about John several times on this site. He was selected by the readers of Golf Digest magazine to participate in this first-ever celebrity foursome event. Diagnosed with Stage IV lung cancer, John used the event as a chance to raise awareness about lung cancer and to inspire those with the diagnosis to keep meeting the challenges of everyday life, and taking advantage of life’s unique opportunities.

This morning, Matt Lauer interviewed John and his brother, Kevin, who caddied for his big brother on the last hole in an emotional show of support. Watch the video at MSNBC.com.

In addition to this video, the Lung Cancer Alliance has the first part of what will be a multi-part documentary about John’s battle against Lung Cancer up on its site. John is a spokesperson for the organization. Watch the first episode at the LCA web site.

John has made it his mission to raise awareness about lung cancer, with the hopes of increasing funding for research and treatment. His campaign gives hope to everyone who battles lung cancer in its many forms, including those fighting mesothelioma, which affects the lining of the lungs. Thank you, John, for your willingness to go that extra mile!

SOURCE: myMeso › Atkinson conquers U.S. Open course

He arrived in California yesterday for a practice round, and will tee off with the celebrities in front of 250 spectators, along with camera crews and journalists, tomorrow. His final round and his score will be televised on June 15 as part of the lead-in to the U.S. Open coverage. The special will feature clips from the 18 holes of golf. John vows to break 100 on the tough course, with a goal of shooting an 89.

You can still sign up to sponsor John as part of his U.S. Open adventure, with funds going to lung cancer research and awareness. He is encouraging people to agree to double their pledge if he makes his goal of breaking 100. Find a sponsor form at the Lung Cancer Alliance web site. GO JOHN!

SOURCE: myMeso › Quick update on Atkinson

Today there was a great article in the Detroit Free Press about Atkinson. The article states that Atkinson considers his “Achilles heel” in the competition to be the fact that he’s never played the tough Torrey Pines U.S. Open course, not that he has lung cancer. The avid golfer was on the links shortly after his diagnosis (he shot a 78) and walked the course after completing four rounds of chemotherapy. His goal for the celebrity tournament is to break 100.

You can also keep an eye out for Atkinson on NBC Nightly News tomorrow, June 5. He is scheduled to appear, barring any unexpected national events that bump him from the slot.

Atkinson will be teamed with celebrities Justin Timberlake, NBC Today Show anchor Matt Lauer, and Dallas Cowboy star Tony Romo in the tournment, which will be aired on NBC Sports at 2 p.m. ET June 15.

How wonderful that Atkinson has this chance in the spotlight to talk about lung cancer, and to promote efforts to increase funding for research and to raise awareness. He also is an official spokesman for the Lung Cancer Alliance.

SOURCE: myMeso › Atkinson in the news again

John Atkinson talks about U.S. Open plans with ESPN2.

Atkinson will play the tough Torrey Pines course in San Diego. While on the radio program, John shares the story of his diagnosis and battle with lung cancer, and his plans to break 100 in the tournament.

John is a spokesperson for the Lung Cancer Alliance. Visit their web site to download a sponsor form, and consider hosting a party on the day of the celebrity tournament. John is encouraging donors to vow to double their pledge if he breaks 100.

Let’s get behind this remarkable man, who has a unique opportunity to share the message of the importance of lung cancer research and funding. NBC Sports will broadcast the celebrity event from 2-3 p.m. ET.

SOURCE: myMeso › Atkinson talks to ESPN2 about U.S. Open

According to the U.S. Department of Veterans Affairs, there are currently 25 million living individuals who have served in the United States’ armed forces. It is believed that a great number of them were exposed to toxic asbestos-containing materials during military service.

Every ship and shipyard built by the Navy before the mid-70s was fitted with numerous asbestos-containing materials. These materials were extensively used in engine and boiler rooms and other areas below deck for fire safety purposes, as well as in other areas of the ship. In fact, virtually no portion of a naval ship was asbestos-free between the 1930s and mid-1970s.

Unfortunately, veterans have little recourse when diagnosed with mesothelioma they believe to be the result of asbestos exposure during their time of service. Because asbestos use was so widespread before the first bans in the 1970s, it is very difficult for veterans to prove that asbestos exposure occurred only in military service.

Veterans are not legally allowed to seek compensation for mesothelioma and other asbestos-related diseases from the U.S. government through the court system. Ailing veterans must file a claim against the asbestos manufacturer, and they also have the legal option to seek assistance through The U.S. Department of Veterans Affairs (VA).

The VA is a government-run benefit system that is responsible for administering benefit programs to veterans, their families, and survivors. It is an incredibly complex system that comprises the second-largest federal department, after the Department of Defense. A search of the organization’s web site turns up no information about asbestos or mesothelioma. However, there are some organizations, such as Veterans Assistance Network (www.va-claim-help.com), that can help veterans wade through the VA benefits system.

Lung cancer is usually an indolent cancer that takes years to develop, thus the burden of treatment is falling most heavily on the VA. Late stage lung cancer is twice as costly to treat as early stage.

In February the Lung Cancer Alliance (LCA) announced that for the second year in row a coalition of top veteran organizations is calling for a screening program for veterans at high risk of lung cancer, to be included in the Independent Budget for Fiscal Year 2009 (FY09). This highly regarded comprehensive alternative budget addresses the most urgent needs of veterans, and urges Congress and the Department of Veterans Affairs to initiate a $3 million pilot screening program for veterans at high risk.

The AMVETS, Disabled American Veterans, Paralyzed Veterans of America and the Veterans of Foreign wars are the four co-authors of this document. More than 50 organizations support the Independent Budget.

A research program carried out by the International Early Lung Cancer Action Program at 40 centers in 26 states and 6 foreign countries during the past 13 years indicates that CT screening can detect lung cancer at Stage 1 in 85 percent of cases, and those treated immediately had a 10-year survival rate of 92 percent. By partnering with these types of programs, the Veterans Administration could quickly implement a pilot screening program for veterans at high risk, with a broad geographic reach and significant cost savings.

Rear Admiral Philip J. Coady, USN, (Ret.), chairman of LCA’s Board of Directors said, “Lung cancer continues to kill more men and women every year than all the other major cancers – breast, prostate, and colon – combined, and our veterans are at even higher risk, especially those whose active duty service exposed them to Agent Orange, asbestos, spent nuclear fuels, propellant gases and other carcinogens.”

Admiral Coady, a 34-year Navy veteran who never smoked, was diagnosed with lung cancer three years ago.

“Because there are usually no specific symptoms, most people are diagnosed so late they die within a year,” he pointed out. “Yet advanced CT technology that can diagnose lung cancer at its earliest, most curable stage is available right now, and high-risk veterans not benefiting from this is wrong,” he said.

Sources: asbestos.com, VAWatchdog.org

SOURCE: myMeso › Complicated path for veterans with mesothelioma

John was diagnosed with stage IV lung cancer a little more than a year ago at age 38. He was selected from among 56,000 people who entered a contest sponsored by Golf Digest, the United States Golf Association and NBC Sports to play the U.S. Open Course as part of the celebrity team. You can read more of his inspiring story at Golf Digest online.

In addition to raising awareness, John and the Lung Cancer Alliance would like to use this event as an opportunity to raise funds for lung cancer research. They are encouraging people to make a donation or pledge to LCA in John’s honor. There’s even a great idea for a “game day” event, where lung cancer awareness supporters can collect pledges and host a pledge party with family and friends. John is urging donors to consider doubling their pledge amount if he breaks 100!

Visit the Lung Cancer Alliance U.S. Open pledge page for donation information, pledge party forms, and links for help and more information.

What a GREAT opportunity to raise the profile of lung cancer awareness, and communicate to America – and beyond – what an important issue this is for national health! Watch for John in the coming weeks, as he is scheduled to appear on national news programs like NBC Nightly News, The Today Show and The Tonight Show. I’ll try to update when his appearances are scheduled.

SOURCE: myMeso › Lung cancer advocate Atkinson U.S. Open pledge

My Dad, Bill [Hackett], was a master mechanic and boilermaker from the time he was 25 until he retired on disability at age 61. During this time he dismantled and rebuilt or built boilers to run some of the company’s largest factories and businesses. He started out at Maryland Ship Building and Dry Dock and then went on to become an independent contractor.

Over the years he was exposed to asbestos hundreds of times, not knowing back then that it would be what eventually claimed his life.

From the time he was retired due to this disability until his death in 2004, he suffered tremendously with breathing disorders from mesothelioma. He faced several surgeries and had to have fluid removed from his body numerous times. There were days he could hardly breathe at all, but he kept going. How I will never know.

Because he had been self employed, there was no insurance because he could not afford it. And social security did not pay very much on a monthly basis. Being a decorated WW II veteran, he was entitled to some treatment through the Veterans Administration.

My father was a very independent man and refused to give up or give in to anything that stopped him from doing what he wanted and going where he wanted. And he refused to be a burden on any one, especially his daughters. Until the week he died he continued to serve as Chaplain of the American Legion Post and made arrangements for former veterans’ funerals and assisted their families.

But he never told us about the cancer. He went to all of his chemo appointments and never told us anything. It wasn’t until after his death and the Death Certificate was issued did we know this is what took him. He died alone, 2 weeks before Christmas, in the house where we grew up.

My dad was truly a great man. I believe the reason he never told any of us was because we lost our Mom to cancer when she was 34 and he was 36 and he didn’t want us to have to face losing him to cancer, even though it was a different kind.

Almost 2 years after his death, I found out that I have stage IV lung cancer.

Cancer in any form is life threatening. The more people are aware of the signs and symptoms of cancer, the better off they will be. Annual checkups are vital. Don’t wait until it’s too late. Cancer caught early can be cured. The later the stage, the more intense the treatments and the less chance for remission.

I’d just like to thank Nancy for sharing her Dad’s personal story with us, and for helping to raise awareness and urge for early detection and research. God bless you.

SOURCE: myMeso › A daughter remembers Dad

Atkinson was selected from more than 56,000 entries, voted on by the magazine’s readers. Never a smoker, he was diagnosed with stage IV lung cancer a little more than a year ago at age 38. He hopes to use the golf event as an opportunity to raise awareness for lung cancer funding and research.

In a press release from the Lung Cancer Alliance, which urged its members and supporters to vote for Atkinson, he is quoted as saying, “The game of golf to me is living. I am going out there to enjoy the golf course, to play a great round and to give hope to those who are faced with life threatening illnesses. If I can beat America’s deadliest cancer, then I can definitely break 100 [at Torrey Pines]. It’s going to be a great day, an emotional day, and I can’t wait.”

Lung cancer is the nation’s leading cancer killer, taking more lives than breast, prostate and colon cancers combined.

To enter the contest, Atkinson submitted a 100-word essay describing why he could break 100 at Torrey Pines. Once being chosen as a finalist, he received more than 48,000 of the 117,000 votes cast in the first U.S. Open Contest, conducted by Golf Digest, the United States Golf Association, and NBC Sports. You can watch a video interview with Atkinson and read other features about the foursome at Golf Digest online.

SOURCE: myMeso › Lung cancer survivor to play on U.S. Open course

Compassionate Communications will operate a web site, which will be launched sometime this month, that will feature photos and information about people struggling with cancer, including mesothelioma, and other life-threatening illnesses. Visitors to the site can view profiles, and if they choose to register (for a fee of $25), they will receive five Hallmark greeting cards with pre-paid postage, to send to patients to encourage them, and other support materials. Twenty-five percent of the registration fee will benefit patient-serving organizations.

There is no charge for a patient to register his or her profile. The program operates in cooperation with Hallmark Business Expressions (a subsidiary of Hallmark Cards, Inc.).

Patients may download an “opt-in” registration form and waiver directly from the web site, or call 888-337-6416. The waiver must be completed and returned by mail or fax to Compassionate Communications, which will then provide participants with an account so they can set up their personal profile on the site. There is a place on the waiver form for patients to designate the patient-assistance organization they would like card-sender registration fees to benefit.

You may also get more information or ask questions by emailing Amy at the Lung Cancer Alliance at apearson@lungcanceralliance.org.

SOURCE: myMeso › Compassionate Communications for the sick

The American Lung Association explains that pulmonary fibrosis is also called interstitial pulmonary fibrosis or interstitial lung disease (ILD). These three terms are often used to describe the same condition.

ILD is not lung cancer; it is a chronic lung disorder. ILD involves a thickening of the lung tissue, which becomes stiff and makes breathing more difficult and demanding. ILD can take many forms, and may progress slowly or rapidly, depending on the individual and the nature of the ILD.

The Lung Association reports that the common link in ILD is that it begins with inflammation, which may affect different parts of the lung. Inflammation may lead to permanent scarring of the lung tissue, which is often called pulmonary fibrosis. The interstitum is the tissue between the lung’s air sacs. Scarring begins in this area, which lends the condition its formal name.

Known causes of pulmonary fibrosis include occupational and environmental exposures, including exposure to asbestos, which can damage the lungs and cause scarring (fibrosis).

Other possible causes include a disease called Sarcoidosis, side effects of medication, radiation, connective tissue or collagen diseases, or genetic predisposition, which is not as common. The familial form of the disease is often called familial idiopathic (of unknown origin) pulmonary fibrosis.

When I spoke with Admiral Coady, he mentioned that he did have a family history of pulmonary fibrosis. He knew that his family history, combined with his exposure to asbestos while serving in the Navy, put him at greater risk for the disease, and was vigilant about early screening. He did eventually develop the condition. Sadly, he also later developed lung cancer, although not mesothelioma.

Some ILD improves with medication if treated when inflammation occurs, and some people also need oxygen therapy as part of their treatment.

I hope this answers the questions and clears up any confusion. While pulmonary fibrosis is not related to mesothelioma, it could be considered an asbestos-related disease.

SOURCE: myMeso › Is pulmonary fibrosis linked to asbestos?

A couple of the best forums, in my opinion, are the Lung Cancer Alliance Survivors Support Community, and the many forums sponsored by the LUNGevity Foundation. Recently, both groups have been tackling a difficult topic – how to find joy in daily living when faced with a diagnosis that is often grim.

They ask, “what is the positive side of lung cancer? IS there a positive side?”

Many people credit the forums themselves as a positive, providing a network of new friends, and helping them to find a place where they can be uplifted by other people’s stories of success. They say forums like these help them find relief by sharing their own fears and finding answers to their questions, and by helping them learn they are not alone.

Many echo each other in their feeling that their experience with cancer has taught them to value each day, and not to wait for tomorrow to accomplish goals. That surely would be a blessing for all of us to learn, wouldn’t it?

Some lung cancer survivors handle their challenges with humor. Yesterday I mentioned Debbie, who lives in the UK, who started her own web site about her battle with mesothelioma, and who nicknamed her tumor “Theo,” and provides reports on his condition and sometimes addresses him personally in her blog.

A poster on the LUNGevity forum recently found the humor in a YouTube video, in which two teenage girls spoof a Justin Timberlake rap song, “My Love,” with their own version, “My Lung,” in which they express their affection for their lung health. It seems they made the video as part of a high school health project.

On a similar track, a friend who knows I write about lung cancer sent me a link to an odd little web site called “I Heart Guts,” which features, among other things, plush toys and t-shirts depicting happy, smiling internal organs, including a shirt bearing the slogan “I Lung You.”

What about you? If you have been diagnosed with mesothelioma or another asbestos disease or lung cancer, or if you are helping a family member or friend, how do you find peace and inspiration? What helps you?

One of the things I’d like for this site to do is to provide a resource for people struggling with meso, and a place to network and share ideas. Post your story to the Meso Map, or leave a comment to let me know what inspires you. Tell me if there’s another forum you like, or a web site with good information that I should add to my page’s blog roll.

This site is here for you.

SOURCE: myMeso › Is there a bright side of mesothelioma?

Following is the text of the open letter, along with information about how to contact Clinton’s office. The LCA is urging everyone affected by lung cancer, including mesothelioma, to join their voices in this effort to finally secure the funding that lung cancer has long deserved. It is time to make this a national priority!

An Open Letter to Presidential Candidate Hillary Clinton

April 9, 2008

Yesterday you announced what you would do for breast cancer should you be elected president. When will you announce what you would do for lung cancer?

The $300 million plan you unveiled yesterday to find a cure for breast cancer should be at least doubled for lung cancer since it is killing nearly twice as many women each year as breast cancer. Most women do not even know this.

You do, Senator Clinton, and you specifically cited that fact as part of the justification for Senate Resolution 87, which you co-sponsored and supported and which was passed August 2, 2007. The resolution was a strongly worded policy statement by the Senate calling on the President to declare lung cancer a public health priority and to implement a comprehensive interagency program to reduce lung cancer mortality by 50% by 2015.

The Resolution contains a page and a half of the grim statistics justifying the demand for priority action and specifically notes the enormous under funding of lung cancer research, which receives only seven cents for every federal dollar spent on breast cancer.

Of course we would like to see a cure for breast cancer as we would for all cancers. Thanks to the billions in federal dollars alone that have been invested in breast cancer research and early detection, the 5-year survival rate for breast cancer is now 88%.

Having been massively under-funded, as the resolution notes, lung cancer’s 5-year survival rate is still only 15%. That will no longer be tolerated.

We are not asking for a cure at this point. Just a 50% reduction in the mortality rate for lung cancer, the most lethal cancer, which is now killing more men and women each year than breast, prostate, colon, kidney, melanoma and liver cancers combined.

One in five women being diagnosed with lung cancer now have never smoked at all and they seem to be getting diagnosed younger. Why aren’t women demanding more research? Because they do not know the facts.

You spell out the facts so eloquently in S. Res. 87 and you lay out in the resolution a comprehensive program for lung cancer that is actually quite similar to the one you proposed yesterday for breast cancer.

When will you announce your comprehensive plan for lung cancer? We thank you and look forward to hearing from you on behalf of all those with and at risk for lung cancer, their families, caregivers and friends.

Lung Cancer Alliance

To contact Clinton’s office:

Hillary Clinton General Campaign Headquarters

4420 North Fairfax Drive

Arlington, VA 22203

Ph: 703.469.2008

Fax: 703.962.8600

comments@hillaryclinton.com

press@hillaryclinton.com

SOURCE: myMeso › Ask Clinton about funding lung cancer research

In addition to its lobbying efforts, the other main focus of the Lung Cancer Alliance is to provide care and counseling to patients diagnosed with lung cancer. A big part of this is to help patients find clinical trials for new medications.

“Right now, there are only about three, maybe four, drugs that are approved for treating lung cancer,” explains Rear Admiral Phil Coady, U.S. Navy (Ret.), chairman of the board for the LCA. “Once you get past that, you’re on your own and there’s nothing else.”

The next step can be participation in a clinical trial testing new cancer-fighting drugs. The LCA has a screening process to help patients find a trial that fits their situation.

“It’s bewildering trying to figure out what’s a good trial for you and what you’re eligible for,” Coady said. “We ask patients questions about their progression, what they are willing to do, where they live, lots of other questions, and then we can process that information against a database of ongoing clinical trials and match a patient to where they are a good fit. It gives them another avenue to try something else, to keep hoping.”

They also provide patient support services like the Phone Buddy program, a peer-to-peer support network for people with lung cancer and their family members and caregivers, as well as an online forum where lung cancer survivors and their families can network with other people who are struggling with the illness.

Finally, LCA strives simply to raise awareness about lung cancer, and to promote early screening.

“Our goal is to save lives. Simple as that,” Coady said.

For more information about LCA and its programs, visit www.lungcanceralliance.org or call the Lung Cancer Information Line at 800-298-2436. Tap into the LCA Survivors Community online at http://lungcancer.clinicahealth.com. Call the Phone Buddy program at 800-298-2436.

SOURCE: myMeso › LCA lobbies – Part 3 – Personal Assistance

Rear Admiral Phil Coady, U.S. Navy (Ret.), now serving as chairman of the board for the Lung Cancer Alliance, was never a smoker, and was surprised at the reactions of friends, family and co-workers when he told them he had lung cancer. They said he was brave for sharing the true nature of his illness.

“With lung cancer, there’s a real stigma attached to it. People don’t mention it in obituaries. There’s this perception that people with lung cancer brought it on themselves. I was never a smoker. Twenty percent of the women with lung cancer who are coming down with it every year have never been smokers.”

The stigma tends to inhibit discussion of lung cancer, Coady says, which impacts funding for research. If nobody is talking about it, the awareness just isn’t there, and it is treated as out of sight, out of mind. Meanwhile, lung cancer kills more people each year than breast, colon and prostate cancer combined. Ninety-two percent of people diagnosed with lung cancer die from the disease.

“I believe intently that the solution to lung cancer is making people aware that it is a public health problem and developing a public policy program. National priorities have not been adjusted to make this a national priority,” Coady says. “LCA’s first mission is to get before Congress to make this a national priority. Then, we go back to Congress and put some dollars behind it.

“The numbers we have all stated about the number of people who have died from lung cancer are compelling. It’s a half a million people every three years. There is no other cancer that comes close. But there’s almost no public funding.”

One current lobbying effort involves approaching state legislatures to gather support for an initiative that would donate 1 percent of tobacco tax revenue or tobacco liability settlements collected by state government for lung cancer research.

“Right now we’re using that money to build roads, schools, other infrastructure, but nothing to do with the cancer,” Coady said.

Next: Personal help for those with lung cancer

SOURCE: myMeso › LCA lobbies – Part 2 – the stigma of lung cancer

Chairman Coady’s story

Leading the charge for the organization is Rear Admiral Phil Coady, U.S. Navy (Ret.), who serves as chairman of the board of directors. A career Navy officer, Coady was diagnosed with non-small cell lung cancer in early 2005. He underwent surgery to remove the affected lobe and went through chemotherapy. In late 2005, the cancer recurred with metasteses to his bones. Chemotherapy has been successful in slowing the advance of the cancer for the past two years, and Coady is fighting for other lung cancer survivors.

Although Coady doesn’t suffer from mesothelioma, he is very much aware of the risks posed by asbestos. His work during his time in the Navy very often put him in contact with the substance, he said, and seven of his friends died from mesothelioma since his retirement.

In addition, for 10 years following his retirement, Coady worked as president of the Navy Mutual Aid Association, a non-profit veterans benefit group and life insurance service, where he saw what he thought was a disproportionate amount of lung cancer deaths.

He notes that shipboard service in the Navy, particularly during the years he served, routinely involved exposure to asbestos, second hand smoke and other possible carcinogens. Veterans also were at risk from exposure to chemicals such as Agent Orange, sulfur mustard gas, and other battlefield combustion products.

“I had heavy exposure to asbestos in the Navy,” he says. “I spent a lot of my time as an engineer on ships. In the 1960s there were no precautions about asbestos that I recall at all. We tore out asbestos with hand tools. A dust mask might have been our most aggressive protection.”

With a family history of pulmonary fibrosis, a chronic scarring of the lungs, Coady always had his asbestos exposure in the back of his mind in relation to his health, and had regular CT scans to check for the disease, which he did eventually develop as a result of his exposure. Then, in 2005, the scans also showed lung cancer.

“Ironically, it was really my concern about asbestos that probably saved my life,” Coady said, crediting his regular screenings with catching his cancer early.

Next: The stigma of lung cancer

SOURCE: myMeso › LCA lobbies for lung cancer funding, awareness

The Lung Cancer Alliance is the only national non-profit organization dedicated to providing support and advocacy to lung cancer patients, surviors, families, caregiver and those at risk for the disease.

The Patient Active Concept helps people with lung cancer to approach the choices they make with their health care team with a mind set of active participation, helping them to regain a sense of control in what can be an overwhelming situation.

Here are 10 things The Wellness Community recommends:

• Stay in the moment. Focus on resolving today’s problems and not projecting scenarios of an uncertain future.
• Help others understand what you need. Don’t be afraid to speak up. Be open and honest about how you want others to treat you.
• Do what you enjoy! If you feel well enough, participate in activities you enjoyed before your diagnosis.
• Retain as much control of your life as is reasonable. It might help to make a list of areas you feel you’ve lost control and talk with those who care about you to regain a feeling of comfort in this area.
• Seek relaxation. A calm, controlled physical state may enhance your immune system.
• Steer clear of negative words in relation to the illness. Use hopeful words like “survivor” instead of “victim.”
• Acknowledge your feelings. Find a constructive way to express your emotions, don’t keep them bottled up.
• Become partners with your doctor. Open communication, ask questions and share honest information.
• Spend time with other cancer survivors. In person, on line, or on the phone.
• You can hope for many things. Keep hope for recovery – physical, spiritual, emotional.

These tips are just a tiny bit of the information included in the guide Frankly Speaking about Lung Cancer, available from the Lung Cancer Alliance and The Wellness Community. Contact the Lung Cancer Alliance online, or call 800-298-2436.

SOURCE: myMeso › Become Patient Active

Beginning in 2003, ACS started using the 2000 census for its age adjusted statistical analysis. Since that time, the incidence rate for lung cancer in men rose from 86 new cases per every 100,000 of population to 89, and incidence rates for women went from 51.4 to 55.2.

The LCA points out that in research dollars per death, lung cancer is receiving a fraction of the amounts given to breast, prostate and colon cancers.

The five-year survival rate for breast cancer now stands at 88 percent, prostate cancer 99 percent and colon cancer 65 percent, while lung cancer remains at 15 percent.

The ACS credits screening as a major component in achieving high survival rates. So, part of the problem, according to an article published in the Baltimore Sun Feb. 27, is that there is not yet any effective way to screen for lung cancer.

Reporter Stephanie Desmon found that neither physicians nor major medical societies advocate lung cancer screening at this time, because no one has proved that it saves lives.

Studies have shown that screenings find more cancer, but also more lesions and nodules that may or may not be cancer, Desmon’s report said. This leads to confusion about how to treat these spots, or whether to treat them at all. There also are concerns that lung screenings may lead to further tests, biopsies and surgeries, some of which may be unnecessary or harmful to a patient. Scans that produce “watch and see” results also lead to fear and anxiety, and emotional cost to the patient.

In 2002, the National Cancer Institute launched the National Lung Screening Trial (NLST), which will compare two ways of detecting lung cancer – spiral computed tomography (CT) and the standard chest X-ray. By Feb. 2004, nearly 50,000 people (smokers or former smokers) had joined NLST at more than 30 study sites across the country.

The trial (now closed to further enrollment) is slated to collect and analyze data for eight years to examine the risks and benefits of each type of screening. The NLST is a randomized, controlled study and is large enough to determine if there is a 20 percent or greater drop in lung cancer mortality from using spiral CT compared to chest X-ray. The trial is scheduled to last until 2009.

SOURCE: myMeso › Lung Cancer Leading Cancer Killer