MAKE SOME NOISE for lung cancer awareness

Woman offers new take on lung cancer

 

Monday April 25, 2011

PITTSFIELD -- The link between cigarettes and lung cancer helped launch the anti-smoking movement, but according to one local woman, it also spurred a stigma around those who have the often deadly disease -- tobacco users or not -- and she is working on the Web to turn that attitude around.

"People don’t want to talk about lung cancer because it’s the taboo cancer," said Christine Dwyer of Becket. "Everyone considers it the smoker’s cancer, and it isn’t."

The founder of www.cancergrief.com and, more recently, a site, blog and Facebook page under the header "Make Some Noise for Lung Cancer Awareness," Dwyer, 45, watched a step-grandfather, step-father and close friend die from lung cancer -- some smokers, some not. Now, she uses online tools to spread the word that not everyone with lung cancer used tobacco -- and even those that did should not be made to believe that they deserve their illness.

"My stepfather smoked like a chimney and died at 72. [My friend] Brad never touched a cigarette in his life and he died at 31," Dwyer said. "Lung cancer doesn’t discriminate."

Dwyer has met people who are ashamed to tell others about their disease, fearing they’d be implicitly blamed with the question, "Well, were you a smoker?"

"That’s really a rude question, and it’s very offensive in the lung cancer community," Dwyer said. "Smoking puts you


 


at risk, and no one is going to argue that fact, but the fact is there are so many chemicals in the air and water that anybody who breathes is at risk."

More people in the U.S. die from lung cancer than from any other type, according to the Centers for Disease Control and Prevention. In 2007, more than 200,000 people were diagnosed with the disease and almost 160,000 died because of it.

Dwyer’s Facebook group has more than 2,400 members and several websites she created are well-trafficked, she said. The sites are a compilation of news and medical updates about lung cancer; Dwyer pointed out that she’s careful not to dispense medical advice.

Online medical resources can sometimes add to the confusion of a new diagnosis, said Kathy Hart, director of care navigation at Berkshire Medical Center, who said she meets many people who feel swamped by the variety of suggestions or proclamations made about their disease on the Web.

"There’s so much information out there that sometimes it can be misleading or not applied to the patient, and can get the patient into an overwhelming state very quickly," she said.

But sites like "Make Noise for Lung Cancer Awareness," which Dwyer tries to be less about prescription and more about emotional support, can offer solace to people feeling isolated by their new illness.

Diagnosed with lung cancer in 2008, Barbara LeRiche, 44, of Guilford, Conn., said Dwyer’s online community was a way not to feel alone when she started her treatments.

"You hear every time about breast cancer, but you don’t hear about people with lung cancer," LeRiche said. "So it’s just nice to have somebody to be able to talk to, and somebody to be online, and just to have that support and know that you’re not going through with it by yourself."

To reach Amanda Korman:
akorman@berkshireeagle.com
(413) 496-6243

Newsworthy mentions of MSN4LC~

Lisa Brandel, the Widow Lady talked about MSN4LC  and the Book in her blog...

 The Widow Lady

 

Ice Hockey and Lung Cancer

 

Ice Hockey and lung cancer

   by Christine Dwyer

Not a well publicized pairing but one that does exist.

As I have been working on getting my second Lung Cancer Awareness game with the AHL Springfield Falcons off the ground and building a bigger and better event, it occurred to me that there have been more than a few cases of lung cancer in and around the hockey community.

 

Sure we have probably all heard about Mario Lemieux and his amazing battle with Hodgkin’s Lymphoma, a type of blood cancer, and how he returned to the game following his treatments for the disease with his Pittsburgh Penguins. 

More recently Jason Blake, formerly of the Toronto Maple Leafs was diagnosed with chronic myelogenous leukemia a rare, but highly treatable form of cancer. Jason played the entire season while being treated for his cancer.

There have been others in the hockey world who have battled cancer; Probably the most notable name is John D’Amico an NHL linesman battled bone cancer and leukemia. John died in May of 2005.

Kent Douglas a defenseman and coach who played for the AHL’s Springfield Indians went on to win 3 Stanley Cups with the Toronto Maple Leafs. Kent died of cancer in April of 2009.

Robert Muller, a 2001 draft pick of the Washington Capitals died at the age of 29 from a malignant brain tumor known as  glioblastoma multiforme. Robert left behind 2 small children.

Former Chicago Blackhawk Pete Horeck died at the age of 86 after a lengthy battle with prostate cancer.

 

These are just a few of the cancer related losses to the game. My focus, however is Lung Cancer. As many of you know, Lung Cancer is the number 1 cancer killer in the world. Lung Cancer claims more lives per year than breast cancer, kidney cancer, melanoma and prostate cancer, COMBINED.  The relentless stigma of lung cancer being the smokers cancer is not only undeserved but it has been a stumbling block for acceptance as well as funding and research opportunities for far too long.  There are so many people who have never, ever smoked who are being diagnosed with this killer as well as people who quit the habit years and years ago. Young children are being diagnosed now, some as young as 3 or 4 years old!

Probably the most well known name in the NHL today battling lung cancer is NHL coach Pat Burns.  This is the third bout with cancer for Mr. Burns who has opted not to undergo treatment for his lung cancer.  Burns has coached the Montreal Canadiens, Toronto Maple Leafs, the Boston Bruins and the New Jersey Devils. Burns was diagnosed with Lung Cancer in the spring of 2008.*<see footnote>

Another hockey great, even more well known than Pat Burns, is The Great One himself, Wayne Gretzky. Wayne’s Mom, Phyllis died of Lung Cancer in December of 2005. Phyllis was 64.

Other victims of this disease include the following.

In 1965, Murray Balfour, of the famed “Million Dollar Line” for Chicago and later a Boston Bruin, died less than 8 weeks after exploratory surgery revealed an inoperable lung cancer tumor. Balfour was 28 years old.

Former ice surface crew supervisor for the Boston Garden, Armando Rabbottino died at age 80 from lung cancer. Rabbotinno retired in 1992 after 37 years of service with the NHL community.

In December of 2001, Philadelphia Flyers coach Bill Barber’s wife Jenny died from Lung Cancer. She was 48.

Paul Quarrington, musician and writer died at age 56, in January 2010 of Lung Cancer. Quarrington made many literary contributions to the game of hockey including magazine articles as well as novels such as “King Leary” and “Home Game”.

 

I bring you all of this information in an effort to show that there is no discrimination when it comes to Lung Cancer. It can and does strike everyone, from all walks of life. From everyday people, to actors and actresses as well as athletes who are in top form in order to play the game they love.

My hope is to bring not only awareness but acceptance and understanding of this horrible disease to the forefront, not only of the hockey world but the entire world. It is time to erase the stigma and prejudices associated with lung cancer and work to raise truthful and honest awareness of the disease as well as the desperately needed funding to stop this killer once and for all.

 

 

 *Since this was originally written there has been another huge loss to the Hockey Community. Coach Pat Burns passed away from lung cancer on November 19, 2010. 

Cancer patients have 30% chance of developing brain mets..

AM     Updated: Tuesday, June 15, 2010, 8:29 AM

The initial cancer diagnosis is devastating enough.

What many patients don't realize, however, is that they have a 30 percent chance -- and maybe higher, depending on the initial site of the cancer -- of developing brain metastases, or brain mets, months or years later.

Brain mets are tumors that spread to the brain after originating elsewhere in the body. Some of the common symptoms are progressively worsening headaches, peripheral vision loss, trouble speaking or weakness in the limbs. Brain mets also may sometimes cause seizures.

As many as half of lung cancer patients go on to experience brain mets. Breast, melanoma and kidney cancers are the three other types with the greatest risk of metastasizing to the brain. Each year, more than 140,000 patients receive a diagnosis of brain mets. The amount of time that passes from a person's primary cancer diagnosis to a brain metastasis diagnosis varies widely, often depending on the type of primary cancer.

cleveland-clinic-doctor-gene-barnett.jpgDr. Gene Barnett

"Over the years it has become apparent that most patients at risk are not aware of their risk or of the warning signs," said Dr. Gene Barnett, director of the Brain Tumor and Neuro-Oncology Center in the Cleveland Clinic's Neurological Institute.

"Historically, there has been a reluctance to broach the topic with patients," Barnett said. "Nobody wants to tell patients about bad things like that."

The Clinic and the North Region of the American Cancer Society have joined forces on an educational campaign called B-Aware, designed to increase awareness about brain mets.

B-Aware was announced last week during a Clinic symposium on brain metastases.

"The point is not to scare people, but to empower them," Barnett said of the campaign. "Ten to 20 years ago, the outcome was uniformly bleak. But there have been substantial advances in treatment over the years.

"Whereas most would die with [brain mets], now they don't," he said. "It's important for patients to be aware that this could happen to them -- and that they do have many useful treatment options [beyond standard radiation therapy alone] to provide an extended quality and quantity of life."

Cancer survivors who are diagnosed with brain mets should seek treatment from a hospital with a comprehensive brain-tumor program that best fits their needs, Barnett said.

"The American Cancer Society has been working for a lot of years on cancer prevention, nutrition, lifestyle, early detection . . . but a lot of times that focus is on primary or initial prevention," American Cancer Society North Region vice president Dave Grams said.

"While we have some information out there, [the Clinic] did a great job of pulling it together and packaging it to fit well with a lot of our priorities," said Grams.

Brain mets aren't "an area that has been focused on as much as it could have been," he said.

Contact Angela Townsend: atownsen@plaind.com or 216-999-3894.

 



BIG News for Lung and Pancreatic Cancers!

It's Official! Lung Cancer Alliance Hails Landmark Victory! President Obama Signs High Mortality Cancer Bill Into Law


Lung Cancer and Pancreatic Cancers Now Research Priorities

WASHINGTON, Jan. 3, 2013 /PRNewswire-USNewswire/ -- Just hours before the end of the 112th Congress, constitutional deadline for approval of a bill passed by that Congress, President Barack Obama today signed into law the first legislation requiring comprehensive plans of research action for high mortality cancers, with lung and pancreatic cancers given priority status for expedited attention.

This landmark legislation, included in the National Defense Authorization Act of 2013, requires the National Cancer Institute (NCI) to develop scientific frameworks for addressing cancers with survival rates of less than 50%, with first priority attention to lung and pancreatic cancers. The framework must be sent to Congress within 18 months.

"Thank you Mr. President and thank you Congress for giving all of us in the lung cancer community and all those at risk for lung cancer the best possible present for the start of a new year," said LCA President and CEO Laurie Fenton-Ambrose , whose national organization launched the legislative effort on lung cancer six years ago.

"This is a new era for lung cancer," she said. "We are now out of the shadows."

"Our mission is to cut lung cancer mortality in half by the end of the decade," Fenton-Ambrose continued, and we have added another tool in our arsenal to help make this goal a reality. This legislation, coupled with the validation of CT screening as a bigger potential life saver than any other cancer screening method, and with the Veterans Administration and the Department of Defense starting to screen high risk veterans and military, this goal is absolutely possible."

Fenton-Ambrose thanked the entire lung cancer advocacy community for their untiring efforts and unwavering support over the past 6 years to see the legislation passed.  She also thanked the Pancreatic Cancer Action Network (PanCan) for joining forces to see the bill through to law.  Lung cancer's five year survival rate is 15%, and pancreatic cancer's is 5% - both little changed since the so-called War on Cancer legislation was passed forty years ago.

Lung Cancer Alliance's legislative saga started in 2006 during the 109th Congress with the passage of a Senate resolution calling lung cancer an urgent public health priority. The original sponsors were then Senators Hillary Rodham Clinton , Chuck Hagel and Mike DeWine .

In the 110th Congress, bipartisan resolutions were passed unanimously by both Houses and in the 111th Congress bipartisan, bicameral legislation was introduced to authorize a comprehensive plan of action. The primary sponsors included Senator Dianne Feinstein (D-CA), then Senator and now Kansas Governor Sam Brownback , Senator Johnny Isakson (R-GA), Senator John Kerry (D-MA), and House of Representatives members Donna Christensen (D-VI), Lois Capps (D-CA), Ed Whitfield  (R-KY) and Frank LoBiondo (R-NJ).

"We are deeply grateful to all these current and former members of the House and Senate for their leadership and unfailing support," said Fenton-Ambrose.

Fenton-Ambrose also thanked Senator Sheldon Whitehouse (D-RI) and Congresswoman Anna G. Eshoo (D-CA), primary sponsors of the pancreatic cancer bill, and PanCan CEO Julie Fleshman and Director of Government Affairs Megan Gordon Don for the team effort that finally made the bill a law. 

The final product, the Recalcitrant Cancer Act, represents a compromise worked out between the Congress and the administration on the Pancreatic Cancer Research & Education Act and Lung Cancer Mortality Reduction Act. 

Lung Cancer Alliance (LCA), www.lungcanceralliance.org, is committed to ending injustice and saving lives through an alliance of advocacy, education, and support. LCA provides live, professional support, referral and information services for patients, their loved ones and those at risk for lung cancer; advocates for multiple millions in public health dollars for lung cancer research; and conducts national awareness campaigns.

Follow Lung Cancer Alliance on Facebook: www.facebook.com/lungcanceralliance. Follow us on Twitter: @LCAorg.

Media Contact:
Kay Cofrancesco
kay@lungcanceralliance.org
302-521-5716

SOURCE Lung Cancer Alliance



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