The LUNGevity Blog

On March 24, 2005, at 46 years old, I was diagnosed with Non-Small Cell Adenocarcinoma Lung Cancer. There were no symptoms. Because of chest pain on my right side, I went to the emergency room on Sunday, February 20th. I was concerned about my heart. Heart disease runs in my family, and although I am very physically active, my sister had a heart attack when she was 47. I never found out what was causing my chest pains that day, but I did find out that I had a mass on my left lung. How could I have lung cancer? I don’t smoke. I never knew people could get lung cancer if they didn’t smoke.

My cousin and friend Kathi, age 46, had passed away just 2 years earlier from Small Cell Lung Cancer. This couldn’t be happening to me. How was I going to tell my children? They had just seen this same disease kill my cousin. How could I explain that mine was different? This was the beginning of a new life for me. After many tests over the next month, which included Chest X-Rays, CT scans, PET scans, Needle Guided Lung Biopsy, and a Bronchoscopy/Mediastinoscopy, it was determined that the cancer seemed to be contained within the one lung and had not spread to any lymph nodes.

On April 20, 2005 a lobectomy was performed at University of Maryland Medical Center. I had the upper lobe of my left lung removed. This was the most emotional day of my life. I wrote both of my daughter’s goodbye letters, just in case. I had a wonderful surgeon who was able to perform the lobectomy using a procedure called VATS (Video assisted thoracic surgery). The recovery was much easier because of this newer procedure. I was back at the gym in 2 weeks, walking on the treadmill and using the elliptical machines. Four weeks later, with CT scan in hand, I went back to the surgeon and he said that everything looked good. They did not recommend chemotherapy at this time. I was staged at a 1A, and was told that the benefit of chemo was not worth the risk for my stage of cancer.

I am so thankful that I caught it early, and they were able to do the VATS surgery to get it out of there. The doctor says that I am cancer free now. We never did find out why I was having chest pains on my right side that day, it had absolutely nothing to do with the cancer. The pains went away the next day, and they have never been back again.

Now, I’ve never been a religious person, but I have to say, someone was trying to tell me something. Had I not gone to the ER that day, who knows when my lung cancer would have been detected?

There needs to be more funding into the early detection of lung cancer so that more people can survive this disease.

I just feel so very fortunate that my cancer was accidentally detected early and I was able to be “cured”. I want everyone else to have the chance at early detection. It’s time to treat lung cancer with the same urgency that all other major cancers receive. I have learned so much since being diagnosed with lung cancer. I learned that lung cancer is a horrible disease that is underfunded and has a stigma attached. I learned just how much my husband, my mother, my sister and my children really love me. They were my rocks.

I can’t even begin to describe what it has meant to have my LUNGevity “LCSC friends” to talk to. They are the only ones that truly understand. I joined the LUNGevity Lung Cancer Support Community message boards 6 days before my lobectomy in 2005!

I’ve been cancer free for 8 years now.  I volunteer in my community. I’ve participated in cancer events and I am a volunteer LUNGevity LifeLine Support Mentor to those who are newly diagnosed.

Lois Green of East Greenbush, New York went to NYC to participate in the ING NYC Marathon for all the right reasons.  She and her team trained hard and fundraised non-stop to get to the marathon and to represent their charity, Labrecque- LUNGevity’s Run As One partnership. She wanted to test her endurance as an athlete and she wanted to run the marathon in honor and in memory of those who couldn’t.

But after super storm Sandy hit the north east, the marathon was cancelled.  Instead of joining protests or voicing angry words about the time and money lost with the last minute cancellation of the NYC Marathon, Lois and her supporters shifted their gears.

They donated batteries, wipes and diapers of all sizes for victims of the storm with small children.  They brought bags of clean and gently used clothes to those in need and they scoured for opportunities to be useful and make a difference.

But it was hard for Lois and her team not to feel disappointed that  the marathon was ultimately cancelled at the last minute.

Lois Green of “Team Green” knows something about disappointment. At a routine checkup for asthma, the runner and never-smoker was diagnosed with lung cancer.  It was a shock, but Lois didn’t let that diagnosis and subsequent surgery stop her.  She continued to run and train and participate in marathons for great causes.  Today, she uses her story and survivorship to raise awareness about the disease and advocate for LUNGevity, the largest lung cancer nonprofit in the nation.

Lois also participates in LUNGevity’s Hope Summit, an annual summit in May specifically for lung cancer survivors. When the opportunity became available for Lois to join Team LUNGevity in this year’s NYC Marathon, she immediately signed up and began fundraising with the help and support of her family and friends.

When Lois got home, she was heartbroken to learn about the passing of her friend and fellow lung cancer fighter, Susan Gamble. Another friend, Sara R., just went into hospice care.  The three ladies had met during Hope Summit and as survivors of lung cancer they all shared a passion for advocacy and raising awareness about the disease.

“It’s important to share our stories and work to raise awareness about this disease that claims so many lives.  Lung cancer isn’t a smoker’s disease. Susan, Sara and I never smoked in our lives.  Lung cancer is everyone’s disease.  Anyone with lungs can get it and everyone deserves a chance to survive it. There’s no early detection test for lung cancer. Most people are diagnosed in the latest stages of the disease.  We need to fund more research so that there will be more treatment options and more survivors -so people like Susan and Sara and so many others won’t run out of time.”

Lois Green and her running team have raised almost $10,000 for LUNGevity, and they’re not done yet.  http://events.lungevity.org/site/TR/2012TeamRaiser/General?px=1656886&pg=personal&fr_id=3520

At 43, Diane Mayer was a busy mom, wife and volunteer in her community of Weston, Massachusetts.  A former software consultant with a background in engineering, she now kept her days busy being a mom, volunteering for the PTA and Dress for Success, exercising and staying in shape.  When the never-smoker was diagnosed with stage IV Non Small Cell Lung Cancer in October of last year, she was stunned.

“It was shocking, as I’ve heard most people say about their cancer diagnosis.  After a couple weeks though, I started concentrating on my strength.  I thought that, of all people who would have lung cancer, at least I was lucky to have deep resources in my family and friends.” Diane said.

Diane describes herself as a former “weekend triathlete” with a competitive spirit. She had braced herself for what lie ahead but there were disappointments in finding a treatment that would work to reduce her main tumor.  After gene mutation testing she entered a clinical trial for two months but her tumor grew and the cancer spread to the bones and spine.  After 4 months she was ready to fight.

Finding LUNGevity Foundation

A friend of Diane’s literally walked into the Breathe Deep Washington DC event and told her about the event and LUNGevity Foundation. Her friend sent her a T-shirt and other materials from DC and called it a “care package.”

LUNGevity is the largest private funder of lung cancer research and is dedicated to supporting patients, families, caregivers and building a community for all those affected by lung cancer

“I was immediately interested in the Foundation. It is extremely important that funds continue to be generated for research.  My doctor told me that the genetic mutation that caused my lung cancer was only discovered in 2009.  I feel as if I am riding on the crest of a huge, new wave that is going to knock out cancer.  But we need to keep up the momentum.  Researchers need funding to find and test new potential cures,” Diane said.

Diane has the HER2 gene mutation, which is rare to lung cancer but common to breast cancer.  She is currently being treated with the breast cancer drug, Herceptin, combined with the chemotherapy drug, Navelbine, and her main tumor is shrinking.

Diane and her family found a LUNGevity event in their area to participate in- Breathe Deep Boston. She feels that giving to lung cancer research is important because it seems that every month they are making new discoveries.

“It’s important to get the money to those researchers!”

This summer Breathe Deep Boston ran a two week fundraising challenge and the prize was 4 tickets to a Red Sox game on July 16^th.

Diane’s family members are big Red Sox fans but her daughter Kaitlyn, age 7, had never been to a game.  The challenge inspired them to fundraise earlier than planned through her team, “Diane M”.

Diane won the challenge!  She was hoping to win for Kaitlyn and because July 16^th, the date of the game, was also Diane’s birthday.

She was so excited when notified that she had won the fundraising challenge, she replied in an email;

“This is SO exciting!  I’m on my way to chemotherapy at Dana Farber right now.”

While the Red Sox game was the second of the season for Diane and her husband Kirk, Diane says winning the tickets and being able to take Kaitlyn while celebrating her 44^th birthday has been the highlight of her year so far.

Diane’s fight against lung cancer continues.

When asked what has been her greatest source of support, Diane says;

“There is no one thing or person that has been my greatest support. So many family and friends have reached out at different times and in different ways to offer support. I use the internet to communicate updates to over 250 people.  Depending on what’s going on in the lives of people who read my updates, they offer rides and meals, encouraging messages, and prayers when they are able.  I participate in a support group at my treatment center and sometimes rely on support from the social worker who runs the group.  Some days I wonder if I rely on the spirit of hope and use that as my greatest support.  Without hope, it would be difficult to move forward.”

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If you would like to support Team Diane M and Breathe Deep Boston, please visit www.LUNGevity.org/Boston

If you would like to learn more about LUNGevity Foundation, our research and support resources for those affected by lung cancer, please visit www.LUNGevity.org