Changing the Outlook on Lung Cancer

March 3rd, 2014 - by Amy May

Most people don’t think about lung cancer until it hits the people they love.  I lost an uncle to lung cancer several years ago.  He was taken very quickly after his diagnosis and we didn’t really have time to wrap our heads around it.  I didn’t really think about it again until my brother’s wife, Sara, was diagnosed with lung cancer at the age of 31.

She wasn’t feeling well before their honeymoon. When they returned, there were months of trying to find out what was happening with her. She was so young and looked so healthy.  I couldn’t believe that she could have a terminal disease.  She had no risk factors.  It was such a shock to everyone.

It’s a helpless feeling when someone you care about is diagnosed with lung cancer.  You want to do something but you don’t really know what to do.  You want to help but you don’t really know how.

When Sara was finally diagnosed with lung cancer in 2010, Sara and John did a lot of research to find out as much as they could about the disease and what resources were out there, and they found out about LUNGevity.

When we found out about the unbelievable statistics around lung cancer survival rates, and that lung cancer could happen to anyone even if they never smoked, we wanted to do something to raise awareness about the disease. I thought, “Ok, we need to get in here. What can we do?” We decided to turn to LUNGevity and start with a running event, Breathe Deep Seattle.

We had never put on an event before.  LUNGevity has an events team that walks you through the steps of organizing an event and makes the entire process less overwhelming.

The first year of Breathe Deep Seattle, my husband, Scott, and I were helped by our family and friends. Through that event we built a community of volunteers, people who had been personally impacted by a lung cancer diagnosis and people who wanted to help our cause.

I have an event volunteer page on Facebook, and whenever anybody visited the page, I asked whether they’d like to help. Nine times out of 10, they said yes. People stepped up in many ways. If we put out a call to find someone who could pick up food at Costco or who could find a sponsor or who knew a graphic designer, someone always jumped right in and took care of it.  We felt incredibly supported by the people who stepped up to volunteer.

Many people ask me now about lung cancer. What I talk about first is Sara and her story. People are often surprised because, in their mind, lung cancer doesn’t happen to someone young and healthy.  Lung cancer can happen to anyone.

What gives me hope is seeing what’s going on with lung cancer research and young doctors getting into the field and making a commitment to detecting and curing this disease.

I’m also filled with hope when I see survivors. We had about 20 survivors participate in our 2013 event. Our event was a place for them to connect with each other in Seattle and celebrate their survivorship.

My hope for the next five to ten years is that—short of lung cancer being gone!—people will understand more about the disease so that it’s not a forgotten or lost one. I’m hoping for more awareness and dedication to the cause. I’m hopeful that together we can really change the outlook for lung cancer patients and their families.

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5 Responses to “Changing the Outlook on Lung Cancer”

  1. Su Benson says:

    You rock Amy – and have made a huge difference!!

  2. Mary Herold says:

    Your courage and your family’s commitment to bring awareness about all types of lung cancer to the public is inspiring. It is through people like you that we will eradicate all cancers. Congratulations on a job well done. Sara is smiling.

  3. jodi cramer says:

    My husband was only 36 and was misdiagnosed 4 times before collapsing 3 weeks before he passed away from lung cancer. Because of his age, even the hospital treated him as if he had an infection because they hadn’t seen anyone under 60 with a mass that size of lung cancer. He died a week after his biopsy results proved he had a progressive lung cancer. I wish there was more awareness of symptoms and more education on lung cancer given to orthopedic surgeons. After he passed away, I read that a lot of people go to orthopedic surgeons first just as he did. We might have had a little more time with him if we knew the signs. He thought as the orthopedic surgeon did, that he had shoulder pain from carrying and napping the wrong way with our baby.
    I would like to help in anyway to get the word out about lung cancer. Our two little girls are now forced to grow up without their father and if I could help give other families longer with their loved ones, that would help me through all of this.
    I would have never known about other cases of younger people suffering or passing away from lung cancer if I hadn’t researched it after he passed away. I’d like to help get the word out.

  4. Amy May says:

    Jodi – I’m very sorry to read about your husband. I share your motivation to help other families spend more time with their loved ones. LUNGevity does have an Advocacy group. See the “LinkUp” link on this page: http://events.lungevity.org/site/PageServer?pagename=v2_SupportAndAdvocacy

    Also, you could help with a race in your area (or start one!). LUNGevity can help you help get the word out.

    Take Care, Amy

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