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The Stigma of Lung Cancer

Tori Tomalia is a stage IV lung cancer patient, avid patient advocate and a writer and blogger. You can find her at Lil Lytnin’ Strikes Lung Cancer 

In the spring of 2013, my biggest concern was juggling my time between grad school, work, and caring for my 4 year old son and 2 year old twin daughters. The nagging cough and increasing exhaustion were pushed to the back of my mind as mere side effects of trying to take on too much. As my breathing troubles increased, my doctor began treating me for asthma, but none of the half-dozen inhalers and pills seemed to make any difference. It wasn’t until a CT scan revealed an enormous mass in my left lung that the words “lung cancer” entered my vocabulary. By then, the cancer had spread throughout my bones and liver. At age 37, I was diagnosed with stage IV lung cancer. Inoperable, incurable. Terminal.

How could that be possible? I was never a smoker. Like all of us, I had heard over and over that smoking causes lung cancer, but sadly I have learned first-hand that the truth is much more nuanced. Smoking is bad for you, that is obvious and I doubt you could find a single American who hasn’t heard that yet. But so is living a sedentary lifestyle, so is eating junk food, so is having too much stress. It wasn’t until I received my horrible diagnosis that I learned there is one cancer where patients are blamed for their disease, and made to feel that they do not deserve a chance at a cure.

 

If you think I’m exaggerating, take a look at the numbers:

  • Lung cancer takes more lives than breast, prostate and colon cancers combined – it accounts for 27% of all cancer deaths.
  • Lung cancer is the second leading cause of all deaths in the US.
  • The federal government spends about $26,000 in research dollars for every breast cancer death. They spend less than $1,500 per lung cancer death.
  • 160,000 Americans will die of lung cancer this year. 80% will be never smokers or nonsmokers (people who once smoked but have quit).
  • Lung cancer in never smokers is the 6th leading cause of US cancer deaths.
  • Lung cancer kills almost two times as many women as breast cancer, and three times as many men as prostate cancer.

Lung cancer is the second leading cause of death in the USA! You would think funders would be tripping over each other trying to find better treatments and cures, but the bias against this disease is incredibly powerful, and it is costing people their lives.

Another sobering development is that the incidence of lung cancer in young, nonsmoking women is on the rise. Theories abound, but there is no consensus on what is driving this troubling trend. For me, the “why” is less important. What matters to me is more time with my family, and the only way that is going to happen is through research and more treatments for lung cancer.

November is Lung Cancer Awareness Month, and what I ask of you is to simply become aware. Become aware of this disease that is a threat to every person with lungs. Become aware of the precious nature of each breath you have the joy of taking. Become aware of the challenges facing people with this disease. Become aware that no one deserves this.

And if you still feel that the people of all stripes with lung cancer are not worthy of your compassion, well there’s this old story I heard about throwing stones….

Spotlight on: LUNGevity – The Meaning of Lung Cancer Awareness Month

People who aren’t directly impacted by lung cancer may not know that November is Lung Cancer Awareness Month.

What exactly does that mean and what can people do during November to raise awareness about lung cancer?

Lung Cancer Awareness Month (LCAM) is a national movement originally created by lung cancer organizations, survivors and advocates to dispel the stigmas associated with having lung cancer and to raise awareness of the disparities in lung cancer research during the month of November. This is done in most part by making the general public aware of the lung cancer survival rates and lack of funding for research, and putting a face to the disease.

Most people don’t know that 1 in 15 people will be diagnosed with lung cancer and that over 60% of people who are diagnosed are never smokers or people who quit smoking decades ago. It’s the deadliest cancer killer, killing twice as many women as breast cancer and three times as many men as prostate cancer.

As VP of Support and Survivorship for LUNGevity, I support and get to know a lot of lung cancer fighters. I have supported a patient as young as 16 with stage 4 lung cancer. It can happen to anyone with lungs. LCAM is about sharing the facts about the disease and need for funding, informing the public and talking to media,; it’s about offering resources to patients and providers and highlighting advocacy opportunities to change the public’s perception and outcomes for patients.

LCAM It’s not about smoking cessation or tobacco control. Some people mistake LCAM for an opportunity to talk about the hazards of tobacco and promote smoking cessation. That’s something that we should encourage people to do all year long. But that’s not lung cancer awareness. That would be lung cancer prevention, and only then it would pertain to just 10% of smokers.

Join LUNGevity, survivors and advocates across the nation as we unite to shine a spotlight on lung cancer this month.

Here are some ways you can help make a difference this month:

  • Tell someone that November is lung cancer awareness month.
  • Take a picture with a fact sign or your LUNGevity ‘Bandy’ wristband and let’s make it viral.
  • Share the facts about this disease and let people know that if they breathe, they can get lung cancer too.
  • Distribute materials in and around your area to hospitals and support organizations
  • Share our articles, blogs and videos over social media.
  • Let people know about LUNGevity’s comprehensive lung cancer 101 website
  • Let people impacted my lung cancer know about LUNGevity programs and services
  • Participate in Twitter Chats
  • Create a new event or volunteer or participate in events in your area
  • Volunteer to be a buddy for a patient or caregiver
  • Become a volunteer Social Media Ambassador

Let’s raise awareness this November in honor of the 435 people who die of lung cancer each and every day and the 220,000 people in America who are living with it.