Fighting the Stigma of Lung Cancer

Something happened the other day that I am ashamed to tell you about. I snapped. Here's what happened. I went over to the Punta Gorda office of State Representative Paige Kreegle to pick up the proclamation made by Governor Crist declaring November as Lung Cancer Awareness month. I was talking with his administrative aid, Zac, who had kindly done the work necessary to get the Governor to make the proclamation and I found myself yelling at him for a passing comment he innocently made as I was leaving the office. The comment was something to the effect of "Yeah, Paige can really get behind this (Free to Breathe 5K lung cancer awareness) event. He hates smoking." It was the last three words that set me off. "This is not about smoking," I said, "it's about LUNG CANCER!"

I tried to straighten out the young man, by explaining something to him. I should have been calmer, but it raised the hair on the back of my head and I let go. (Sorry Zac. It is not you. It is the stigma surrounding lung cancer that makes me angry!)

I have found that the first words I am typically greeted with when someone learns I have lung cancer is, "oh, were you a smoker?" It is no wonder. To get people to quit smoking, we are constantly reminding them that smoking increases the risk of the developing the disease. It is natural to want to verify the relationship between lung cancer and smoking. But to those of us on the receiving end of such comments, there is an implication that we are to be blamed for bring the disease on ourselves. There is most definitely an attitude of "you did this to yourself, so live with the consequences." The starkest evidence is the lack of funding for lung cancer research and early detection.

Here are some facts that nobody wants to say outloud. Yes, we all want to see people quit smoking. Smoking is not good for you an is ONE OF the direct causes of not only lung cancer, but of other cancers and lung disease as well as heart disease. (Radon is also KNOWN to be a direct cause of lung cancer.) We need to make sure that young people never start smoking and avoid the addiction. Once you start smoking is a very difficult drug habit to break.

But the fact is that, even had I quit 10 or 20 years ago, I would STILL have had an elevated risk for developing lung cancer. Quiting does NOT eliminate the risk. That, of course, is not advertised because if long time smokers believed that they are going to contract lung cancer anyway, why quit? I understand the logic. The problem is that, because of the stigma of lung cancer, we are not investing in research for early detection and treatment. Lung cancer is the number one cancer killer, with one of the lowest survival rates, and gets the least amount of funding. Explain that to me.

This year there will be over 200,000 new cases of lung cancer diagnosed. Something like 10% - 15% of the new cases will be people who NEVER smoked. That is 20,000 - 30,000 cases a year. Over 100,000 of the new cases will be former smokers (people who quit prior to their diagnosis). So if you take these two groups together, about 60% of current lung cancer patients either never smoked or quit years ago. Who is really to blame here? The addicts and former addicts or a society that allows tobacco companies to sell their product without much regulation?

Lung cancer advocates like me have gotten together and are trying to do something about fighting the stigma of lung cancer. We feel that supportive care and sympathy (not blame) is particularly important to patients living with lung cancer. Lung cancer patients have feelings of guilt and are isolated by an unspoken stigma associated with their diagnosis.

The stigma does more than just blame smokers. It pushes the responsibility of the disease away from society where it belongs and onto the patients and their families, where it shames them into silence. This silence leads to fear, isolation and marked underfunding for the early detection and treatment of lung cancer. Twice as many women will die from lung cancer than breast cancer, but federal funding for breast cancer research this year is a record $1.1 billion; lung cancer, by comparison, will receive only $199 million, down from $240 million last year.

I am not ashamed to have lung cancer. I am a victim, like many of the 70 million former smokers, who were addicted to tobacco and finally quit. And I am fighting for all of the people who will eventually develop lung cancer. There needs to be an accepted screening protocol to detect lung cancer before it develops. That effort has the potential to save millions of lives. Help me by joining our Free to Breathe 5K Run Walk on October 31st! Go to www.freetobreathe.org to register now.