New Evidence That The Stigma Against People With L...
Lung Cancer
New Evidence That The Stigma Against People With Lung Cancer Hasn’t Gone Away
Published May 31, 2019
According to a new study, presented at the most important cancer conference of the year, the well established stigma around lung cancer, caused largely by the misconception that only smokers get lung cancer, is still a big problem for people who are diagnosed with the disease.
“The stigma for lung cancer is a big concern for patients and for family members and friends who are involved with care for the disease,” Dr. David Tom Cooke, MD, FACS, head of general thoracic surgery at UC Davis Health, in Sacramento California tells SurvivorNet.
“All you need to get lung cancer are lungs,” says Dr. Cooke.
“When you are dealing with somebody with lung cancer, you are trying to help them beat the disease, not trying to make them feel guilty about their choices,” Dr. Cooke continues. “Automatically, off the bat asking ‘do you smoke?’ may not be the best approach, because it’s accusatory. It’s time to partner with that person — if you’re a care provider, if you’re a friend or family — to try to beat this cancer.”
The new survey involved 205 oncologists who treat lung cancer, 208 patients with lung cancer, and 1001 members of the general public, and they were surveyed in 2018 with the same survey instrument from a 2008 survey plus 5 to 15 additional questions at the end.
The survey was carried out with identical methodology by phone and online between June 6 and July 26, 2018 as it was in 2008, and researchers used statistical analysis to compare the data collected from both years. According to researchers, 57 percent of oncologists indicated that patients with different cancers are thought about, approached, or handled differently which is similar to the number in 2008.
70 percent of patients surveyed in 2018 felt that there was a stigma associated with having lung cancer, a significant increase from the 54 percent who felt there was a stigma in 2008.
“Patients are perceiving stigma at higher levels and oncologists are not reporting any improvement,” says the study.
Dr. Brendan Stiles, Thoracic Surgeon at Weill Cornell Medicine and NewYork-Presbyterian, seemed to have a similar message to Dr. Cooke on the topic of lung cancer stigma when we spoke with him last year. “I certainly don’t give my patients a hard time if they’re vaping; I actually don’t give them a hard time if they’re still smoking,” Dr. Stiles said.
Dr. Brendan Stiles on his approach to caring for smokers who get lung cancer
“It’s very, very hard to quit, and they’ve got so many things going through their mind and so much anxiety at the time of their surgery that I don’t have a policy, ‘hey, gotta stop smoking,'” Dr. Stiles continued. “I think surgery is a great learning opportunity, it’s a great time for them to be in the hospital where hopefully they’ll stop after that. But, it’s tough to really beat people up about that in my opinion.”
There has been a lot of improvement in medical preparedness for lung cancer, according to data collected from doctors in the study. Sixty seven percent of oncologists said they feel they have adequate treatment options for metastatic lung cancer, versus 36 percent in 2008.
But there didn’t seem to be a decrease in doctors reporting a stigma around lung cancer. There was a marginal increase in oncologists who said there is a stigma associated with the disease, from 60 percent in 2008 to 68 percent in 2018. There was also a marginal increase in doctors who said that patients blame themselves, from 57 percent in 2008 to 67 percent in 2018.
On the topic of their medical care, patients were similarly optimistic. Eighty seven percent of patients reported being satisfied with their medical care, and 71 percent of patients were satisfied with their treatment options.
But 40 percent of patients surveyed in 2018 agreed with the statement that “patients with lung cancer are treated differently by doctors and nurses” compared to 26 percent ten years prior, and the primary difference patients felt they were treated differently was “received less sympathy from medical staff.”
A lot of lung cancer survivors have previously spoken to SurvivorNet about the lung cancer stigma. Amanda Kouri, 28 years old, was diagnosed with lung cancer five years ago.
Amanda had asthma, so when she was having issues with breathing doctors assumed, because of her age, that the asthma was the cause. “I saw many, many doctors. I had many X-rays, and nobody thought to give me a CT scan or take a look further because they assumed I either had pneumonia or I had asthma.”
She had never smoked, and that was part of the reason doctors didn’t consider lung cancer to start out with.
“The reason why lung cancer is so deadly is because it’s caught so late because we assume that everyone smokes or we assume that it only happens to 65-year-old people,” Amanda says, “when it’s really a terrible disease that can take anyone at any age, any gender, any race … and we’re not looking for it.”
Lung cancer survivor Amanda Kouri talks to SurvivorNet about the stigma surrounding lung cancer
“It’s not a smoker’s disease, but the stigma is incredibly difficult,” said Kouri.
And that stigma is part of the reason that such a difficult cancer receives less funding than other types of cancer. “It’s why we are the number one killer cancer with the lowest amount of funded research,” said Kouri. “And that is absolutely correct. It is the deadliest cancer with the lowest amount of funded research.”
Now Kouri is a lung cancer advocate, raising money to fund new early detection methods so that other people can benefit from finding their cancer at an early stage like she did.
Learn more about SurvivorNet's rigorous medical review process.
According to a new study, presented at the most important cancer conference of the year, the well established stigma around lung cancer, caused largely by the misconception that only smokers get lung cancer, is still a big problem for people who are diagnosed with the disease.
“The stigma for lung cancer is a big concern for patients and for family members and friends who are involved with care for the disease,” Dr. David Tom Cooke, MD, FACS, head of general thoracic surgery at UC Davis Health, in Sacramento California tells SurvivorNet.
“All you need to get lung cancer are lungs,” says Dr. Cooke.
“When you are dealing with somebody with lung cancer, you are trying to help them beat the disease, not trying to make them feel guilty about their choices,” Dr. Cooke continues. “Automatically, off the bat asking ‘do you smoke?’ may not be the best approach, because it’s accusatory. It’s time to partner with that person — if you’re a care provider, if you’re a friend or family — to try to beat this cancer.”
The new survey involved 205 oncologists who treat lung cancer, 208 patients with lung cancer, and 1001 members of the general public, and they were surveyed in 2018 with the same survey instrument from a 2008 survey plus 5 to 15 additional questions at the end.
The survey was carried out with identical methodology by phone and online between June 6 and July 26, 2018 as it was in 2008, and researchers used statistical analysis to compare the data collected from both years. According to researchers, 57 percent of oncologists indicated that patients with different cancers are thought about, approached, or handled differently which is similar to the number in 2008.
70 percent of patients surveyed in 2018 felt that there was a stigma associated with having lung cancer, a significant increase from the 54 percent who felt there was a stigma in 2008.
“Patients are perceiving stigma at higher levels and oncologists are not reporting any improvement,” says the study.
Dr. Brendan Stiles, Thoracic Surgeon at Weill Cornell Medicine and NewYork-Presbyterian, seemed to have a similar message to Dr. Cooke on the topic of lung cancer stigma when we spoke with him last year. “I certainly don’t give my patients a hard time if they’re vaping; I actually don’t give them a hard time if they’re still smoking,” Dr. Stiles said.
Dr. Brendan Stiles on his approach to caring for smokers who get lung cancer
“It’s very, very hard to quit, and they’ve got so many things going through their mind and so much anxiety at the time of their surgery that I don’t have a policy, ‘hey, gotta stop smoking,'” Dr. Stiles continued. “I think surgery is a great learning opportunity, it’s a great time for them to be in the hospital where hopefully they’ll stop after that. But, it’s tough to really beat people up about that in my opinion.”
There has been a lot of improvement in medical preparedness for lung cancer, according to data collected from doctors in the study. Sixty seven percent of oncologists said they feel they have adequate treatment options for metastatic lung cancer, versus 36 percent in 2008.
But there didn’t seem to be a decrease in doctors reporting a stigma around lung cancer. There was a marginal increase in oncologists who said there is a stigma associated with the disease, from 60 percent in 2008 to 68 percent in 2018. There was also a marginal increase in doctors who said that patients blame themselves, from 57 percent in 2008 to 67 percent in 2018.
On the topic of their medical care, patients were similarly optimistic. Eighty seven percent of patients reported being satisfied with their medical care, and 71 percent of patients were satisfied with their treatment options.
But 40 percent of patients surveyed in 2018 agreed with the statement that “patients with lung cancer are treated differently by doctors and nurses” compared to 26 percent ten years prior, and the primary difference patients felt they were treated differently was “received less sympathy from medical staff.”
A lot of lung cancer survivors have previously spoken to SurvivorNet about the lung cancer stigma. Amanda Kouri, 28 years old, was diagnosed with lung cancer five years ago.
Amanda had asthma, so when she was having issues with breathing doctors assumed, because of her age, that the asthma was the cause. “I saw many, many doctors. I had many X-rays, and nobody thought to give me a CT scan or take a look further because they assumed I either had pneumonia or I had asthma.”
She had never smoked, and that was part of the reason doctors didn’t consider lung cancer to start out with.
“The reason why lung cancer is so deadly is because it’s caught so late because we assume that everyone smokes or we assume that it only happens to 65-year-old people,” Amanda says, “when it’s really a terrible disease that can take anyone at any age, any gender, any race … and we’re not looking for it.”
Lung cancer survivor Amanda Kouri talks to SurvivorNet about the stigma surrounding lung cancer
“It’s not a smoker’s disease, but the stigma is incredibly difficult,” said Kouri.
And that stigma is part of the reason that such a difficult cancer receives less funding than other types of cancer. “It’s why we are the number one killer cancer with the lowest amount of funded research,” said Kouri. “And that is absolutely correct. It is the deadliest cancer with the lowest amount of funded research.”
Now Kouri is a lung cancer advocate, raising money to fund new early detection methods so that other people can benefit from finding their cancer at an early stage like she did.
Learn more about SurvivorNet's rigorous medical review process.