The Lung Association is reaching out to lung cancer survivors and their families in the hopes of hearing about their personal experiences, but they say the stigma attached to the disease is proving to be a challenge.

Robert MacDonald’s father died from lung cancer in 2011. He says the community and health professionals were very supportive, but says his father stigmatized himself.

“You know, where I did this to myself after many years of smoking,” says MacDonald.

But Louis Brill, the president and CEO of the Lung Association of Nova Scotia, says other factors can cause lung cancer too.

“We know radon gas, which is prevalent in Nova Scotia, is the second leading cause of lung cancer,” says Brill. “We’re all aware of tobacco use being the number one cause, but for us it doesn’t matter.”

Brill says the organization needs to hear from families affected by the disease. He says work has been done over the last year and a half, reflecting on people’s lung cancer journeys.

“We want to stop, ask questions, and listen so that their experience can help guide us to make sure that we’re on the right track, that we’re identifying the needs,” says Brill.

Lung cancer is the leading cause of cancer deaths in Nova Scotia, claiming more lives than breast, prostate and colon cancers combined.

More than 700 people die from lung cancer in Nova Scotia every year but the Lung Association says the needs of people impacted by the disease are underserved.

“Now there are some of those services, but one of the ways they’re underserved is how do we couple that information? How do we provide it so that it’s easy to access?” says Brill.

MacDonald started working for the Lung Association after his father passed away. He says he knows firsthand how important it is for survivors and their families to share their experiences.

“Just knowing what families go through, you know, the devastation that a disease like this can bring on a family, letting people know that make decisions, what kind of comforts…or how to maneuver through the system,” says MacDonald.

He hopes others will take part in the discussion to help improve upon the services the association provides.

With files from CTV Atlantic's Jacqueline Foster