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Survey Identifies Common Gaps in Lung Cancer Knowledge

Survey Identifies Common Gaps in Lung Cancer Knowledge
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Published on March 30, 2021

How Much Do You Know About Your Lung Cancer?

More than one in 10 patients with lung cancer do not know the specific type they have, according to survey findings from the Global Lung Cancer Coalition (GLCC), which considers itself the “international voice of lung cancer patients” with organizations in 30 nations.

Nearly one in five did not feel involved in decisions about their treatment and care, and one-tenth felt they had “never” or only “sometimes” been treated with dignity and respect by their healthcare team.

The findings highlight the need for healthcare teams to engage with patients to address their individual needs. Lung cancer is the leading cause of cancer death among both men and women, making up almost 25% of all cancer deaths, according to the American Cancer Society (ACS). Each year, more people die of lung cancer than of colon, breast and prostate cancers combined, the ACS reports.

“I was shocked that some people didn’t know what type of lung cancer they had because, if they didn’t have that information, how could they understand their treatment options for making decisions about their care?” Vanessa Beattie, of the GLCC, said in a press release. The results were scheduled to be presented at the European Lung Cancer Virtual Congress (ELCC 2021 Virtual) last week.

She added: “Receiving a diagnosis of lung cancer is devastating and it’s crucial that patients receive good quality information from the start, so they are empowered to make informed decisions about their treatment. At diagnosis, they should be offered information — written or in another form — about their type and stage of cancer and a potential treatment plan which they can discuss with their cancer team and their family.”

Global Lung Cancer Coalition Survey

The survey was conducted in January 2020 across 17 countries. Of the 907 patients who responded, 63% were from Europe. The GLCC includes 41 patient organizations from 30 nations, including Canada and the United States.

Of the European respondents, 11% did not know what type of lung cancer they had (13% globally), 19% did not feel involved in decisions about their treatment and care (18% globally), and 11% felt they had “never” or only “sometimes” been treated with dignity and respect by their treatment team (9% globally).

Professor Sanjay Popat, a consultant medical oncologist from the Royal Marsden NHS Foundation Trust in London, said the results should serve as a wake-up call to cancer healthcare professionals.

“The statistics from the GLCC survey paint a bleak picture, and at least 11% of patients not knowing their type of lung cancer is a very damning statistic,” Popat said in a press release. “We want patients to be empowered to make decisions about how and where they want to be treated and that can only happen if we have good communication at all stages, with shared aims and goals.”

Key Questions to Ask After a Lung Cancer Diagnosis

A lung cancer diagnosis can be overwhelming, scary and confusing. Make sure you get the information you need so you can make informed decisions for the best outcome. Here are three key questions to ask your oncologist:

  1. What type of cancer do I have? Not all lung cancers are the same or managed the same, according to Dr. David Waterhouse, a lung cancer specialist and researcher at Oncology Hematology Care in Cincinnati, Ohio, who spoke with Patient Power Co-Founder Andrew Schorr. “Is it a small cell? A non-small cell? If it's non-small, is it squamous or adeno? Does it have a ROS mutation or an ALK mutation or a BRAF mutation? Does it have an EGFR mutation? I want to know all of those characteristics,” he said. Matching genetic mutations to targeted therapies has been shown to improve patient outcomes in lung cancer.
  2. What stage is my cancer? Is it localized, or has it spread? Treatment will depend on the stage, according to Dr. Waterhouse.
  3. Is there a clinical trial that would be appropriate for me either at your institution or elsewhere? “I don't have a problem with people getting second opinions in my clinic,” Dr. Waterhouse said. “I think doctors who don't like second opinions are either insecure, don't know their business or both. I don't want that doctor, and I don't want my patients to think of me that way.”

-Megan Trusdell

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