The power of connection in the lung cancer community

Aug 29, 2017
The power of connection in the lung cancer community

Making connections and finding support is crucial for anyone diagnosed with cancer. It may be even more important for those with lung cancer. Some evidence suggests that the stigma of the disease and its consequences may not only affect psychological health, but also the physical health and care of patients.1-3

With its mission to ensure that surviving lung cancer is the expectation, not the exception, Free to Breathe sees the building of relationships between patients with lung cancer as a key objective. In partnership with the Penn Medicine Abramson Cancer Center,  Free to Breathe will be hosting the 9th Annual Focus on Lung Cancer Conference on September 29, in Philadelphia. The three-quarter-day symposium will convene those living with lung cancer, those who have survived it, and their loved ones, to share their experiences. Making meaningful connections and openly discussing lung cancer is one way to overcome the stigma associated with the disease.

“Many patients tell us that having someone to talk to helps them tremendously,” says Mary Henningfield, PhD, Director of Scientific Education and Research at Free to Breathe. “Someone who is living with lung cancer has insights that are valuable to others who are facing a similar diagnosis and sharing experiences can help overcome the sense of isolation patients can feel when dealing with lung cancer and its treatments.”

The event will provide educational sessions, including a keynote session entitled ‘Personalized Genetics: Understanding your Genetic Test Results’, a special educational session on ‘New Discoveries and Treatments in Immunotherapy for Lung Cancer’, break-out sessions on living with cancer, and a panel discussion with physicians and researchers answering questions from attendees.

Advances in therapeutic options, living with lung cancer and dealing with emotional side effects will be key topics at the event. For those who can’t attend in person, a live stream will be offered, enabling anyone to connect with the conference in real time.

The conference is meeting the need to hold live events as an opportunity for patients, caregivers, advocates, and researchers to come together.  According to a survey of 2016 attendees, 72% noted that it was very important or somewhat important to be able to connect with other people who had faced a diagnosis of lung cancer, either as a patient or caregiver. A total of 86% of respondents reported a need for a large lung cancer community to raise awareness and share information about specific types of lung cancer.

“Many patients with lung cancer feel isolated, even among other patients who have different types of cancer. Unfortunately, the stigma of lung cancer carries a heavy burden,” explains Dr. Henningfield.

The conference is already having a positive effect. At last year’s event, a newly-diagnosed patient spoke to someone who had been living with lung cancer for more than a decade. She had searched the Internet for information on lung cancer and only saw statistics about the poor survival rates and dismal prognosis. “Meeting someone who was a success story and had walked in her shoes meant a great deal and brought hope,” Dr. Henningfield states.

An important objective of the Focus on Lung Cancer Conference is to help those diagnosed with lung cancer realize they are not alone, she adds.

“Free to Breathe is a partnership of lung cancer survivors, advocates, researchers, healthcare professionals and industry leaders united in the belief that every person with lung cancer deserves a cure.

“We hope that conference attendees will continue to be engaged with other patients, with Free to Breathe and with Abramson Cancer Center, as we all share the goal of making a difference against this terrible disease.”

To find out more about the 9th Annual Focus on Lung Cancer Conference, please click here.


References

  1. Chapple A, Ziebland S, McPherson A. Stigma, shame, and blame experienced by patients with lung cancer: qualitative study. BMJ. 2004;328(7454):1470.
  2. Cataldo JK, Jahan TM, Pongquan VL. Lung cancer stigma, depression, and quality of life among ever and never smokers. Eur J Oncol Nurs. 2012 Jul;16(3):264-269.
  3. Sriram N, Mills J, Lang E, et al. Attitudes and stereotypes in lung cancer versus breast cancer. PLoS One. 2015;10(12):e0145715.
The power of connection in the lung cancer community

Mary F. Henningfield, PhD, is the Director of Scientific Education and Research at Free to Breathe. Dr. Henningfield has MS and PhD degrees from the University of Wisconsin–Madison, where she investigated the uncoupling protein of brown adipose tissue. She held a post-doctorate position in the Hematology Department at Temple University before joining the pharmaceutical industry. Dr. Henningfield has held positions at Abbott Laboratories, ProEd Communications, Inc., Covance, Inc., the Navicor Group, and Envision Communications. Her work has been published in peer-reviewed journals, including Biochemical Journal, Biochemistry and Cell Biology, Pharmacotherapy, and Comparative Biochemistry and Physiology. In 2016, Dr. Henningfield joined Free to Breathe to use her expertise to support patients and caregivers facing lung cancer. She oversees the strategic development and execution of patient education and advocacy initiatives, as well as manages their research grant program.

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