Allison Gilchrist

Patients with lung cancer and their caregivers can now call a toll-free number to receive emotional support and answers to some of their questions about life after diagnosis and maximizing quality of life.

The free hotline is run by Free to Breathe, a lung advocacy organization.

Cheryl Petersen, the program director and main contact on the support line, explained to 

 that patients with lung cancer often have a hard time connecting with someone who understands their condition.

“With a five-year survival rate of only about 17 percent, it can be hard for patients to find other lung cancer survivors in their local community,” she said. “In fact, many of the survivors and patients [Free to Breathe] talks to have never met another lung cancer survivor.”

To help ensure that the hotline is as helpful as possible for those affected by lung cancer, Free to Breathe conducted research and interviews using patient and caregiver perspectives to guide the program’s design.

Patients and caregivers alike stressed the importance of education about the condition. Many respondents explained that the level of distress they faced at the time of diagnosis precluded them from internalizing much of the information they were given.

One survivor diagnosed with stage 3B non-small cell lung cancer said of his diagnosis, “The only thing I heard the pulmonologist say is that I was going to die. He didn’t really use those words, but that was all that I heard.”

The most requested information surrounded the following topics: lung cancer diagnosis and treatment; molecular testing; second opinions and centers of excellence; and clinical trials.

Another area of concern identified by Free to Breathe was the relatively weak support structure for caregivers. They specifically requested guidance on how to care for loved ones in the best way, concrete ideas for what they could do to help their loved ones, ways to discuss important topics about care when the disease progressed and reminders of the importance of self-care and a healthy lifestyle.

Each member of the Free to Breathe staff who answers phones undergoes training to ensure that callers receive a consistent level of support. The staff does not provide any medical or nursing advice, but rather encourages patients to consult with their health care providers in regard to any issues related to their health.

 that, ultimately, the patients and caregivers surveyed to help guide the hotline program “indicated their enjoyment of survivor stories, especially when the details were similar to their own circumstances.”

One survivor, speaking about an “empathetic ear” and information about a lung cancer diagnosis, said of hearing survivor stories, “It’s like shining a light in a dark tunnel to aid individuals in navigating that tunnel…and to do it with hope is key.”

Patients and caregivers can call the support line at 1-844-835-4325. It is staffed Monday through Friday 8 a.m. to 4 p.m. CDT (9 a.m. to 5 p.m. EST).

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New Hotline Lends an Ear to Patients With Lung Cancer

The Oral Cancer Foundation’s (OCF) online support community affords patients and caregivers alike an opportunity to discuss their experiences about an often-overlooked disease.

Oral cancer is a low-incidence disease with a high mortality rates — about 45 percent at five years. As a result, amassing a large, continually growing support network of survivors to volunteer, fundraise, or raise awareness for the disease is nearly impossible.

OCF launched its social Patient Support Forum in 1999, five years before Facebook, which is often seen as a gold standard of online interaction tools.  The forum currently boasts 11,000 active members and many compartmentalized discussion rooms, ranging from managing eating difficulties to coping with mood swings stemming from aggressive opioid regimens.

Brian Hill, OCF’s founder and executive director, spoke with 

 about the forum and how the organization’s staff interacts with the patients and active topics. Many OCF staff members are themselves survivors. In this respect, OCF finds itself deeper in the trenches of the cancer patient experience than other charities and nonprofits operating working within the same disease state.

“People may go to a support group on social media for a while … but the thing those groups do not offer is attachment to an organization that will roll up their sleeves to fight the fights that need addressing,” Hill says. “We don’t just listen. We are engaged in issues by the needs of the community that we serve.”

OCF’s professional advisors, physicians, and oncology nurses read and directly comment on conversations to provide clarity and evidence-based counseling where needed. They can also recognize areas where further investigation could help to improve the quality of life for all those affected by oral cancer.

A strong and engaged support network is crucial for people affected by oral cancer, as the disease often comes with physical disfigurements and other quality of life changes that preclude patients from ever truly returning to their pre-cancer lives.

“The morbidity of [oral cancer] treatments is significant. Loss of the tongue, lower jaw, or another anatomical facial features are things that impact a patient’s ability to go back to being a functioning part of society again,” Hill noted.

Beyond the patients themselves, the forum serves as a particularly important vehicle for caregivers. Many people forget that caregivers, too, are victims of cancer. They often have minimal emotional outlets in their daily lives as they work to hide their frustrations and stress from the patient.

“The load on caregivers in this disease is profound,” Hill explained. “They have to not only be the patient’s support mechanism emotionally, but they also have to care for them, their nutrition, medications and meet other needs as well.”

 that after operating the forum for all these years, there is “no way” OCF could not be as engaged as intimately as the organization is “on so many levels with the issues that impact patients directly.”

“The forum is an excellent method for OCF to keep its ear to the ground on new issues,” Hill says. Talking to patients and participating on the forum “is the most fulfilling part of my job,” he added.

With oral cancer being a rare and often overlooked disease, it may be difficult for patients finding a support group. The Oral Cancer Foundation's online forum is here to help.

Patient Forum Helps Break Silence on Oral Cancer

Lung cancer remains a silent epidemic among women, despite the number of patients who lose their battle to the disease each year.

The American Lung Association (ALA) conducted its second annual Women’s Lung Health Barometer — a survey of more than 1,000 adult women to measure participants’ awareness, knowledge, and perceptions about lung cancer.

The results show that just one percent of women considers lung cancer to be a “top of mind” threat to their health, despite the fact that lung cancer kills nearly twice as many women as any other cancer each year.

With this knowledge gap in mind, the ALA launched LUNG FORCE — an initiative with the expressed mandate to “unite women to stand together 

In practice, LUNG FORCE seeks to make lung cancer a public health priority by bringing awareness to the issue and calling for policy changes and increased research funding for the disease.

American Lung Association national president and CEO Harold P. Wimmer, the architect behind the LUNG FORCE initiative, told 

 that, in general, the “strong, pervasive stigma associated with lung cancer” is the greatest challenge the initiative faces.

“Sadly, stigma plays a major role in the lung cancer experience for most people struggling with this terrible disease,” he lamented. “Feelings of fear, guilt and blame affect their quality of life and may impact quality of care.”

This stigma may be exacerbated for women, as lung cancer is sometimes perceived to be a “man’s disease.” Over the last 38 years, the lung cancer mortality rate for men fell significantly, while the mortality rate for women skyrocketed.

Stigma may also contribute to the fact that only of 25 percent of women reported to the ALA Health Barometer that they’ve ever discussed lung cancer with their health provider. Just 17 percent of lung cancer cases among women are diagnosed early.

For women, lung cancer survival statistics are “sobering,” said Wimmer. One woman in the US dies from lung cancer every eight minutes.

Though the awareness rates about lung cancer as a public health epidemic is not where the ALA wants them to be, Wimmer does note that progress has been made in the last year.

Congress passed a budget bill this December that included a funding increase for the National Institutes of Health (NIH). The NIH estimates that it will invest $362 million in lung cancer research during 2016.

Additionally, the FDA approved seven new drugs to treat lung cancer in 2015. Several more lung cancer drugs are currently in the development pipeline.

Still, the ALA is calling for more investment in cancer research, and has committed to redoubling efforts to make sure future austerity limits do no hamper this progress.

“The bottom line is that no one deserves cancer. Anyone can get lung cancer, and everyone deserves sympathy and support,” Wimmer concluded. LUNG FORCE is “a bold initiative to take lung cancer out of the shadows and address this disease head on.”

Allison Gilchrist

New Hotline Lends an Ear to Patients With Lung Cancer

Patient Forum Helps Break Silence on Oral Cancer

Reminder from the American Lung Association: Lung Cancer Does Not Gender Discriminate

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