Finding Your Lung Cancer Team: Tips from Patient Advocates

Patients Voices Can Change the Shape of Research

In lung cancer research, the patient’s voice matters. Patient advocacy can shape research and can impart to the research community the sense of urgency patients deal with every day.

“Patients may not realize just how powerful their voice can be in their own lung cancer treatment plan or in helping others through their journey.” – Kim Norris

There has been a real change in lung cancer research that’s just happened over the last 10 years or so. When Kim Norris, LCFA’s co-founder and President, first got into lung cancer patient advocacy years ago, the treatments available and the survival rates were not encouraging. Now, there’s so many reasons for newly diagnosed patients to be hopeful.

Although 5, 10, even 15 years doesn’t sound like a long time, in lung cancer research, it’s an eternity. More new treatments have been approved in the past five years than have been approved in the last 20 combined. And new discoveries are continually happening at such a rapid pace that is sometimes hard to keep up with them all.

Thoracic oncologist Dr. Raymond Osarogiagbon is encouraged by the power of the patient’s voice to explain what it means to be living with lung cancer.

“We are making a lot of progress in lung cancer, and that is true. And that progress has come very quickly. It seems like literally every few weeks, every few months, there’s a new groundbreaking discovery.”

LCFA’s Speakers Bureau Discuss Finding Their Team

At this year’s annual get-together (held virtually) the LCFA’s Speakers Bureau talked about the power of finding lung cancer patients who share the same experience, and sometimes even the same biomarker.

This shared experience often helps newly diagnosed patients find their own voice to advocate for the best treatment plan. As more people are living longer, healthier lives with lung cancer, many find meaning in advocating for others, helping newly diagnosed patients know the right test to get, and the right questions to ask to be part of their own treatment plans.

How Patients and Their Teams Use Their Voices

Some turn their advocacy into activism, lobbying for increased lung cancer funding, and raising awareness of lung cancer as the number one cancer killer. Terri Conneran is very actively using her voice by serving on lung cancer advocacy boards, working on events, supporting various foundations, and maintaining a voice for lung cancer patients online.

“Those of us in the lung cancer community are living with this silent disease growing within us and we need to give it a voice. If I can help one person, my goal is met.” – Terri Conneran

Ivy Elkins has completed Advocate Training through the American Association of Cancer Research. She then created and moderates two Facebook groups – close to 500 members strong – where they share information regarding clinical trials and treatments. Their primary goal is to work as a group to get the attention of lung cancer researchers.

However, simply finding a support group is an excellent first step.

The Importance of Finding Your Lung Cancer Team

Members of the LCFA Speakers Bureau share what it means to be living with lung cancer. Some advocates use their anger, frustration, and sadness as motivation for their advocacy. Frank McKenna thinks it’s important that lung cancer patients stay involved in things like helping other people.

“Even if we don’t personally reach out and need that help, I think so many people rely on our experiences and they reach out to us. It’s just, I think it’s been very rewarding to me when somebody says you’ve been a godsend because you’ve given me this information, I can’t get it anywhere else.”

Voicing the Pros and Cons of Using “Dr. Google”

Kim Norris agrees that finding and connecting with other lung cancer patients is much easier today. Patient groups can help them find the right questions to ask and the right test to have done.

“Thanks, of course, to a quick Google search. But it helps to know what you’re searching for. Searches like lung cancer survivor stories or KRAS patient groups will generally lead to useful and actionable information that can help patients connect to others going through the same experience, as advocate Terri Conneran learned.”

Terri Conneran’s doctor told her to stay off of Google because she’s going to see nothing but bad news. Connecting with a local lung cancer group, she learned more about individual biomarkers like EGFR and ALK. This knowledge led to her questioning her doctor regarding biomarkers and the discovery that her cancer has the KRAS biomarker.

Speaker Ivy Elkins did a Google search, even though her doctor warned her against that. But she looked for blogs and other people experiencing similar life situations. Yovana Portilla also did a Google search looking for “lung cancer support group” to find other people that have been through this before me for advice along her lung cancer journey.

Other Ways To Advocate for Lung Cancer Research

Not all lung cancer patients can devote unlimited time to reading journal articles, understanding clinical trial design, and communicating effectively with scientists and physicians. However, there are some effective ways to advocate right from your home.

Build a network of support with family members, friends, community members, and fellow advocates living with lung cancer. Find an online community. There are more specific communities advocating for specific lung cancer biomarkers.

These are some of the biomarker communities our Speakers Bureau participate in:

EGFR Resisters
ALK Fusion Facebook Group
ALK Positive
The ROS1ders
KRASkickers

There has never been a more important time for the U.S. to invest in medical research. Thanks to bipartisan support in Congress, the National Institutes of Health (NIH) has received significant funding increases for the last six years.

Monitor important legislation for lung cancer research. On the National Cancer Institute website there are summaries of legislation proposed affecting federal health policy. This page is updated as relevant legislation is introduced.

Then contact your Congressional representatives. Ask them to make sustained funding for lung cancer research a national priority starting with funding important lung cancer research policies currently up for legislative approval.

Watch lung cancer patient and advocate Gina Hollenbeck discuss the importance of turning up the volume of the patient’s voice.

Other Legislative Resources

NIH Office of Legislative Policy and Analysis (OLPA) – this office is the liaison between NIH and Congress

National Conference of State Legislatures – Cancer-Specific State Legislation – where you can find information on cancer-specific state legislation

National Conference of State Legislatures – Health-Related State Legislation – where you can find information on health-related state legislation

Kaiser Family Foundation – this foundation provides state-specific information related to cancer and health

Finding your lung cancer team can be your key to

• Getting the best information on your specific lung cancer and the best treatment options
• Connecting with a support group of people who know EXACTLY what you’re going through
• Making the lung cancer journey of someone coming behind you easier