The road from caregiver to advocate


Katie Brown

Many people don't know that lung cancer is a disease that can affect anyone. One in 14 people will be diagnosed with lung cancer and over half of those diagnosed will be people who either quit smoking decades ago or who never smoked a day in their lives. Lung cancer can happen to anyone regardless of age, gender, race, health or smoking history. Its patients have felt stigmatized, neglected and unsupported in their communities. Lung cancer is the least funded cancer even though it kills more people each year than breast, prostate, pancreatic and colorectal cancers combined.

These were the statistics I read while Google searching the disease that had suddenly invaded our lives. I had fallen into the role of caregiver and patient advocate without any warning or training manual. It was the hardest job I've ever had and at the same time, the most rewarding.

When my dad was diagnosed with lung cancer in 2002, his diagnosis came out of the blue and we had no local support. The isolation of a lung cancer diagnosis was intense. With little treatment options, incredibly low survival rates and no support or resources specially for his disease, the odds of survival for him began to plummet. This was our devastating reality 10 years ago. My dad died 11 months and 21 days after his diagnosis and he fought fiercely to live every one of those days. I promised my dad then that I would never stop working to support those affected by lung cancer. And I haven't.

Today, 11 years later, I am the director of support and advocacy for the largest lung cancer nonprofit in the nation, LUNGevity Foundation. I have created and managed support programs for people impacted by lung cancer and survivorship conferences that take place nationally and regionally. But it's been a long road of advocacy.

I encourage people who feel a calling or mission to become advocates for what they believe in to make a plan and stay the course. We need more of you in the cancer community to be the voice for those who can no longer speak.

I do have a few pieces of advice:

Take care of yourself.

While you are caring for the life of someone your love, don't forget to take care of yourself. You won't be useful to anyone if you are burned out and exhausted. Fighting cancer and fighting for someone's life is incredibly hard. Mistakes get made when we are tired or emotionally charged. Don't forget to take care of yourself. You'll do a better job at being a caregiver to someone else if you do. Take care of yourself and ACCEPT help from others.

Find the unmet need.

In my case and with a disease like lung cancer, our immediate unmet need was support for patients and families. Eventually that turned into access to information about the disease and treatment options and more funding for research so that there can be more survivors. All of those unmet needs put together are HUGE but taken a bit at a time they can be addressed. I'm not a researcher or a doctor, but I can navigate a patient during their journey to find the answers they may be looking for. I wasn't a social worker or therapist, but I could create a peer to peer support resource for people to walk the lung cancer journey together and build ways in which patients and families could help themselves. Find your unmet need and come up with an action plan to address it.

Connect with others.

There are other caregivers, family members, survivors and advocates who share your passion to advocate for your cause. Seek them out and connect with them on message boards, websites, and advocacy groups in your local community. Have phone calls, twitter chats, and meetups to discuss ways you can raise awareness and make an impact. If one person can make a difference, image what a group of like-minded people can do!

Be gentle on yourself.

I wish I would have taken this advice more. As caregivers to those we love we tend to take every victory and every setback personally. We also sacrifice our health and needs while caregiving. I remember when my dad passed away thinking that I hadn't done enough to "save him", as if anything I could have done would have stopped the progression of his cancer. "I didn't search the internet enough. I didn't explore 3rd or 4th opinions. I didn't tell enough jokes, pray enough or keep up a positive attitude 100 percent of the time. He didn't try alternative therapies." And a dozen other what-ifs and second-guessing-myself thoughts that flowed through my mind.

Today, I know the outcome would have been the same no matter what I did then, and from that experience I take away the precious memories and moments I was able to share with him as his caregiver and his daughter.

Looking back now I know the landscape of this disease enough to know that having access to information and treatment options, access to clinical trials and medications for side effects will make the road smoother for someone else. I know that having others to talk to can alleviate feelings of fear and guilt and isolation. Those are the unmet needs I've been trying to address.

Seek out support for yourself and your loved one while you are actively walking through cancer. And when you are no longer caregiving and ready to be an advocate, surround yourself with others who believe in your cause, will support you and help you to succeed.

Finally, don't lose hope.

Even if things don't work out exactly like you planned, don't lose hope that one day there will be more. More support, more treatment options, more awareness, more research and more survivors. I absolutely believe that there isn't anything greater than hope. It picks you up when you've been knocked down. It hugs you when you feel defeated, carries you when you receive good news, and it's the whispered promise that everything you have done and everything that you will do, matters.

Katie Brown is the Director for Support and Advocacy for LUNGevity Foundation.


What doubling lung cancer survival means to me


Cassie Gilmore
It can be difficult for me to see all the way to 2022. Like so many diagnosed with lung cancer, I have to take things one day at a time. I was diagnosed fewer than two years ago, and I finished chemotherapy in June 2012.

And yet the National Lung Cancer Partnership's vision to double lung cancer survival by 2022 creates a new way to look to the future, adding an extra sense of purpose every day to my support of the lung cancer movement. I am certain that when survival statistics rise, public awareness and research funding will rise with them.

I found out I had lung cancer on February 9, 2012, during an afternoon I should have spent teaching my sweet third grade students. Instead, my family and I gathered together to hear a doctor share the results of a biopsy. I remember watching the doctor as he strung together a series of words; "tumor is malignant... found this late... talk to an oncologist."

The magnitude of those words was life altering. I was 29 years old. How could this have happened to me?

As the reality of living with lung cancer began to settle in, it became a part of my new life. But it was not a one-way relationship. I realized that lung cancer needs a face, a strong voice and above all, the research necessary to find cures.

I am not naïve about what it will take to get us there. So, barely two months after my diagnosis, I began my journey as a fundraiser for the 2012 Free to Breathe Dallas/Fort Worth Run/Walk. I was in the middle of chemotherapy and I had just a month before the event, but I raised over $10,000 for lung cancer research and patient programs. Suddenly, I had a new mission in life.

Looking to keep the momentum going, I attended the Partnership's 2012 Lung Cancer Advocacy Summit and continued my fundraising efforts in 2013. To date, I've already raised over $40,000.

Ultimately, I want to help researchers find more cures for lung cancer, and doubling survival is an important step on that journey. As a survivor who has tested positive for two genetic mutations, I know how much scientific progress is being made on the molecular level. With so much happening on the research front, it's meaningful to me that the Partnership recognizes that research, molecular tumor testing, clinical trials and patient education are the future of survival.

My personal goal for 2022 is simple: I would like to be alive. One day at a time, I am building toward that goal.

My most recent CT scan showed no signs of cancer. My fundraising totals continue to grow. Together, I know we will beat this disease. Together, we will double lung cancer survival, and we will continue working until a cure is available to everyone.

Cassie Gilmore is a lung cancer survivor in the Dallas/Fort Worth area of Texas. You can read more about the National Lung Cancer Partnership's goal to double the five-year lung cancer survival rate by 2022 at


The time has come for lung cancer screening


To paraphrase Winston Churchill, "This is not the end, but it is certainly the beginning of the end." I firmly believe that 2012 could be remembered as the year that changes the course of lung cancer given the efforts under way by patient advocates and medical leaders to bring responsible, safe and effective early detection to the at risk public.

In addition, by bringing best practices in a continuum of care linking prevention, early detection and treatment, we will stimulate more research and new approaches to identifying those at risk, preventing and treating lung cancer, more effective smoking cessation protocols and a better understanding of other causes of lung cancer.

Last February Lung Cancer Alliance has launched first of a kind "The National Framework for Excellence in Lung Cancer Screening and Continuum of Care," guidance for both consumers at risk as well as sites offering care.

The National Framework presents in three parts. First, it advises the public on their rights--starting with the right to know if someone is at risk for lung cancer. Risk factors include smoking history; family history of lung cancer; environmental exposures to radon, secondhand smoke, asbestos and other known carcinogens; exposure to battlefield fuels; history of other lung diseases. If someone has one or more of these risk factors, they need to talk to their doctor about screening with a low dose CT scan.

Second, the National Framework lays out guiding principles of screening and the continuum of care for screening sites. LCA contacts each one to ascertain that they are a multi-disciplinary team and that they follow a coordinated continuum of care for screening, diagnosis and disease management that complies with comprehensive standards based on best published practices. Once identified, LCA lists these sites and alerts the public on

Third, the National Framework establishes the Lung Cancer Screening Excellence Forum. This Forum will be comprised of leading medical and health professionals as well as industry and insurance representatives. The Forum is a mechanism for the discussion of how best to collect data on outcomes, analyze the data and build feedback improvements into the system of care. If tissue, blood, breath and urine samples are collected during the screening process, biomedical research into all types of lung cancer, precancerous conditions and improved treatments can be accelerated and better coordinated.

The time has come for lung cancer screening and its continuum of care to be embraced. It is a matter of life or death. If we move swiftly and responsibly we can reduce lung cancer mortality by half by 2020.

Laurie Fenton Ambrose
President & CEO
Lung Cancer Alliance


Women and lung cancer: Time to turn the tide


There will be more than 220,000 people diagnosed with lung cancer in 2011. They will be our brothers, sisters, grandparents, co-workers, closest friends. They will be our parents.

Last year, my mom was diagnosed with stage 4 lung cancer. She's never smoked. That's a fact that I always feel obligated to share when talking about her diagnosis, but sincerely hope one day won't be such an entrenched part of the lung cancer conversation.

Our family was shocked by the diagnosis and even more appalled to learn that lung cancer is the No. 1 cancer killer among both men and women, accounting for more than 1 in 4 cancer deaths. Surely, we thought, a cancer this prevalent and virulent - one that kills 80 percent more women than breast cancer - must receive significant government funding and public support. We were wrong.

Women Paying a Fearsome Price

As a daughter, my thoughts quickly turned to the more than 105,000 women who are diagnosed with lung cancer each year. This is a disease that kills more women annually than breast, ovarian and uterine cancers combined. Over the last several decades, women have come powerfully and effectively together to organize, mobilize and build critical public awareness and support for the diseases that threaten them most, particularly heart disease and breast cancer. With lung cancer diagnoses among women up six-fold since 1930, I couldn't understand why women had not applied the same conviction, energy and savvy to lung cancer. Then I looked at the numbers.

Lung cancer is poised to take the lives of 71,000 women this year and up to now, there hasn't been much reason to be hopeful. The overall five-year survival rate lingers at 15 percent, where it has been for decades. While new treatments and funding have propelled the survival rates for breast cancer to 90 percent, lung cancer remains in an unfortunate area of catch up.

With so few survivors, it's difficult to build and sustain a movement. And for those lucky enough to survive this dreadful disease, a sense of community can be hard to come by.

Rebecca's Tale

For my friend Rebecca, who was diagnosed with lung cancer at age 28, living with a lung cancer diagnosis has been an isolating experience. "Like many Americans, I was clueless when it came to lung cancer," she says.

"Every October, for years, I would dutifully pin pink ribbons on my bags and participate in breast cancer walks in solidarity for women. But then when I was diagnosed with lung cancer, I learned that it kills far more people than any other cancer (breast, colon, ovarian, melanoma, brain and leukemia combined), and there were hardly any walks, ribbons or support groups out there. I felt alone."

Since my mom's diagnosis, I have spoken with so many women who echo Rebecca's feelings of isolation and loneliness. Lung cancer is a disease that has never received public attention or research dollars in proportion to its prevalence or virulence. Precious little is said or written about it. The result is that the most lethal cancer killer of all runs rampant.

Together, We Can Change This

Determined to turbo-charge the lung cancer discussion, my family recently launched a nationwide educational campaign – Leaders of the Lung Cancer Free World – intended to generate greater public awareness and understanding of lung cancer. With three non-profit partners – the CHEST Foundation of the American College of Chest Physicians, the National Lung Cancer Partnership and Uniting Against Lung Cancer – the Leaders campaign aims to focus public attention on this unrelenting killer that affects smokers and non-smokers alike. The campaign has four distinct target issues: women, political leadership, the smoking stigma and general public awareness.

There are many ways to get involved. You can sign a petition encouraging the President and Congress to declare lung cancer a national health crisis, donate to one of three partner organizations, ask your representatives to support the Lung Cancer Mortality Reduction Act, follow the campaign on Facebook and Twitter or take a pledge to stop smoking.

Anyway you slice it, lung cancer is a national health crisis requiring our attention. Over the next five years, more than 1,000,000 Americans will be diagnosed with lung cancer. They will be our mothers, fathers, sisters, grandparents, coworkers, closest friends. Together, we can help save many of them.

Arielle Densen is a co-founder of Leaders of the Lung Cancer Free World, a lung cancer advocacy group, and created the James Sivartsen Prize in Pediatric Cancer Research at the Hebrew University in Jerusalem. For the past six years, Arielle has served as a wish granter for the Make-A-Wish Foundation.


I'm not dead yet!


A few years ago, I saw Monty Python's Spamalot, the stage musical version of the 1975 comedy film Monty Python and the Holy Grail. At the souvenir stand, I could not resist the T-shirt with the words, "I'm not dead yet." I wore it a few times, and eventually it worked its way to the bottom of the pile in the closet and was forgotten. Little did I realize then just how much that phrase would come to mean this year.

In March, I went for a routine checkup and, as a longtime smoker, I agreed with the doctor that a chest X-ray should be done. Long story short, I was diagnosed with stage 2B non-small cell lung cancer in April. Actually, I was diagnosed with lung cancer; staging was done at the cancer center I went to 10 days later.

I chose to dive into learning all I could about lung cancer during those 10 days between appointments. It is amazing how little hope there is on the Internet. I soon came to realize that the one phrase that seemed to be missing from all of the articles I read was "if found early."

"If found early" is a phrase that is pounded into our heads in all of the cancer awareness commercials.

That same lack of hope started to appear on the faces of family and friends as I broke the news to them. Each of them had a personal link to a sad story about lung cancer. They all came up with a "if you need anything" or "my prayers are with you." Very few said anything like "you can beat this" during that first conversation. Thank goodness I have a longtime friend who not only beat lung cancer, but he did so nearly 10 years ago! This knowledge, along with his constant encouragement, gave me the strength to scream, "I'm not dead yet!" every time I read an article or saw someone trying to hide a tear when they saw me. OK, I didn't really scream it at people, but I did point to the phrase on that T-shirt.

I wore that shirt two or three times per week as I went through two rounds of two chemo meds, 28 days of radiation and the weeks between the end of treatment and surgery. I lost a lot of hair and got dark circles under my eyes. I was very tired most days. Instead of letting myself get worked up while waiting for all the pre-op tests, I took a trip to Maine and Canada to do and see things I had never experienced before.

In August I had extensive surgery to remove the lobe of the lung the tumor was in, as well as a few ribs and parts of some vertebrae that the tumor had been touching. While I spent a week in the hospital recovering, when I could get online, my status updates always included the phrase, "I'm not dead yet." My surgeons told me that the surgery went well and they would see me in two weeks. Recovery was very long and painful, but that phrase became my mantra, and I kept chugging along.

I'm not dead yet! And I don't plan to be for a very long time! At my post-op appointments I was told that I had a "complete pathologic response," which means that the cancer had been completely killed even before the surgery. Here I was, less than five months later, being told I was cancer-free.

Lung cancer is not a death sentence. I know this, because: I'm not dead yet!

Mary Tracy-Dolobowsky is a mother, wife, biker, nature/wildlife photographer, two-time cancer slayer (melanoma & lung) and lung cancer awareness blabber-mouth.