The path to becoming a lung cancer advocate is seldom a straight one. For some, being an advocate comes somewhat naturally, while others might be reluctant to throw their hat in the ring. Serving as an advocate might just be Colleen Conner Ziegler’s calling and why she easily became part of a NSCLC advocacy group. A stage 4, ALK+ lung cancer patient from upstate New York, Colleen was not new to being an advocate, albeit for an entirely different cause. Prior to her 2015 diagnosis, Colleen advocated for her child who is on the autism spectrum. Little did she know how important those advocacy skills would be in her own life.
Advocating for Answers
For fifteen months leading up to the discovery of her lung cancer, Colleen would be misdiagnosed – a not uncommon experience for many patients. At first, her shortness of breath, and coughing – which would eventually become intolerable – were attributed to the renovations she was doing in her home. And because she had suffered from asthma in the past, it was a reasonable assumption that it was to blame. Along with asthma, her doctor thought that she had GERD (gastroesophageal reflux disease) as well. So she visited an allergist. As happens with many yet-to-be-diagnosed patients, her doctor prescribed an inhaler, which did nothing to alleviate her symptoms. At this point, she was already advocating for herself, searching for more answers.
Next stop: an ENT (ear, nose, and throat doctor) who determined that Colleen’s symptoms were due to a vocal cord disorder, a diagnosis confirmed by a second ENT. At this point, no one had even suggested a chest x-ray. Within about ten days of receiving this diagnosis, Colleen began to cough up blood. She arrived in the emergency department of her local hospital at 2 a.m with a collapsed lung. By mid-morning the following day, Colleen had been told she had lung cancer.
Advocating for Herself
This was not Colleen’s first run-in with cancer. Fifteen years prior, at age 43, she had been diagnosed with breast cancer. Her mother, who had been a smoker, was diagnosed with lung cancer better than 20 years after her last cigarette. Having worked in big pharma for many years, Colleen knew that she had to advocate for herself. She knew what to ask for and requested genomic testing and information on clinical trials anywhere in the country. Despite not having the final biomarker results, her physician at Massachusetts General Hospital (MGH) suspected that Colleen was ALK+ and reported to her:
“I have a trial for you.”
Shortly before her scheduled trip to MGH, Colleen’s lung collapsed. The first thing the following morning, her husband and her brother, who is an EMT, drove her to Boston and she immediately began treatment: an oral targeted therapy which, seven years later, she is still on. Colleen is stable, the metastases in her brain are essentially gone, and she has no sign of disease in her spine or ribs. Doctors told her that she had a 67% response. Perhaps more impressive: the medication she was given in the clinical trial is now a first-line treatment for lung cancer patients. Research works. More impressive still: she continues to be a fierce and committed advocate.
A History of Speaking Up for Others
Shortly following her breast cancer diagnosis, Colleen left her career in big pharma to focus not only on her own recovery and health but to support her daughter, Taya, who was diagnosed with Asperger’s, a form of Autism Spectrum Disorder.
A strong and hard worker – Colleen is the oldest of nine children so she is naturally independent. She took a deep dive into learning what she could do to not only support her daughter but to serve as an advocate for her and other children like her. For more than a decade, Colleen has been an advocate for students in the public school system of Rochester, NY. She sat on advisory boards and worked tirelessly to speak for the children and their families, who needed extra support and an ally/advocate in order to be successful.
Advocate Mom Joins a NSCLC Advocacy Group
For the first ten months following her diagnosis, Colleen knew no one with lung cancer. Eventually, she found a group on Facebook – she was the 40th member. This NSCLC advocacy group has grown exponentially in the seven years since her diagnosis.
“I thought to myself, what are you going to do? I heard a cancer patient encourage others to not waste their cancer rather they should share their knowledge, experience, and strength to help others. I knew I wasn’t going to die today or tomorrow, but this insidious disease isn’t going anywhere. I have to do something, be an advocate.”
It wasn’t long after that that Colleen and seven other lung cancer patients (Laura Greco and Lysa Buonanno among them) started a grassroots organization: Life & Breath. Within weeks of their forming the group, they conceptualized, organized, and attended a rally in Washington, DC. Rally participants asked Congress to restore the $20 million for lung cancer research cut from the budget. A second rally took place a few months later.
Advocacy works. The effort to secure the $6 million increase in funding was because of the efforts of many people and groups. It took three years, but Colleen and these other lung cancer advocates were able to get Congress to increase in funding.
Growing the NSCLC Advocacy Group
In addition to this amazing accomplishment, Colleen has done extensive work with Genentech serving as a model and spokesperson in both print and video for newly diagnosed patients. Colleen also penned a welcome letter to accompany their first dose of medication. Colleen is also a consumer reviewer for the Department of Defense Lung Cancer Research, a position for which AJ Patel, another member of our Speaker’s Bureau served as her mentor. She recently stepped up her NSCLC advocacy work – becoming a board of directors member to continue the fight for more lung cancer research funding.
“I’ve done a lot of mentoring and advocacy over the years; first for Taya, and then for my fellow lung cancer patients. One thing I am sure of is the importance of hope. It is a large and important component of this disease. In fact, my husband Tom and I love to travel. We had planned a trip to several western national parks (Yellowstone, Grand Tetons, Glacier) for the fall of 2015. We postponed this trip following my diagnosis. And when we rescheduled it, I carried a sign that read: I am surviving with lung cancer. And I am. I’ve met so many wonderful people who have become dear friends. The heartache is when someone dies…but it also pushes you forward.”