Why Advocating for Lung Cancer Research Matters
The lung cancer community boasts many strong, outspoken, and hard-working advocates. Of those who fight tirelessly for lung cancer awareness and the goal of a cure many were not advocates prior to their diagnoses. It was not until they received their diagnosis that they felt both a desire and a need to put themselves out there and be a part of the road to a cure. While each person has their own motivation for advocating, they all have the same goal: provide support, build awareness, and impart what they have experienced and learned on their lung cancer journey. Jeff Stibelman is one of those people.
It is not unusual for a lung cancer diagnosis to come as a shock. Often the disease is discovered by way of an incidental finding, or a strange and seemingly unrelated symptom; a sore elbow, back pain, or even no symptoms at all. The emotional toll of such an unexpected diagnosis only adds to the anxiety and fear of what lies ahead. For Jeff, that shock came not once, but twice.
From Diagnosis to Advocating for Lung Cancer Research
Like many people before him, Jeff’s first experience with cancer came out of nowhere. He woke up one day with a sudden, debilitating pain in his neck/shoulder. During a visit to the emergency room, radiologists discovered a mass resting on a nerve in his neck. At first, the mass was believed to be benign. In fact, he met with a surgeon to discuss removing the tumor and was dismissed. The surgeon told him that he was in the business of saving lives and did not have the time – or seemingly the inclination – to take on Jeff’s case. A few weeks later, a nurse observed the debilitating pain Jeff was suffering from and summoned the surgeon. Surgery was scheduled very soon after.
It turned out that the mass was indeed cancer and there was occlusion (blockage or closing off of a vessel) to his brain. The medical team was able to remove ¾ of the tumor, enough to test for any mutations. There were none. After following up with oral pain medication, physical therapy, and radiation treatment, the pain – and the disease – were gone. He continued with scans every three months and was, in his words, living life.
Soon after this ordeal, Covid-19 reared its head and the world came to a screeching halt. Having just endured a battle against cancer, Jeff took the precautions to isolate himself seriously. He reports that he didn’t leave the house, retired from his lifelong career in the garment business. In his words, “I sheltered in place big time.” So big time that he found himself, even years after the world had opened back up, seldom leaving the house. Jeff became a hermit which resulted in a big hit to his psychological well-being. It was a crash from the high of having beaten his first cancer diagnosis.
Personal Stories Drive Lung Cancer Research Advocacy
In early 2021, Jeff noticed he had a “little” cough. It was so minor he thought nothing of it. It wasn’t until a few months later, while playing on the floor with his grandson, that his cough was painful, but only on the right side.
He went to see his primary care physician who reported that everything sounded good but, just for the heck of it, ordered a chest x-ray. The x-ray was available a few floors down from where he was, so the doctor told him to come back up when he was done.
“I returned to the doctor’s office where a nurse immediately took me to a room. When the doctor came in, the look on his face told me everything. He pulled up the images and pointed out a large lesion on my lower right lobe. He was an old school doc with a big heart and he gently told me that it could be cancerous.”
Jeff was sent – stat – for both CT and PET scans. The CT scan showed that the nodule had grown significantly since 2017. This news came as a shock to Jeff: no one had ever told him there was a lesion in his chest. It had been noted in his charts during his first cancer diagnosis, but, for unknown reasons, was not reported. Had it been addressed in 2017, perhaps his diagnosis would have been less dire. Instead, Jeff was told that he had inoperable stage 4 lung cancer with metastases to his bones, ribs, clavicle, and brain.
“I could (and should) be enraged that this information was withheld. Instead, I opted to take that energy and concentrate on learning everything about everything: research, testing, biomarker testing. Because of that, I discovered that my lung cancer carries the EGFR+ mutation which allowed me to receive oral targeted therapy. They told me it would extend my life 6 months to a year. Without it, I had maybe 6 months. Without hesitation, I said I would take it.”
Like other patients, Jeff’s diagnosis lit a raging fire for advocacy. His goal is to share his not-so-uncommon story, encouraging, and imploring even, people to be proactive.
“If you think something is wrong, trust your gut, ask questions, and demand answers.”
Biomarker Testing: A Research Advocacy Success
“I don’t want my story to be about me, Jeff Stibelman. I want my story to be about focusing on the disease and the cure. It is because others before me advocated and made their needs heard that biomarker testing was discovered and, in turn, new highly effective drugs were developed. Getting more involved in research and doing my own research has become my purpose. Being there for people helps not only the patient, but me. If I can save a life, I am doing my job.”
I’m using my lungs to advocate
As a member of LCFA’s Speakers Bureau, I’m advocating for research and raising awareness through the media, embodying hope and action.
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