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Mr. Jim Pantelas.
I was 26 years old when I lost my father to small cell lung cancer. His diagnosis came just 7 days before his death. He had a fast and very painful death, and the hole he left in my life was enormous. Decades later - and my wife 6½ months pregnant with our first child - I too was diagnosed with lung cancer. I was initially diagnosed with a 3-cm tumor localized in the right lung, and the prognosis looked good. I would undergo a lobectomy followed by chemotherapy as insurance. I entered the operating room at Stage 1B and exited minus 75% of my right lung and was re-staged at Stage 3B with Stage 4 lymph node involvement. With this new knowledge, my oncologist recommended a more aggressive treatment approach that included a significantly changed chemo regimen as well as radiation treatments- both of which would run for months, not the few weeks we previously thought.
That was almost 10 years ago. Our daughter, Stella, will turn 10 in November, and she now has two little sisters - Grace, 7, and Leda, 5 - and I remain cancer-free. That is not to imply that cancer is forgotten, or that I am healed of its effects. Like so many survivors, I still get winded easily, have developed COPD, and every winter I worry because simple sinus infections have a way of turning into pneumonia. Lung cancer has a way of changing not only your perspective-it changes the entirety of your life. You learn quickly that each minute is precious, that every hug is to be enjoyed, and every breath is an "extra" in the overall scope of life.
That new perspective can also lead to a wish to do something significant with the time you've been given. For me, that manifested in a desire to do what I can to change the experience of lung cancer for others-to do what I can to confront the stigma associated with the disease, to help people to be more aware of the disease, and to help to find treatments that can result in greater survivability and ultimately a cure for lung cancer.
I became involved in research advocacy, peer review, and research oversight. In my home state of Michigan I sit on multiple oncology-oriented institutional review boards (IRBs) for cancer research involving human subjects. After getting involved locally, I began hearing of opportunities nationally. This led to my involvement as a research advocate for two non-profits, Free to Breathe and The Lung Cancer Alliance, and later to my involvement with two federally funded programs: PCORI (Patient-Centered Outcomes Research Institute) and the Lung Cancer Research Program (LCRP) under the umbrella of the DoD's Congressionally Directed Medical Research Programs.
My involvement with the LCRP peer review program has taught me a lot about how research gets funded and about where lung cancer research is headed. The talent, experience, and enthusiasm of the clinicians on the panel is impressive. I find my insights as a lung cancer patient to be both welcomed by the panel and helpful in our deliberation of the study abstracts we are reviewing. My involvement with the LCRP is of great personal value to me.
As the son of a father who died from lung cancer, as a survivor of lung cancer, and as the dad to three young daughters, my efforts with peer review are a means toward ensuring that my daughters will not have to share my experience with lung cancer. I don't know if we can ever eradicate the disease, but we are changing how we diagnose it, how we treat it, and our ability to survive it.
Historically, much of the research for lung cancer has been secondary: drugs and treatments found effective with other cancers were translated to tests on lung cancer. Why? Because other cancers have done a better job of getting their stories out there; they found ways of making their research cause fundable. Everyone knows when it's breast cancer month, and we all know that after a certain age we need to have a colonoscopy. That has not been the case with lung cancer, but that IS changing.
For the first time, we can look at more than just prevention when we look at lung cancer. We can now look at realistic early detection, treatments that allow patients to live lives of quality with the disease, and, hopefully, we may soon be looking at long-term cures. But the only way to get to that day is through more research. LCRP is an important part of those ongoing research efforts.
As the number of lung cancer survivors grows, it is important to note that we are also a growing voice in support of research and research funding. We have been too few, too invisible, and too quiet for all too long. It's time to be heard, and getting involved in programs like LCRP is a way to do just that.
Last updated Wednesday, January 27, 2016