Archive for December, 2010

Katie Brown

Elizabeth Edwards LIVED with cancer, until she died.

December 8th, 2010 - by Katie Brown

By Katie Brown

I hate hearing the words, “Elizabeth Edwards lost her battle with cancer…” as if the battle with cancer is in any way a fair fight.

In the end, she won. Cancer could no longer invade her body, cause her discomfort or pain.

I’d much rather hear the words, “Elizabeth Edwards LIVED with cancer, until she died.”

I had written a crafted piece yesterday to honor the life and impact of Elizabeth Edwards when the news broke that Ms. Edwards had died. The news came rather suddenly in my opinion, less than 24 hours after the announcement that her cancer had spread to her liver and that she would forego any further treatments. I was shocked by the news of her death to say the least.

I hit the delete button on my original article.

My intention now is to write more about what it means to me, as a cancer survivor and patient advocate, to have met Ms. Edwards, hear her speak and be directly impacted by her personal experiences. I am one of thousands who can say that Elizabeth Edwards left her footprint on their life.

Elizabeth Edwards showed the world what it was like to LIVE with cancer, be resilient, have faith and hold tightly onto hope.

In 2006 I was an inexperienced advocate. I was still actively mourning the loss of my father to lung cancer and had started working in non-profit to make a change against this deadly killer. I was invited to attend the inaugural LIVEstrong Summit for cancer advocacy. Elizabeth Edwards was one of the speakers.

I didn’t even recognize her until she was introduced. I didn’t know her cancer story until then either. She looked me directly in the eye (along with about 100 other advocates) and opened her heart. There wasn’t a dry eye in that conference room.

I only met Ms. Edwards twice and I had seen her speak only a handful of times. Each time she thanked me (and dozens of other advocates) for what we were doing for the cancer community. She made me feel like what I was doing was important. She gave me quiet strength to forge ahead and laid upon me the responsibility and duty we had to clear the path for others who come behind us in the cancer journey.

Eventually my experiences with her and other cancer advocates gave me the courage to call myself a survivor too. I had been diagnosed with cervical cancer at the age of 22 and after surgery I choose never to think about it or talk about it again. The 3 month scans turned into yearly scans and the anxiety lessened as each year passed.

It wasn’t until I became a caregiver to my father that I really examined what it was like to be a survivor.

I realized that I was a survivor too.

I had survived my cancer and I had survived being a caregiver. And thanks in part to Elizabeth Edwards, I knew I had to talk about it. I realized the importance of my story and how to share it and use it to effect changes and raise awareness.

I had originally written about her “resilience” yesterday. I had written about how grace and faith accompanied her thru her life’s trials – like the tremendous pain over the loss of a child, the humiliation and betrayal of her husband, the scrutiny and judgements she faced throughout her public life and how she managed to always overcome and rise above and inspire us.

Now, I’m just writing this open letter of thanks to the Edwards family.

Thank you for sharing a part of her with the rest of us. Thank you for lending us some of her time. Thank you for letting us get to know her heart and know that she continues to live on in so many ways and in so many of the lives she touched and continues to touch.

Rest in peace Elizabeth Edwards.

It was an honor to share my survivorship with you.

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Jerry Sorkin

The National Lung Screening Trial

December 6th, 2010 - by Jerry Sorkin

I am very fortunate to be able to write this post. In 2007, I was diagnosed with Stage IV lung cancer. Most lung cancer patients die within the year following their diagnosis. At the time I was diagnosed, I was 42, a healthy father of two young girls, and I had never smoked. Since then, I have had more than forty rounds of chemotherapy and two gamma knife procedures. I am lucky because my disease has remained stable and I have enjoyed an excellent quality of life.

Few lung cancer patients share my good fortune. Lung cancer is our nation’s number one cancer killer – and we have made little progress in reducing mortality rates in the four decades since the war on cancer was first declared. We have made little progress because the funding and pace of lung cancer research is far too slow. If we are going to catch-up with this disease and help save the 160,000 Americans who die from it every year, our nation must support bold and aggressive lung cancer research.

The recently announced National Lung Screening Trial (NLST) found 20 percent fewer lung cancer deaths among participants screened with low-dose spiral CT than among those screened with a standard chest X-ray. The NLST is a fantastic example of the life-saving capability of scientific research and technological advances. But those of us fighting to slow and stop a disease that now kills more Americans than any other cancer find it hard to be patient and cheered by confirmation of what we already suspected was highly effective.

My personal experience is illustrative. I had a full physical with multiple chest x-rays, showing no evidence of disease, just a few months before a CT scan showed that I had metastatic lung cancer with nodules throughout my chest. I did not need the NLST trial to prove that CT scans were more effective than x-rays. Neither did most physicians. Chest X-rays can only detect tumors one to two centimeters in size, while CT scans can detect tumors far smaller. CT scans are obviously better diagnostic tools than x-rays – but they have downsides – additional radiation and more false positives.

Our government spent more than $250 million on the eight year NLST study. And while we waited for the results of NLST we lost 1.5 million Americans to lung cancer. How many lives could have been saved if we had embraced CT scans rather than studying them? How many more lives could be saved if we dedicated the $250 million to developing better diagnostics and treatments?

Our science needs to move beyond the obvious to take lung cancer detection and treatment to the next level. One area where those breakthroughs are most likely is in the area of biomarkers, which hold the key to better diagnostics and treatment. Research should focus on the next generation of detection tools like blood sampling or sputum tests that could replace invasive lung biopsies. Scientists could identify therapeutic agents that provide customized genetic intervention for lung cancer, in order to extend patients’ lives and improve quality-of-life post-diagnosis.

Scientific research is vital to making life-saving advancements, but funding pools are critically low and the pace of research is slow. Over 200,000 Americans are diagnosed with lung cancer every year, which means each of us, or someone we love, will likely be affected. Our nation must commit to supporting critical lung cancer research. Going forward, our government and scientific organizations must move more aggressively – not merely confirming what we already know.

We must move quickly because millions of lives are at stake.

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Posted in Lung Cancer, Research | 7 Comments »