Monday, June 4, 2012

If you haven't already, watch the PBS clip where I tell the story of meeting a woman who was spared my fate (late stage diagnosis) because she saw an episode of Oprah here (fast forward to 16:34).

Here is the whole text:

My name is Hallie Leighton. I am 41. My story was told in a CNN article called “When a Mammogram is Not Enough.” I was diagnosed with Stage IV breast cancer at age 39. Stage IV is the “Elizabeth Edwards” stage. It means that the cancer has spread to distant locations—in my case the spine--and is thus incurable. When physicians talk about patient anxiety from unnecessary breast biopsies, I want to tell you that it is nothing like  the anxiety of waiting for spine biopsy results because doctors suspect your cancer has spread, then getting the news that you tested positive for metastatic breast cancer. It's nothing like the anxiety that results from being told your cancer was there a year earlier and radiologists didn't spot it because of dense tissue.

Not long after my diagnosis, I was waiting to see my oncologist when I struck up a conversation with a woman my age whose cancer had been detected at an early stage. She told me her cancer had not been detected by mammogram, but by sonogram. I asked her how her doctor knew to order a sonogram. She said seen an episode of Oprah that said to ask your radiologist if you had dense breasts and to request a sonogram if you did.

This woman had been spared my fate, the clinical equivalent of death row, and all because she watched Oprah.

According to statistics, my chance of being alive in five years after initial diagnosis is one in six. I have three years left. It’s like Russian Roulette with five of six chambers loaded. I felt betrayed by my radiologist and my gynecologist for not telling me what Oprah told this woman, which is that if you have dense breasts, finding cancer on a mammogram is like spotting a polar bear in the snow.

A year before my diagnosis, in 2009, when I was 38, I had a mammogram, and received a letter that said “Dear Ms. Leighton, I am pleased to inform you that the results of your recent breast examination are normal.” My gynecologist also told me that my mammogram was normal. Only a year later, when I was diagnosed, did I see the 2009 mammogram report that was sent to my gynecologist and not shared with me. It said "The breasts are extremely dense, which lowers the sensitivity of mammography."
By how much does it lower the sensitivity? A traditional film mammogram, which I received, misses over 60% of cancers in dense breasts. “Normal” is not synonymous with unreadable.

According to analysis from the Institute for Health Quality and Ethics, which has filed a citizens petition on my behalf, approximately 10,000 lives could be saved every year in the United States by adding ultrasound screening for women with dense breasts.

I have heard several rationales for withholding this information from patients, but I haven’t heard any reasons as compelling as the reasons for communicating with patients.

When people talk about the insurance costs of unnecessary biopsies for false positives, I want to show them my medical bills, and I’m just one patient. What my disease has cost my insurance company could pay for thousands of biopsies.

But first and foremost, this is not about money, but about saving lives. I commend JoAnn Pushkin and Nancy Cappello and all the women at Are You Dense and Are You Dense Advocacy for the work they have done to educate women so they can be spared the nightmare of late stage diagnosis. I commend Julie Marron and the Institute for Health Quality and Ethics for the analysis they have done.

I want to thank all the legislators who support this bill. I want to especially thank Senator John Flanagan, Assemblywoman Ellen Jaffee, and all the sponsors of this bill.  You’re doing the right thing. This bill will save lives.

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