Project LEAD workshop is over

So now I need to figure out what role I can play in helping to meet the deadline of January 1, 2020 for the eradication of breast cancer. Many advocates participate in reviewing studies to help determine which ones get funding through the Department of Defense breast cancer allocations. Some are meeting with scientists, researchers, and others to formulate the questions and craft the strategies that will change the way we approach breast cancer. Some write articles or summaries of research. Some lobby legislators for policies that help provide patients with better quality of care and help move the conversation forward. There are many ways to make a difference.

I'm going to rest for a few days before making any huge commitments, but I think my initial steps should be simply to pass on the information I've learned to people in my circles. I can do that here, and through Facebook, and through individual email and conversation. But I'm thinking a house party might be the most efficient way to really help show what the deadline is about, how we need to change the conversation, and what we can all do. Expect invitations in a few months!

Meanwhile, there are a few key points I'd like to share, and a couple of action items:

• Unfortunately, routine mammography screening does not save lives. We need something better; we deserve something better. For now, though, unless you're high risk, there's not much benefit to routine mammograms from 40 to 49 or once you're over 75. From 50 to 74, there may be some benefit. Personally, I'm not planning to have another one until I'm 50 unless I notice something suspicious.

So who's high risk? Someone who's already had breast cancer, of course, and anyone who's positive for either BRCA mutation. Also, someone with first-degree relatives with breast cancer, especially if they occurred at a young age. (So Sandy's sisters, for example, are considered high-risk.)

• The reason routine mammography screening does not save lives is because early detection doesn't save lives. We've all heard (and maybe said), "at least they caught it early," and intuitively thought that would make a difference. But the data shows, depressingly, that early detection has no effect on survival. What matters is the grade, phenotype, and histology of the tumor - whether it's likely to go rogue or not. 

When I look back at Sandy's initial pathology report, it's clear that the cancer was almost certain to recur, based on the grade and the Ki-67 value and a few other things. We could have hoped for a local recurrence (in her breast), but it didn't come back there - it hopped straight to lymph glands in other parts of her body, her adrenal gland, lungs, bones, and brain. The initial tumor was aggressive, and the chemo "tamed" it for a couple of years, but it followed the course the initial pathology report would have predicted. Finding it earlier wouldn't have made a difference; finding the metastases earlier probably wouldn't have made a difference.

• Most women overestimate their risk of developing breast cancer. The 1-in-8 statistic is a lifetime statistic, not your chances each year or each decade. Approximately 230,000 women in the U.S. are diagnosed with invasive breast cancer each year, and about 57,000 women are diagnosed with in situ breast cancer. That's 287,000 too many women having breast cancer each year, but the individual risk isn't as high as a lot of people think it is.

• Breakthroughs are possible. Herceptin provides an amazing story, as it changed the nature of treatment for women with Her2+ breast cancer -- it actually cut the rate of recurrence for those women by half. It has saved lives. One of the people who developed Herceptin has said that it became available to patients five years earlier than it would have because of National Breast Cancer Coalition advocates and the work NBCC did to push for accelerated FDA review. Five years = many lives saved, and I'm grateful to NBCC for that.

You can learn more about all of this stuff at the NBCC site KnowBreastCancer.org. Find out about the controversies and what the science shows us (and where the science just isn't there yet).


Okay, here's the action part - or, rather, two parts:

• Contact your representative and ask her or him to cosponsor the Accelerating the End of Breast Cancer Act, HR 3067, which has just been introduced in the House. The bill will establish a commission to focus on identifying methods to prevent breast cancer metastasis, and on identifying strategies for the primary prevention of breast cancer. 

Equality Day in Olympia 2006. You, too, can be political -
and I'm not even asking you to go to Olympia or D.C.
Just make a phone call, sign a petition - easy, right?

Legislative policy tip: You can track a federal bill and its cosponsors at Thomas.gov. Search for the bill by name or number, and then click to see the list of cosponsors. You can also see the text of the bill and track it as it moves through committees, etc.

• Sign the petition urging President Obama to sign on to support the 2020 deadline. You can sign the petition here.