November 20, 2009

Young Women and The Breast Cancer Guidelines

pink-house

I’m disturbed that in recent conversation about breast cancer guidelines, I’ve not heard anybody asking the question: ‘What is the most effective way to lower breast cancer mortality rates in young women?’

Prior to this announcement, I’ve spoken with staffers from key organizations serving young women with BC (breast cancer). They told me they’ve never seen studies on whether breast self exams (BSE) lower mortality rates in young women. I’ve read articles in which policy analysts and scientists agree this needs to be studied.

Cancer is terrifying and it is down right frightening to have BSEs diminished as a guideline when they are the one thing we have come to think of as a hopeful solution for young women.  But instead of defending a tool about which we have little scientific information, why don’t we get motivated about researching what will save our lives?

I’ve heard tons of stories over the years about young women who’ve found their BC themselves and use this as justification in favor of BSE.  We do know that across every age group the majority of BC is first found by women touching their own bodies accidentally or intentionally.  Nobody is debating this fact.  However there is a world of difference between the two questions of: “Do women find lumps when they do BSE?” and “Does doing BSE lower the mortality rate in young women age 15-39?”

Stories are motivation to find answers, but they are not the answers themselves.  The reason we draft legislation and raise money with walk-a-thons and pink ribbons is to fund smart science to help us make the most effective choices about preventing, detecting, and treating BC in young women. I wish the $45 million in Representative Wasserman’s EARLY ACT was directed towards investigating how to best lower mortality rates in young women with BC.  Show me a piece of evidence saying that BSE in young adults lowers the mortality rates of 15 – 39 year olds, and that the benefits of this outweigh the harms, and I think we will have hit the jackpot on what we need to do to take care of our generation.  Until then, as a community we need to demand that young women be taken seriously, and that government dollars be spent on researching our diseases so we can find  the most EFFECTIVE ways to save lives.

Cathy Bueti, a breast cancer survivor and author of Breastless in the City says:

“Although I found my lump it was not from doing a monthly BSE.  I never consistently did them.  Even today I only get thorough breast exams  when I see my doctors twice a year.    If I did BSE I would be on the phone every month in a panic with the doctor.  Young adults have crazy hormones that can cause frequent changes in breast tissue.  BSE can lead to unnecessary biopsy and is not going to increase survival rates in young adults.  I was told the lump I found most likely was growing for 10 years so it did not ensure early detection in my case.  However, I do believe it is important to stay familiar with your breasts so if you do find something that was never there before you can followup on it.”

As patients it is our obligation to know about breast cancer guidelines from scientific perspectives in addition to our own stories.  Here are some important links.  Read up!

U.S. Preventative Services Task Force (USPSTF) -  These are the folks who issued the guidelines and this link has their research and rationale.

National Breast Cancer Coalition Fund - These folks are an umbrella organization for a lot of other familiar cancer organizations.  This link takes you to a page where they discuss the needs and concerns about young women and breast cancer funding, research, and prevention.

Breast Cancer Action - These are some of the coolest gals in the breast cancer world.  This link talks about their take on mammograms in women age 40-49.  Yep, some of us in the YA cancer community are getting close 40!

Let me know what you think about whether young women’s voices have been included in this conversation.  Do you think we can move beyond anecdotal stories about young women with breast cancer and start investing in evidence based studies about how to reduce our mortality rates?

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