Metastatic visibility

I met some amazing women living with metastatic disease this weekend. Like Sandy, they quickly became aware that metastatic breast cancer is a completely different experience than stage I or II. But only metastatic women and those closest to them seem to understand that.

When we first learned of Sandy's metastases, I went searching for resources. Overwhelmingly, what I found in the media, in widely available books, and in literature from the top breast cancer charities was discussion of breast cancer as if the greatest harms it caused were the loss of a breast, the loss of hair, some nausea during a short-term treatment. People laud survivors of the disease, emphasizing women who have lived one, three, five, fifteen, or thirty years past diagnosis, as if their survival exhibits progress -- or is due to their personal strength and resilience. We want to see success stories. We want pink ribbons and fluffy bunnies.

Here's the hard, cold truth: what makes breast cancer truly scary is that it kills women (and some men). The lump in a breast is not itself deadly. It's the spread of breast cancer into organs whose functions we require -  lungs, liver, brain - that leads to death. Whether a specific person's cancer will lead to death is a crap shoot, luck of the draw.

We know a little about the likelihood of recurrence based on the aggressiveness of the initial tumor, but even then, we do not know what causes some cancers to metastasize and some to hang out harmlessly. So we treat everyone who has any form of breast cancer, resulting in overtreatment -- and the mortality rate has not gone down.

I keep harping on this because we need to change the way we think and talk about breast cancer. We're putting our collective energy into 3-day walkathons, mammogram promotion, and pink-ribbon projects -- and those are not saving any lives. We need to put that energy into demanding resources for well-thought-out research that leads to successful, meaningful clinical applications. We need to channel that energy into political pressure to make the eradication of breast cancer a national priority. And those who have a scientific background need to actively challenge the research assumptions, help develop the appropriate research questions, and get some answers.

A strong (and somewhat silly) woman in her own right

Sandy was adamant that I not allow anyone to write about her that she had "lost a courageous battle" against cancer. Having cancer did not make her courageous. It made her scared. And yes, she was willing to do some frightening and painful things in order to live. But she didn't want to glorify the cancer experience. It was not an experience she welcomed or embraced, and it was not what she wanted to be remembered for. She didn't want "cancer patient" to become her identity. While "caregiver" became central to mine, she was a bread baker, hiker, woodworker, vidder, writer, political activist, cynic, cyclist, friend, partner, reader, and more. She didn't give in to the cancer, but it still killed her. That's what metastatic disease does. The majority of women with metastatic disease, no matter how brave, no matter how strong, no matter how determined or how long their bucket list, will die within a few years of diagnosis. That's why this is an urgent issue.

When you see a story on breast cancer, note who it talks about. Is the focus on women who've survived stage 1 or 2 cancers, or is it on women living with metastatic disease? Are fundraising efforts going to help more women get routine mammograms (which don't save lives) or to fund critical research (which might)? Is an "awareness" campaign telling women to get screened, or is it promoting the understanding that we urgently need to make eradicating breast cancer a national priority?

Everyone who participates in an event or buys a pink-ribbon postage stamp wants to help. Let's put all that goodwill to effective use. Please help change the conversation to one that demands real action!