A random thought... that led me down the rabbit hole
I often share random thoughts that come to me on social media. Typically, these thoughts or questions are things that have been simmering beneath the surface of my life but I don't bother them. Every so often, one of those deeper thoughts will bubble up to the surface of my conscious and just sit there. It usually feels like its demanding an answer but sometimes I guess it just wants some light and air... just to be noticed.
Cleaning up the kitchen one night, I was thinking about some of the really brave and transparent pink ribbon sisters I know (or follow on social media) who are fighting metastatic breast cancer. Their stories about this part of their journey with breast cancer are breathtakingly raw. Now that my active treatment for breast cancer is over, reading other stories keeps me grounded in my advocacy.
Realizing that I didn't recall any stories of black metastatic survivors actually made me feel badly for a moment. I felt like perhaps I was letting my sisters down by not plugging in to stories of black women with metastatic breast cancer.
When I got back to my computer, I did a google search for metastatic black women... and I came up with a lot of links to stories and articles about the higher rate of deaths of black women from breast cancer. But I didn't find a personal story or link to a sister who was living with metastatic breast cancer.
So I'm wondering... where are my sisters?
Black women have a higher rate of mortality from breast cancer. Unless I'm not clearly understanding how a person transitions from breast cancer, I think that means that black women are more likely to have advanced stage or metastatic breast cancer. So where are those images, those stories? The women that I follow online and have met in person, have been fighting their stage IV cancer for a number of years. Is the lack of images and stories of black women fighting metastatic breast cancer because we transition faster, or we're more private?
There is a difference between "house" business and "street" business
It is a cultural taboo for black people to speak publicly about some personal issues. Health issues, especially health issues that strike women primarily, are one of those things that we typically don't talk about to others. We're changing that taboo slowly but surely... but I wonder whether that long-standing tradition to "keep house business private" is keeping some of our metastatic sisters from feeling comfortable sharing their story with the world.
Don't get me wrong... I am proud of the many black women I see regularly and know personally who are sharing their stories of surviving breast cancer. I had the fortunate blessing of participating in a wonderful breast cancer promotion with several fabulous and fascinating black breast cancer survivors recently. I think the work we did that day creating beautiful and heartfelt videos sharing our stories of our journey and our survival was beyond great.
We have to talk about metastatic breast cancer too
But... as many of my white metastatic sisters have taught me, there is more than one narration to this story about breast cancer. Yes, we all fight and we all struggle to win against this disease that takes so much from so many of us. And yes, breast cancer is more treatable today than it has been in years past. But that treatable portion of the conversation only applies to those of us who are diagnosed stage 0 through stage 3. The earlier that breast cancer is identified and diagnosed, the more likely that it will be treatable. We aren't talking enough about stage 4, metastatic breast cancer. And those stories are valid and necessary for all of us to understand. Everyone doesn't survive breast cancer and then shoot off to run marathons and open non-profits. That's just not the reality of all of my pink ribbon sisters.
So I return to the top of the rabbit hole. If black women are more likely to die from breast cancer, that means that there have to be black women in the world who are metastatic. Can anyone tell me where I can find those sisters and learn their stories?
Breast cancer does affect different races and cultures in different ways. Black women are more likely to have very aggressive and hard to treat/stop breast cancer. We are more likely to have triple negative breast cancer (the most aggressive subtype of breast cancer). We are also more likely to be diagnosed at a later stage than our white sisters, which also leads to difficulty in treatment. The disparity is real. Black women are not diagnosed at the same rate as white women, so I do understand why their are more images and stories of white women with breast cancer in general and metastatic breast cancer specifically.
I'm just wondering where my black metastatic sisters are. I want to see their faces and learn their stories too. Am I wrong for thinking this way?
For more information, please check out these links.
See: Black women have a higher risk of dying of breast cancer
See: Why black women die of breast cancer
See: Understanding Triple Negative Breast Cancer
See: The Unique Perspective of Illness Among Women With Metastatic Breast Cancer According to Race and Income
