"Being metastatic is just awful luck, not something a person did or didn't do" -- and 9 other things the MBC community wants you to know.
If you're like me, you like concrete how-tos, clear directions, tried and true recipes, do this not that, that sort of thing. There is nothing so frustrating as wanting a map of a new place and not having one. That's how I have felt the last several years when it comes to breast cancer awareness and Metastatic Breast Cancer. I want to know specifically how to be a good friend to those with MBC.
Lacking the map, I've decided to simply ask. So, recently I've spent a lot of time talking to women with MBC, asking how I -- an early stager -- can support & advocate for women in the breast cancer community whom have been diagnosed Stage IV. The women I talked to were very happy to help me and now I have for you (and me) this list.
1. Being metastatic is just awful luck, not something a person did or didn't do. Many are diagnosed de novo metastatic, before they even knew that was a thing.
2. People with Stage IV are mentally in a different space than early stagers. "If I seem insensitive to an early stager's experience, it's because I'm over here preparing my young children for my death. While an early stager puts treatment behind them, I'm pleading for my treatment to just last another 6 months. And while an early stager is posting all about how hard of a year they've had, but then it's over and everyone is dressing in pink and dropping off casseroles and walking in their honor on Mother's Day, I'm over here drowning. All of my old friends have forgotten me, all of my metastatic friends who "get it" have died. And no one has brought me a casserole or asked how I'm doing in months."
3. Don't buy people with MBC pink stuff. Most don't identify with the "pink" crowd. Instead, spread awareness for Stage IV and the fact that 113 with MBC die each day.
4. MBCers are in treatment forever, until there are no more treatments. "I have a very good friend that had Stage II breast cancer that is always asking if this is the last treatment for me. I want to scream, I just told you three weeks ago that I would have treatment indefinitely!"
5. MBC is very isolating. Check in with your MBC friends, even if they are "just" online friends. "I don't know how many times I've cried because I feel so alone or like people don't care. Watching Stage I-III women get this out pouring of support makes me wonder if I just have the wrong friends."
6. The median life expectancy with MBC is 3 years, but appears to be improving due to research. "Know most stats are from awhile back and more and more of us are living with MBC, so we're in a gray area that's yet to be determined."
7. Get past the pink hype and focus on research. "You do not need to donate money (although the cost of a latte given to METAvivor is always welcome!) but instead call your member of congress to increase NIH funding, or tell them NOT repeal the ACA but rather work to improve it, or pass legislation to rein in outrageous drug costs."
8. Understand how frustrating it it is for those with MBC to hear about people who are "cured" of their breast cancer. "The threat is not currently present and I hope it will never return, but people who put their heads in the sand and act like MBC will never happen to them are my pet peeve. Don't get me wrong, I HOPE that no one else ever has to deal with this awful disease, but don't think just because "they caught it early" you don't have to worry anymore. Always keep up treatment and regular checks."
9. Stage IV means constantly grieving: for themselves & for their friends with MBC.
10. Follow organizations like MET UP and METAvivor and MBCN, as well as individual advocates who are active on social media. "Retweet our tweets; share our posts. Hear our stories!"
Words by April Johnson Stearns, Founder, Editor & Survivor behind WILDFIRE Magazine, a magazine specifically for young survivors and fighters of breast cancer. Get the current issue here.