Talking about stage: A Q&A with Briana Sykes and Sasha Milicevic
The way people describe a breast cancer experience often differs depending on the stage of cancer under discussion. When it comes to early-stage disease, battle and victory language is prominent: people say things like “fight the fight” and “win the war.” But when it comes to stage IV, metastatic breast cancer, those words can take on a different tone and leave people living with the disease feeling left out or alone. The Facebook group MBC Advocacy and Support — open to all stages and allies! was founded with the goal of improving communication between those diagnosed with early-stage and metastatic disease so that everyone can “work together to improve and extend the lives of people with MBC.”
Nicole Baxter, MA, interviewed Briana Sykes and Sasha Milicevic about bridging the gap. Sasha is a co-founder of the Facebook group with Beth Caldwell, a graduate of LBBC's Hear My Voice Metastatic Advocacy program who died in 2017. Sasha was treated for early-stage disease 5 years ago. The group now has 2,200 members.
Briana is a fellow graduate of Hear My Voice, who contributed to this content before she died in September 2019. We continue to share it so that Briana's legacy lives on.
Describe the tension between “metsters” and “early-stagers.” Why is this an important issue?
Some people with metastatic breast cancer feel ghosted by those with early-stage disease. I have noticed this when someone with early-stage is done with their treatment. They want to move on with their lives and celebrate their survivorship. There are all kinds of events and rallies celebrating their fight with no mention of those of us who are dying.
I have [also] heard that those with early-stage find those with metastatic disease scary, [because] it is their worst nightmare. I recently spoke with an organization that developed a support group that was mainly early-stage. They admitted that the group doesn’t have any metastatic men or women in it and [that] they realize they offer minimal support to those with metastatic disease. The director of the organization told me,
“[the people with MBC] make everyone uncomfortable, but we can’t kick them out.” It just seems like there is less support for those of us with metastatic disease, [and] it infuriates us because we want to live and we need help. Sometimes that may come off as angry or bitter, but can you blame us?
Briana touched upon quite a few things. Most oncologists don’t tell early-stagers that 1 in 3 will eventually develop metastatic disease. They emphasize high survival rates and low mortality. If your doctor is telling you that your chances of recurrence (let alone metastases) are low, other patients contradicting that can indeed come off as scary, negative or bitter. What many of my early-stage sisters don’t understand is that those women [already diagnosed with MBC] are providing us with knowledge that we need. It is unsettling to hear that 1 in 3 early-stagers will develop mets and that nothing you do changes your odds. It is a scary notion to adjust to because we want to be in control, but once you accept it you can actually start working on making a difference.
What would you like to see people from these stages doing differently when they interact with each other?
I do think that sometimes those of us who are metastatic are hard on early-stagers. I knew nothing about metastatic breast cancer before it happened to me, and not all doctors [educate] their patients on the statistics of becoming metastatic or what that means. I remember when I wasn’t staged yet I wasn’t willing to look up what stage IV meant, because clearly that wasn’t going to happen to me and I didn’t want to know. I think we need to give early-stagers a little more grace and be willing to educate them, and hope that when they know more they will be willing to fight for us, too. Support research! Make sure we are not ignored.
At this point I have quite a few friends from the MBC community, and I have never been met with anything but kindness and support [from them.] There are so few early-stagers advocating for the MBC community. My messages are mostly for women like me, early-stagers:
- Learn as much as you can about MBC. Knowledge is power and it can happen to you as well.
- Supporting our metster sisters means supporting ourselves because we don’t know what’s ahead of us. It’s entirely unfair to let metsters fight the fight [alone] when they most likely will not benefit, but we might.
- Most important: listen to what they have to say. Ask what you can do to help.
What’s the benefit of building a stronger, more unified breast cancer community?
We already know that the breast cancer community can raise big dollars. [But] in the past couple of decades that money has been devoted to early detection, awareness or other questionable ventures. Early detection and awareness don’t help people who are already metastatic. We are left in the dust. If we could just work together to make sure the money is going to research to save lives, it would benefit everyone. Call me selfish, but I would much rather donate for better treatment options to help people live longer than donate for a more comfortable mammography machine.
A stronger community can influence public policies and direct money where it is needed: toward finding the cure for metastatic breast cancer. A strong community can educate the public about important issues. There’s a lot that we can learn from the LGBT community and their struggle to redefine AIDS and fund research on HIV/AIDS.
A stronger community that includes not only [diagnosed] women but also women who never had breast cancer will emphasize that we are all in this together and that we can make a difference.