Komen Advocate in Science Missy Van Lokeren was diagnosed with stage 1 invasive lobular breast cancer in 2014. After undergoing a double mastectomy and hysterectomy, she resumed normal life with her husband and two sons. Three years later, when Missy, then 49, experienced shortness of breath while on a family trip to Hawaii, her doctor ordered a CT scan as a precaution. The scans revealed metastases in her liver.
“When I heard about an MBC Steering Committee being formed at Komen, I thought to myself, ‘This is the group that needs support. This is the group that needs to know that there’s hope and there’s research being done so they can live.’ With my original breast cancer, I thought, ‘Oh, that’s in my rearview mirror.’ You get the surgery, you take your pills and you go on with your life. But when you get metastases, it just shakes your world. It stops everything.”
Telling her sons that MBC is a terminal diagnosis was the hardest part, Missy said. “To this day, I’m not sure if it was the right thing to do, because they were really upset when I said that. But I also said, ‘There could be a cure down the road, and we’re very hopeful.’”
Missy’s hope for a cure spurred her to pursue patient advocacy work, including lobbying on Capitol Hill for improved public policy for those living with MBC. She also teamed up to fundraise for MBC research with fellow committee member Pam Kohl, who founded Komen’s MBC Collaborative Research Initiative. The first-of-its-kind collaborative effort unites leading researchers at Duke Cancer Institute and UNC Lineberger Comprehensive Cancer Center to find breakthrough discoveries for MBC.
“I started supporting that initiative and pursuing fundraising with my friends so we could get the money researchers need to come up with some advancement in this metastatic world that we’re all living in – where there is no hope right now, or very little hope. It was important for me to be involved in supporting research because I wanted to be true to my kids and say, ‘I believe we can find a cure,’ or at least a way so we can all live a long life.”
In her role on the committee, Missy hopes to continue advocating for increased funding for MBC research, as well as developing more support groups for people living with MBC.
“We need money and more time and energy going into what could really help find the next big treatment – the next big breakthrough for MBC. It’s also important to offer some kind of support to people throughout the country who are dealing with this. When you talk to other people who are going through it, it really does make a difference,” Missy said.
“Building a support group is important to be able to stay strong and do what you need to do to fight MBC, which is not an easy thing. The treatments are not easy; it’s not fun. Knowing that Susan G. Komen realizes that MBC is the cancer that kills and that we need to put more effort into finding a cure means I’m willing to give my support in any way I can.”
Learn more about the MBC Steering Committee and meet the members here.
Statements and opinions expressed are that of the individual and do not express the views or opinions of Susan G. Komen. This information is being provided for educational purposes only and is not to be construed as medical advice. Persons with breast cancer should consult their healthcare provider with specific questions or concerns about their treatment.