Pictured above from left to right: Teri Woodhull, FORCE; Barb Kunz, genetic counselor, North Memorial Humphrey Cancer Center; Denise Blumberg-Tendle, Susan G. Komen Minnesota; Kristin Baker Niendorf, genetic counselor, University of Minnesota Health; Becky Lechner, Minnesota Ovarian Cancer Alliance. Not pictured: Kathleen Gavin, Minnesota Ovarian Cancer Alliance; Jane Korn, Minnesota Department of Health.
Bound by inherited genetics, women from breast and ovarian cancer advocacy groups and genetic counselors leverage their friendships for a message: Knowledge is power. Power leads to action. Action saves lives.
This was the idea: If your risk of breast and ovarian cancer increases with a BRCA1 or BRCA2 gene mutation, and genetic counseling could help save your life and the lives of your family members, why not get those with a vested interest—like genetic counselors and cancer advocacy groups—gathered and let the sparks fly?
And then tell everyone.
55 to 65 percent of women with a BRCA1 mutation, and 45 percent of women with a BRCA2 mutation, will develop breast cancer in their lifetime, compared with 12 percent of women in the general population.
39 percent of women with a BRCA1 mutation, and 11 to 17 percent of women with a BRCA2 mutation, will develop ovarian cancer in their lifetime, compared with 1.4 percent of women in the general population.
Enter the SuperYou public awareness campaign, brought forth by Dr. Jane Korn and our state’s new cancer plan (which has a hereditary cancer objective) and created by a Twin Cities “super group” of women devoted to helping families understand and survive hereditary cancers. They include Korn, who is medical director of the Health Promotion and Chronic Disease Division at the Minnesota Department of Health, two genetic counselors, directors from Susan G. Komen Minnesota and the Minnesota Ovarian Cancer Alliance (MOCA), and the state outreach coordinator for the national hereditary breast and ovarian cancer advocacy group FORCE.
They’re harnessing the power of their relationships used to fight cancers related to the same gene mutation that affects related family members.
“The intention is to increase awareness and action around hereditary breast and ovarian cancer among people at elevated risk,” Korn says. “With little or no money, the idea was to leverage opportunities through our respective organizations.”
It didn’t take much for Korn to woo the others—if anyone could commit to raising awareness and minimizing barriers to genetic counseling, it was these committed professionals. The message, they decided, was not “get genetic testing.” Says Barb Kunz of the North Memorial Humphrey Cancer Genetics Program, “The message is, ‘Learn enough to make a decision. Get genetic counseling.’”
Because the first task, says this tight-knit group, is to inform, as even knowledge can be a complicated issue. “It’s personal. There may have already been a diagnosis in the family,” says Kathleen Gavin, executive director of the Minnesota Ovarian Cancer Alliance. “The thought is, ‘If I knew, it would increase my anxiety.’ The worry is, ‘I’m the next one.’”
But for those with a family history of breast or ovarian cancer, genetic counseling creates in you the power to make informed decisions to protect you and your family. That doesn’t necessarily mean removing breasts. It can mean frequent monitoring for cancer and other risk-reducing strategies, as well as encouraging family members to receive genetic counseling.
“Uncovering your risk is a complicated process,” says Kristin Baker Niendorf, program manager and genetic counselor with the University of Minnesota Health Cancer Risk Management Program. It’s one genetic counselors navigate. “It’s easy to say, ‘You have this gene and now you should have your breasts removed.’ What’s not easy is to say, ‘You need someone to order the right test, understand the test results, and be knowledgeable about the complicated medical management.’”
Thankfully, it’s easy to make an appointment. The SuperYou campaign has made sure of it. A list of sites with genetic counselors in the state is on the website. And a checklist makes it easy to decide if you need an appointment.
If you do, you should. If not for yourself, then for your family. “If you know you are at some risk, then your kids are potentially at risk. Counseling could help your family,” says Denise Blumberg-Tendle, director of mission initiatives for Susan G. Komen Minnesota. Says Kunz, “We want you to be empowered. You can actually look your family history of cancer in the face. It takes courage, but there is something good that can come of it.”
Are You at Risk for Hereditary Breast or Ovarian Cancer?
The SuperYou campaign says any one of these boxes justifies a visit with a genetic counselor.
If you or a close family member has had:
Ovarian, fallopian tube, or peritoneal cancer at any age
Breast cancer at age 50 or younger
Breast or ovarian cancer and your family has Ashkenazi Jewish ancestry
Two separate primary breast cancers at any age
A “triple negative” breast cancer at age 60 or younger (triple negative breast cancers are negative for ER, PR, Her2)
Both breast and ovarian cancer
Male breast cancer at any age
A known BRCA1 or BRCA2 gene mutation
If there is a pattern on the same side of the family of:
Two breast cancers, with one before age 50
Three or more breast cancers at any age
A breast cancer and then a close relative with either pancreatic or an aggressive prostate cancer (especially if diagnosed at an early age)
For a list of genetic counselor sites, visit superyou-mn.org.