Cracking open a mystery: Genealogist traces impact of cancer across generations

As a carrier of the BRCA1 gene mutation, Mica Anders knows what it's like to survive breast cancer. To lose a parent. To sit with a genetic counselor and discuss a family tree marked with cancer risk for her dad, sisters and cousins.

Anders wants to know more. So she is following a genealogical trail all the way back to the 1800s to understand how cancer affected her ancestors' lives. Through that research, she hopes to figure out who may have passed the BRCA1 gene mutation to her grandmother.

"It's been a crazy adventure, and I haven't solved it yet," said Anders, 39. "I haven't been able to get back as far as I want to."

Anders said it's very likely that her father's mother, Lucille, who worked as a domestic in rural Missouri and died in her 40s, carried the BRCA1 gene mutation. But Lucille's death certificate vaguely indicates that she died of heart problems.

"I thought this great revelation would come as I would get her death certificate, and it would answer all these questions," Anders said. "But it wasn't that simple, and so I've been on this hunt."

Chasing the untold story

Anders has made a career of unearthing forgotten history. Her work as a historian and genealogist specializing in African American genealogy takes her to elders' homes to find photos of notable women in the Rondo neighborhood of St. Paul, and deep into census records to learn about early Black settlers in southeast Minnesota.

"It's kind of like you don't exist if people don't know about you," said Anders, whose father was Black. "The dominant stories that get told are the same people over and over again. … It's so important that it be everybody's story."

Often wealthy or well-known families donate personal papers to historical societies, she said. Learning about everyone else requires more homework.

"Once you hit slavery, it becomes much more difficult to find any records," Anders said.

But she knows where to look for clues.

Cemeteries, for example, are providing some of the earliest records. A segregated cemetery where Lucille is buried in Missouri includes photographs and details online of every existing gravestone.

Another helpful resource is DNA. Families who were enslaved and separated can use DNA to link scattered relatives who now have different last names.

Some genealogy tools feature a chromosome browser. Knowing where the BRCA gene manifests on the genome, Anders can focus on that chromosome to search for matches with relatives.

"I've been homing in on my DNA matches to figure out who else has this chromosome. Who else do I share this specific little bit of genetic code with, to really try and figure out, where did it come from?" she said.

Looking for lost relatives

Anders' family remained in the same counties for generations before and after emancipation. To learn about them, Anders must search the records of their enslavers, checking archives and property deeds where enslaved people might have been named. Newspaper archives are helpful, chronicling events like marriages, deaths and a family house burning down.

Just like her clients', Anders' genealogy is full of surprises and brick walls. Some ancestors documented as parents may not actually be biological parents. Other ancestors went by nicknames like "Bud" or had common names like "Smith," complicating the work to verify identities.

Anders' father, Marvin, died of prostate cancer at age 66. Anders said it's likely that his mother, Lucille, had cancer and never knew it.

"I would put thousands of dollars on the fact that she died of cancer, just because of what we have seen come out of her line," Anders said.

Lucille may have received poor health care in a part of the state where schools and other services were segregated. Anders contrasts that with her own health care experience.

After her father and two of her sisters were diagnosed with cancer and one sister tested positive for the BRCA1 mutation, Anders pressed her insurance company to cover a genetic test that showed she was also a carrier.

Between biannual cancer screenings, Anders independently found a lump and was diagnosed with triple-negative breast cancer in 2015 at age 33. She underwent multiple surgeries and spent months traveling to the Mayo Clinic for chemo treatments. Today she is healthy.

"It's so important to know your family history, but I think also to not have shame if you don't," she said.

"It's OK to push to try and get those [genetic] tests. Make a difference for generations underneath you."

Michelle Bruch is a freelance writer based in the Twin Cities.