For most of her life, Kelly Rothe believed she was going to die of breast cancer.
"It's all we knew. When everyone in your life gets sick, you just assume it's going to happen to you," she says.
Rothe was just six years old when her mom was diagnosed.
Her mom was relatively young, just 38, but over time the cancer spread from her breasts to her liver, her brain, and so on, until she was too weak to drive Kelly and her younger brother and sister to school.
She died in 2002. Kelly Rothe was 10.
Then her aunt became sick. A few years later, she was gone, too.
So when Rothe was just 18 years old, she needed to know: would the same thing happen to her?
Genetic testing tells you if you're at risk, but not what to do about it
A few days after her 18th birthday, Rothe got the results of a genetic test designed to tell if a patient carries the gene mutation associated with a high risk of breast cancer.
The test was positive.
Sitting in the doctor’s office, she knew it meant a 40-80% lifetime risk of getting breast cancer.
“I cried,” Rothe said. “I had the teddy bear that my mom gave me when she was still alive. They recorded her voice singing my song, which is ‘You are my Sunshine.’ I had that, we call it my mommy bear, sitting on my lap. And I pressed the button and told the doctors, don’t laugh, but I need to hear this."
Here's where Rothe's story takes a turn.
She knew then and there that she wanted a double mastectomy, and not later, now.
At first, her doctors said no. She was way too young. The surgeon wouldn’t even see her.
"You’re not even at risk yet," they said. "Wait. When you’re 25, then we’ll start screening, we’ll start mammograms. Give yourself time to live a little bit more, find a partner if you want, maybe have kids, get the option of breastfeeding them."
But Rothe says it’s for her future kids that she wants to do this, so they will not have the childhood she had.
“Would I have them watch me go through this terrible surgery, and watch me recover from this and be afraid for my life? For me, I’d rather do formula than have them watch this happen, ” Rothe said.
Eventually, her doctors came around.
This generation of young women is different. So is their cancer.
Rothe is now 20 years old. According to her doctors, she’ll be one of the youngest women ever to get this procedure, at least in Michigan.
But she is also part of a growing trend.
Young women are getting advanced cancer more frequently today. We don't really know why.
Their survival rates are lower, too.
This means many oncologists, including those who treat Kelly Rothe, try to be very, very cautious in what they tell their patients.
Yes, they could have up to an 80% lifetime risk of breast cancer. But their risk could also be much lower.
“Because nobody can actually tell anybody an exact number. All we can do is tell you a range,” says Marjver. “Your risk may be between 40 and 85 percent.”
Things that can lower your risks, such as your other genes, lots of exercise, good diet, even breast feeding, Marjver says these can make a measurable difference, especially since women give up so much when they have a mastectomy. It's major surgery, with a painful recovery, no more feeling in their breasts, and they can’t breastfeed.
So for Kelly Rothe, will her life be better for having made this choice so young?
Dr. Marjver says that’s still to be seen.
“That is a very profound question. We don’t know, because that [life without an early mastectomy] is a life that is not lived,” Marjver said.
Rothe says she knows all about her full range of risk. But to her, losing her breasts is absolutely worth it.
“If you had a bomb strapped to your body, would you wait or would you try to dismantle it? That’s how I explain it, and it usually gets people on my side,” she says.
Rothe is scheduled to have a double mastectomy this spring.
Want to learn more? Check these out.
Bright Pink was founded by a young woman who, like Kelly Rothe, got a double mastectomy when she was very young - just 23. It's also got a quick survey you can take to figure out more about your own risk.
The Young Survival Coalition helps link survivors together and holds conferences for young women fighting breast cancer.
If you want to learn more about the 5-10% of cancer diagnoses that are linked to heredity, the University of Michigan Breast & Ovarian Risk and Evaluation program counsels and treats people who are at genetic risk of developing cancer.