When Sandi Scheele and her daughter, Tiffany Manker, found out last year that Tiffany's younger sister Jennifer had stage 2 breast cancer, they were stunned.
Jenn's cancer was discovered by her husband as a lump on the Fourth of July, and Sandi says, it was aggressive. “On July 14th they did a biopsy, on the 17th they found out it was cancer, and by the 29th of July she had the double mastectomy.”
Jenn's treatment was also aggressive, and genetic testing eventually revealed the cancer was caused by a mutation in her BRCA-1 gene, and had been passed to her by either her mother or her father. Turns out, it was her mom, Sandi. She tested positive for the gene mutation, as did Tiffany.
General surgeon Dr. James Wolf says a mutation in the BRCA-1 gene affects women in a variety of serious ways. “The BRCA-1 patients have a marked increased in the risk of breast cancer and to some degree, ovarian cancer, " he says.
For the average, non-high-risk woman, the chance of developing breast cancer is about 12%. For women with Tiffany and Sandi’s gene mutation, that risk jumps to 80% or higher.
Sandi and Tiffany said their choices were to accept the genetic test results, meet often with their doctor, and deal with the cancer down the road if or when it developed. Or, they could be pro-active, and choose to fully remove both of their breasts, a procedure called a prophylactic bilateral mastectomy.
According to Dr. Wolf, “Prophylactic mastectomy is the most effective means of risk reduction for breast cancer, but it doesn't completely abolish the risk." It does have a pretty dramatic effect, though. After a bilateral mastectomy, that 80% chance of getting breast cancer plummets to 10% or less.
That huge drop in risk is what made the procedure almost a no-brainer for this mother and daughter. “After seeing what my sister had gone through there's no way I want to put my family through that,” says Tiffany, “or put myself through the things she went through."
So within weeks of each other, they each spent 8 hours in surgery, having their breasts removed. And another affirmation for Sandi in particular was what they found during her surgery that mammograms and MRI's hadn't. “They found out that I did have some clusters of cancer cells in one of my breasts. I don't know how soon that would have done anything, i don't know what would have happened, but they were there."
The choice is a difficult one, though, for most women with the BRCA-1 mutation, especially considering there is a chance they may never develop cancer.
Physically, losing both breasts in one fell swoop is tough for women who feel that's a big part of their identity as a woman. And it's an *especially hard choice for women who haven't yet had children, but want to, because some of these gene mutations also have to do with ovarian cancer. That’s why doctors say there are some very real decisions that have to be made with childbearing.
The downtime is also something to consider. If a woman chooses to do breast reconstruction after the mastectomy, their total recovery time can be close to a year. That’s the case for Tiffany and Sandi, who says, yes, “It's going to be a good year that we have not really been able to physically do things."
But what these women have done is become closer to one another through an experience that they never expected to have. “We share a lot, “ Sandi laughs, “…real personal things we share, and maybe we shouldn't be sharing, but we're able to because we've gone through the exact same things."
And it’s an experience they've never regretted - not even for a second. “You know,” says Tiffany, “my plan is to live to 100 like a couple of great grandmas.”
Sandi and Tiffany are both now working with a plastic surgeon to have their breasts reconstructed, a process that will take nearly a year.
And one last note about the BRCA-1 gene mutation: it is carried by - and can be passed on by - both women AND men, so Tiffany is planning to have her two sons screened for the mutation when they are a bit older.