|be involved | January/February 2014
Knowledge brings empowerment and strength to healthcare journey
by Marnie Butcher Piehl
Marnie Butcher Piehl
Our mothers shape us. Their feelings, experiences and their genes make us who we are. Being a mother shapes us, too. We do things for our children that maybe we wouldn't do for ourselves alone.
For Mary Klecker Miller, her mother's battle with cancer and becoming a mother herself brought her to a decision that she might not have made otherwise. At age 35, she went through genetic testing, learned that she had the BRCA 1 gene and chose to have a double mastectomy and full hysterectomy.
The BRCA gene is an inherited trait that greatly increases the risk of breast and ovarian cancers. Women with the BRCA1 gene have a 65 percent risk, on average, of getting breast cancer. Family history makes that risk higher.
In addition to her mother, Miller's maternal grandmother battled -- and lost -- against breast cancer. Her paternal grandmother also died of cancer. That history along with the BRCA1 gene put her at an 87 percent risk of developing breast cancer. Her risk for ovarian cancer was at 40 percent.
"As my doctor said, 'It's not if, it's when,'" Miller said.
Miller remembers the moment she decided to look into genetic testing. "I knew that I needed to take charge of my health rather than wait for something to happen to me. Looking at other women fighting was the trigger for me."
Her son was the other factor. Divorced since Jack was 2, Miller says raising Jack is the single most important thing she'll ever do. "My biggest fear was leaving him," she said.
Her first step was an appointment with her family nurse practitioner at Mid Dakota Clinic, Dawn Loraas. Together they looked at Miller's family history, and decided that she should have the BRCA test.
Two weeks later, Loraas called Miller into the office. She had tested positive for the BRCA1 gene. "I had this sense that this is my reality; now I can do something about it."
The next step was to consult the team of potential surgeons who would perform the array of surgeries she'd need -- which, in addition to the mastectomy and hysterectomy, included reconstructive surgery.
"Every one of them said that if I was their wife or daughter, they'd recommend surgery. I was comforted by that. There was no doubt in my mind what to do; surveillance wasn't an option. I wanted to do something right away."
The most difficult decision was whether or not to do the hysterectomy. As a young woman facing surgical menopause, she questioned how that and the mastectomy would affect her as a woman. "I asked Dawn if I'd still be a woman. I was half joking, but the reality of these surgeries was starting to hit me."
Loraas assured her that the parts don't make the woman. "And she was right," Miller says.
"I don't look at it as losing breasts or ovaries. I think about how lucky I am. I got to have this test, thanks to insurance, and thanks to evolving medicine. I got a choice. Others fighting breast cancer don't."
Miller underwent six surgeries over the course of nine months. And while it was a tough time, she has high praise for the Bismarck medical community, Loraas, Dr. William Altringer who called her at home to tell her no cancer had been detected in her post-surgery lab report, Dr. Rick Becker who performed her reconstruction and Dr. Thomas Hutchens who did the hysterectomy and prescribed an effective follow-up hormone replacement plan. "I feel even better and more whole today than I've ever felt," Miller said. "They are all tremendous surgeons and people. Their professionalism, know-how, skill and kind personalities made all the difference."
One surgery shy of being done with her journey, Mary Klecker Miller met Brady Miller. "From the moment we met, we were inseparable. I remember thinking I'd ultimately have to tell him about it. I really hadn't shared it much beyond a close circle. I needed to handle this quietly, and I wasn't comfortable sharing broadly. But, when I finally told him, his first reaction was, 'I wish I could have been there for you.' The second thing he said was, 'I'm so glad you did this.'"
Brady Miller and Mary Klecker Miller were married this past April. "All my life, I envisioned that I'd grow up, get married and have three kids. That happened when I met Brady, and he brought Grace and Kate to Jack's and my life. My vision was realized, but just not how I'd expected."
Time and perspective have helped her share her story more widely. "I'm finally at that place," she says.
"I've been private because I didn't want it to define me. There is so much more to me than this. But, what helped me was talking to others who had this experience and discovering women who were facing a BRCA reality and needed help. Communicating and bringing light to this will only help others. I think with knowledge comes empowerment and strength."
She cites FORCE (Facing Our Risk of Cancer Empowered), an online community for those with BRCA gene, as a great resource. "I lived on that community for a while -- it's an amazing support system. I remember reading a blog about how to prepare for a double mastectomy -- it was so helpful."
She also credits BRCA breast cancer survivor Erin Green for steering her toward great resources, and offering good advice. "Erin is Jack's aunt and godmother. She's also a fighter and survivor. I drew on her strength."
Miller says watching her mother's fight and being a mother brought urgency to her decision, but that the choice is a very private one.
"I was compelled to do this. That motherhood connection drove me -- whatever it takes to protect your child. But, this is so personal -- I never want to tell people what to do. I just want to help anyone struggling with a decision."
To learn more, go to the FORCE website at www.facingourrisk.org.
Miller also is happy to visit with anyone considering the BRCA test or facing a BRCA diagnosis.
Marnie Butcher Piehl lives in Mandan with one husband, two dogs and three sons. Most days find her happily working, gardening, reading and running around with her boys.