Having a mastectomy is nothing any woman would wish on her worst enemy. It is a complex procedure, often excruciatingly painful, that can involve weeks or months of reconstruction and recovery. It changes a woman physically, emotionally and sometimes spiritually and can have lasting effects on her relationships.
Yet, if we had to, we would likely undergo it to rid ourselves of cancer. But would we do it if it were a high-risk lesion isolated in one breast? What if there was no detectible malignancy but a genetic mutation that significantly increased the risk of developing one?
Shelly Winemiller, Corinne Berg and Susan Swenson faced those questions and chose bilateral prophylactic mastectomy—a risk-reducing, double mastectomy that is no less painful than total mastectomy for a cancer diagnosis, which left them just as changed.
In January of this year, Shelly Winemiller went in for her yearly mammogram and her radiologist found a radial scar—a star-shaped breast mass that is benign but may also be associated with higher risk lesions, such as pre-cancer or cancer. Shortly thereafter, Shelly had a lumpectomy where doctors removed the mass and pathology analyzed the tissue while Shelly and her doctors waited in surgery in case additional tissue was needed. More tissue was needed, so a second sample was taken from a different part of Shelly’s breast.
Shelly received the immediate results the same day as the procedure—her son’s 15th birthday. The radial scar was benign. The family celebrated.
Four days later, the results of the second sample came back and revealed Shelly had LCIS—lobular carcinoma in-situ, a lesion that is considered a high-risk marker and associated with increased risk of developing an invasive breast cancer later on.
Immediately, two things happened: Shelly’s husband, Mark—a doctor—spent the weekend intently researching every study he could get his hands on about LCIS and its prognosis; Shelly spent the weekend in St. Mary’s Chapel praying for guidance. The Winemillers also discussed the diagnosis with their family.
A smart woman who researched her diagnosis and its prognosis thoroughly, Shelly was well-informed of all her choices, which included keeping her breasts and undergoing enhanced surveillance and controlled medications (i.e., chemoprevention). In fact, she was told by one medical practitioner, “You don’t have cancer so you don’t need to do this. Taking the medication and watching you for five years will probably work.”
Shelly knew a LCIS diagnosis did not necessarily mean she would develop invasive breast cancer, but a risk-reducing, bilateral prophylactic mastectomy was what she needed to give her peace.
“It is a complex fabric that makes up the decision,” Shelly explains. “Many threads woven throughout a life lead you to make a decision like this.”
“There are things in one’s life that you do not get to have a choice about. As a little girl I was sexually abused by my priest. I didn’t get to have a choice about that painful time in my life. In my stillness in St. Mary’s Chapel after my LCIS diagnosis—where I literally lied down in the pew to cry and pray for hours on end—I felt God telling me, “For this my dear Shelly, you have a choice. I am giving you a choice. It will not be pain free but through this pain you will be blessed and it will be used for great purpose.”
Prior to the weekend spent in stillness at St. Mary’s Chapel, I processed and heard other people’s opinions about what I should do. Around the dinner table I heard the wise words of my 17-year-old daughter Julia: “Mom, gather all the information about LCIS and then sit quiet. You always figure out what to do.” My 13-year-old Isaac looked sad and said, “I am afraid if you take just the medicine you will die of cancer in five years.” My son Samuel, who just turned 15, added with a quiet voice, “Yea, I would be in college.” This dialog contributed to my decision to have a double mastectomy. In the end though, it was me and only me with Abba (God) to decide what path I was going to take.”
Corinne Berg was in her mid-20s when she read a magazine article discussing the connections between breast cancer, the BRCA 1 and BRCA2 genetic mutations and Ashkenazi Jewish heritage.
The BRCA 1 and BRCA2 genetic mutations stand for BReast CAncer 1 and BReast CAncer 2, and they are mutations that occur in a gene that controls cell growth. When the gene is mutated, there is an increased risk of cancer because cells can grow out of control. Most women have a 1 in 300 to 1 in 800 chance of being a BRCA2 carrier; this ratio rises to 1 in 50 for women of Ashkenazi Jewish ancestry—like Corinne (known as Cori to her friends and family).
“If I had a chance of having [a genetic mutation], I wanted to know,” Cori remembers. So she contacted her family doctor who made a referral to the Mayo Breast Clinic who then referred Cori to a genetic counselor. Because deciding who should undergo genetic testing and its ramifications can be challenging, it is recommended that women undergo counseling with a specialized counselor before it is done.
Cori’s counselor examined her family history and educated her about the outcomes of genetic testing (a positive result does not mean she would inevitably get cancer and a negative result does not mean she will never have it). She thought it was unlikely that Cori had the mutation. But Cori was adamant about being tested, so the counselor worked with her to get the blood test submitted that day.
Two weeks later, the counselor contacted Cori and was sad to report that Cori was a BRCA2 gene mutation carrier.
“I thought of my family and worried about my sister and mother,” says Cori, recalling that day two years ago. “I thought, ‘Who did I get it from? What if they have it?’ I prayed a lot and was thankful I was still healthy. It wasn’t a cancer diagnosis; it gave me an opportunity to be proactive with my life and make decisions.”
Firm from the first
From the beginning, Cori knew she wanted to have a bilateral prophylactic mastectomy. Some people thought her actions were drastic at such a young age and advised her to wait until after she had children. With no cancer in either breast, Cori could have chosen to keep her breast tissue and undergo enhanced surveillance.
But when she was a young girl, Cori watched her maternal aunt suffer horribly and pass away from early-onset breast cancer (diagnosed at age 33). It greatly affected Cori, and she wanted to save her family that agony if she could. The risk-reducing double mastectomy had been shown to reduce the breast cancer risk up to 90% in BRCA carriers; that knowledge gave Cori the comfort she needed.
“It was my choice, not my husband’s, not my mother’s,” says Cori. “It was mine, my body and even if I do get breast cancer someday at least I did everything I could not to get it.”
Susan Swenson was in Chicago caring for her dying mother when her daughter, Corinne Berg (read Cori’s story on page 34), told her she was a BRCA2 carrier. Because the gene is inherited, Cori recommended Sue get tested.
“I decided to do it,” Sue says, “because [the gene mutation] had come from one of her parents, and I wanted to know, so I went in.”
Just before Cori’s mastectomy, Sue’s results were back. She was also a BRCA2 carrier.
Her daughter’s decision to have surgery greatly influenced Sue’s decision to have the same procedure: “I watched my daughter have a mastectomy, and I was older and my risks were higher at my age and I had been blessed to not have it this far… I didn’t want to make a decision to not do it and then have my daughter—who also had the gene—have to care for me if I got cancer.”
Many people didn’t understand Sue’s decision.
“‘What do you mean you want a mastectomy when you don’t have cancer?’” Sue recalls one insurance agent asking her.
She attributes such responses to misinformation about how cancer develops and a BRCA2 carrier’s increased risk.
“First of all,” says Sue, “a lot of people didn’t understand about the mutation and obviously, therefore, didn’t know about the risks…or the difference between genetic controlling cancer and sporadic cancers.”
According to Dr. Sandhya Pruthi at the Mayo Breast Clinic, approximately 80% of all breast cancer is thought to be sporadic (i.e., not associated with family history or the result of a genetic issue); 10-15% of breast cancer is traced to multifactorial familial risk unrelated to the BRCA gene mutation, but only 5% of the disease is attributed to the BRCA 1 or 2 mutation. Unfortunately, however, for those rare carriers, they have a 40-85% lifetime risk of developing the disease versus a 13% lifetime risk for the rest of the U.S. population.
Sue proceeded with the procedure and considers her decision a blessing because her doctors found stage zero DCIS—ductal carcinoma in-situ—during surgery, despite having had a normal mammogram a month before.
“Knowledge is power,” Sue says of her decision. “So with this procedure I could change or try to change the course of my life.”
Shelly, Cori and Sue agree they are different women now. Not only have their surgeries decreased their overall breast cancer risk and given them peace, it has altered their career paths and future aspirations.
Shelly is now combining her career in marriage and family therapy with her experience from her mastectomy to form a support program that will help families, not just the patient, through this process. Cori, a L.P.N., is working on her R.N. and intends to pursue a master’s degree so she can work in the Mayo Breast Clinic (her dream job) and help women as she was helped. Sue volunteers as a hotline call-taker for FORCE (Facing Our Risk of Cancer Empowered), a national nonprofit organization devoted to providing support, education and advocacy to women with hereditary breast and ovarian cancer. Visit facingourrisk.org for more information.
All three women are applying their experiences to help other women and their families make informed choices about breast cancer…whatever they may be.
Marlene Petersen, Shelly Winemiller, Susan Swenson and Corinne Berg would like to thank the many clinicians and counselors who walked these three ladies from diagnosis to recovery, especially Nicole Sandhu, M.D., Ashley VanDenBoom, M.S., C.G.C., Steven R. Jacobson, M.D., Diane L. Huseth, R.N. Special thanks also to Sandhya Pruthi, M.D., who shared her extensive knowledge of breast cancer and BRCA 2 to produce this story.
*All personal medical information was provided directly and exclusively from Ms. Winemiller, Ms. Swenson and Ms. Berg.; none was ever discussed or divulged by Mayo Clinic.