Nearly 40 years ago, when prophylactic double mastectomies did not generate the reassuring headlines they do today, I had both of my breasts removed. It was a decision that began in tragedy and fear but unfolded into health and healing.
It was the right decision, and I want to explain why.
Today genetic testing offers information indispensable to making informed medical decisions about treatments and risk reducing options. Not all breast cancers are hereditary (10 percent or less). But for patients at high risk because of family history or genetic make up, such information can be lifesaving.
In 2000, 20 years after my breast surgery, I had the BRCA test. The report from Myriad Genetic Laboratories Inc. stated that I tested positive for the deleterious mutation BRCA2 that “may confer as much as an 84 percent lifetime risk of breast cancer and a 27 percent risk of ovarian cancer by age 70.”
In the fall of 1980 when I made my decision, I knew nothing about BRCA mutations. Angelina Jolie was probably starting kindergarten. The BRCA genes (for BReast CAncer) were discovered in 1990, but it was several years more before scientists connected their mutations (BRCA1 and BRCA2) to cancer risk. Myriad Labs offered the first BRCA genetic testing in November 1996.
Reproductive cancer made its first awful appearance in my family in May 1979. My identical twin, Rollyn Krichbaum, told the story in an article published in the spring 1981 issue of Wellesley, the college alumnae magazine:
Who could be more blessed than I? I had everything I’d ever wanted, a terrific husband, great kids, stimulating job, and an adorable eighteen month-old baby. I also had a twinge in my right breast. My doctor was alarmed . . . and five days later — May 11, 1979 — I was on the operating table.
Rollie’s radical mastectomy at age 37 included removal of her mostly malignant lymph nodes and the beginning of almost three years of struggle. As our lives bifurcated, the looming specter of breast cancer terrified me as I breast-fed my own baby, born one month after Rollie’s mastectomy. Doctors told me nursing might reduce my cancer risk, a belief supported by recent research.
On April 1, 1980, the fast-growing cancer reappeared in her bones, and Rollie began a diary to help her, as she wrote, “bring half a life to a fully rounded conclusion”:
Although it seems unbearably cruel that I should have become a victim of a terminal disease so early in my life, I feel I was given enough time to fulfill many of my dreams and goals.
While hoping for the best, she prepared for the worst, reaching an extraordinary level of peace:
I don’t seem to be afraid of death anymore. . . . Now it seems like a very natural thing once the body can go on no longer.
Rollie’s doctors broached a long-shot experiment — a transplant of bone marrow from me. She was ecstatic:
I have just had the most marvelous thought filling me with the first rays of hope — being an identical twin may save my life. . . . Ruthie would keep me alive and I could live years more.
To prepare for a possible transplant, Rollie’s doctors in Detroit asked me to visit specialists in my home town of Washington to make sure I didn’t have breast cancer. My OB/GYN had responded negatively to my earlier request for semiannual breast exams. I decided to find a new OB/GYN and consult general surgeons specializing in breast cancer.
Two surgeons found nothing but recommended (partial) breast reduction, then believed to lessen breast cancer risk. Sibley Memorial Hospital surgeon Peter Petrucci recently told me, “I am glad you ended up with prophylactic mastectomies; breast reduction has not been shown to be associated with cancer risk reduction.”
The third surgeon I consulted in 1980, William Feller (now deceased), thought he felt something suspicious. In September he removed two small lumps in my right breast where my twin’s initial malignancy had occurred. Mercifully, they were benign.
After this scare, I desperately wanted to live. A friend suggested I call her brother-in-law, San Francisco medical oncologist Brian Lewis. He urged me to undertake a rare operation being done for high-risk but otherwise healthy women: a prophylactic bilateral mastectomy and reconstruction.
Feller hesitated and wanted to consult colleagues at Houston’s MD Anderson Cancer Center. Their judgment: My having an identical twin with breast cancer put me at extremely high risk; they supported the operation. My prophylactic double mastectomy with reconstruction may have been the first of its kind in the D.C. area; it certainly was Feller’s first.
He recommended plastic surgeon John Little, who had recently performed a bilateral reconstruction following a single prophylactic mastectomy. The patient had had breast cancer and a single mastectomy five years earlier.
My cousin, psychiatrist David Scharff, told me about his friend Shelley Levi, who had had breast reconstruction. David suggested I call Shelley to learn about her experience. In an amazing coincidence, she turned out to be the patient Feller had mentioned. In her Bethesda living room, she told me about her 1974 breast cancer and her decision five years later to ask surgeons Petrucci and Little to perform a single prophylactic mastectomy and a double reconstruction, which she proudly showed me by lifting up her shirt.
I remember my words exactly: “You look like a Playboy bunny. If I could look like that and never worry about breast cancer again, I would have the operation tomorrow.”
On November 3, 1980, I underwent an eight-hour operation for both breast removal and reconstruction. Feller visited me all five days in what is now MedStar Georgetown University Hospital. I had no complications, one blood transfusion, and drains. While my chest felt tight, relief and optimism lifted my spirits.
The plastic surgeon said, correctly, the scars would fade and the tightness would diminish. A 36C bra replaced my 38DD. The silicone implants, placed underneath my muscles, skin and veins, remained soft. An outpatient surgery several months later completed the cosmetic creation of nipples. My health insurance covered all the costs.
Emotionally, survivor’s guilt replaced crippling fear. Rollie never told me her reaction to my surgery, but years later I read her diary entry for Jan. 17, 1982:
I find it hard to be with Ruth now. . . . I know she must bear terrible guilt about me but . . . all I see is her cute new figure and the fact that she has a future.
Rollie wrote these words three weeks before her death, three months before our 40th birthday, and 14 years before the first BRCA test.
In late January, Rollie’s doctors ruled out the bone marrow transplant; it couldn’t be done safely, they said. She was devastated but bravely asked to move to palliative care. On Feb. 4, 1982, she ate ice cream in the morning while visiting with her husband and children and, in the afternoon, no longer able to talk or even squeeze our mother’s hand, she slipped away.
In 2000, during my semiannual pelvic sonogram, my OB/GYN Thomas Magovern discovered a uterine polyp. A biopsy proved negative, but the polyp needed removal. Would I choose a D&C or a hysterectomy? The BRCA test was ordered and came back positive for BRCA2. By then several other family members had been treated for prostate, uterine or ovarian cancer. Magovern gently explained: “Your reproductive organs gave you two beautiful children; now they primarily represent risk.”
I chose an oncology surgeon to remove my uterus, cervix, ovaries and fallopian tubes while also looking for any precancerous tissue, which he did not find. Since I had no history of cancer or reproductive organs, I began a daily low dose of estrogen. Within a month, my mood smoothed out, hot flashes disappeared, and renewed energy and deep sleep returned. Long separated and now divorced, within the year I began dating the man who would become my life partner the past 15 years.
In recent decades, research helped confirm my earlier decisions. Twin studies compare disease incidence in identical and fraternal twins, using huge data sets of twin pairs. Twins provide a natural laboratory for estimating the comparative influence of genes and the environment, information relevant to all people, not just twins. Twin studies give us statistics on the genetic risks of diseases such as diabetes, coronary heart disease, stroke or cancer.
One study, for example, estimated individual risk for 23 different cancers using data on 200,000 twins in Denmark, Norway, Sweden and Finland.
Researchers estimated that when one fraternal twin was diagnosed with any cancer, the co-twin’s risk of getting cancer was 37 percent; among identical twins, the risk jumped to 46 percent. This statistic underscores the high risk of anyone whose identical twin has cancer. For a twin with a BRCA mutation, the risk for breast and ovarian cancer is much higher.
The study also showed that some cancers carry higher genetic risks than others, for example, skin melanoma, and the reproductive cancers (prostate, ovarian, breast and uterine).
It is because I am an identical twin that I will always believe that my sister saved my life. Had Rollie and her doctors known about our genetic mutation and our family’s subsequent reproductive cancers, how different her life — and mine — might have been. It was my twin’s bravery in facing her tragic illness that helped me take proactive steps to minimize my risks. I still think about my twin sister every day, knowing that only one of us could live to see all of our children grow to adulthood.
Selig is writing a book about identical twins. She currently serves on the board of the Twinless Twins Support Group International and recently retired from a 35-year career at the Smithsonian Institution.