Why a double mastectomy was the right decision
Ruth O. Selig explains how her identical twin was her lifesaver.
Nearly 40 years ago, I had both of my breasts removed. Here’s the reason it was the right decision to make.
In 2000, 20 years after my breast surgery, I had the BRCA test.
The report stated I tested positive for the deleterious mutation BRCA2 that “may confer as much as an 84 per cent lifetime risk of breast cancer and a 27 per cent risk of ovarian cancer by age 70.”
In 1980, when I made my decision, I knew nothing about BRCA mutations.
Reproductive cancer made its first awful appearance in my family in May 1979.
My identical twin, Rollyn Krichbaum, wrote an article for 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 18-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.
The looming spectre of breast cancer terrified me as I breastfed 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, “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 fulfil many of my dreams and goals.”
She reached 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.
“I have just had the most marvellous 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 asked me to visit specialists to make sure I didn’t have breast cancer.
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. They were benign.
I desperately wanted to live. A friend suggested I call her brother-in-law, 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 a Houston cancer centre.
Their judgment: My having an identical twin with breast cancer put me at extremely high risk; they supported the operation.
On Nov. 3, 1980, I underwent an eight-hour operation for both breast removal and reconstruction.
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.
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 (dilation and curettage) 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.
In recent decades, research helped confirm my earlier decisions. Researchers estimated that when one fraternal twin was diagnosed with any cancer, the co-twin’s risk of getting cancer was 37 per cent; among identical twins, the risk jumped to 46 per cent. 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.
I will always believe 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.