Surrounded by Breast Cancer

I thought I could escape the fate of four generations of my family because I tested negative for the BRCA mutation. I got breast cancer anyway.

Get Permission

In [women with strong family histories of breast cancer], I believe it’s okay for oncologists to push for more aggressive treatment.

— Norma E. Roth

Nine women on my mother’s side of the family have been diagnosed with breast cancer, and nearly half have died from their disease, including my mother. With odds like these, I was determined to do what I could to stay ahead of this dreaded monster I thought was surely coming for me.

First Tests Negative

In 1997, I underwent genetic testing for the BRCA gene mutation and was relieved when it came back negative. Then 3 years later, at age 36—as soon as I could after having given birth—I had a baseline mammogram, and it too showed no sign of cancer. So, despite my family history, when a routine mammogram in 2004 picked up a small, nonpalpable tumor with one or two suspicious-looking calcifications in my right breast, I wasn’t expecting it to be cancerous—and neither was my surgeon.

When the pathology report from the biopsy came back positive for medium- to high-grade ductal carcinoma in situ (DCIS), the news was shocking. Even worse, although my surgeon was certain that he had gotten clear margins when he excised the tissue, the pathology report showed that the margins also contained malignant cells.

My treatment options included a lumpectomy with radiation or a complete mastectomy, but I chose the most radical of all treatments, a bilateral mastectomy with breast recronstruction. Given my family history, I just didn’t think a lumpectomy with radiation or even a mastectomy was enough to ensure that the cancer wouldn’t recur, and I was proven right.

Facing Mortality

Even though the pathology report found that my left breast was healthy, one quadrant of my right breast contained microscopic medium- to high-grade lobular and ductal carcinoma in situ cells. I was a ticking time bomb. After the diagnosis, both my gynecologist and my oncologist treated me as if I had tested positive for the BRCA mutation and advised me to have a prophylactic oophorectomy.

At the time, I just wasn’t emotionally ready to take such a radical step, but a year ago, I went through with the surgery. I don’t think anyone who hasn’t gone through these surgical procedures can understand what it’s like for a person to consciously decide to remove healthy body parts to prevent cancer. It was a very difficult choice, but my anxiety about developing additional cancers overrode everything else. It’s one thing to have cancer come knocking on your mother’s door, taking her away. It’s quite another when it comes knocking on your own door and you are staring mortality in the face. Most of all, I didn’t want my three young children to be raised without their mother.

Advocating Aggressive Treatment

Having this experience has taught me that doctors need to offer women with strong family histories of breast cancer more aggressive treatment options. Three mammograms leading up to my breast surgery had only picked up the one tiny tumor, so it always troubles me when I hear about other women at high risk being given the option of lumpectomy plus radiation. In these situations, I believe it’s okay for oncologists to push for more aggressive treatment, including bilateral mastectomy, because until you can actually examine the tissue, you can’t know for certain what’s growing in there.

I also now understand that being genetically screened for the BRCA gene mutation and testing negative does not obliterate the chances for developing breast cancer. In addition to me, two cousins also tested negative for the BRCA mutation, and we were diagnosed with breast cancer within 6 months of each other.

Today, I try to live life to the fullest and plan for the unexpected. ■

Norma E. Roth is the author of Pink Ribbon Journey: Stories from the Heart and lives in Cherry Hill, New Jersey.