My Hereditary Breast Cancer Story

I don’t have the BRCA gene mutation. Neither does my daughter. She and I are the third and fourth generations of women on the maternal side of our respective families to receive breast cancer diagnoses. Both my mother and grandmother died from their diseases. This sure sounds like hereditary cancer to me.

My grandma was about 40 years old when she was originally diagnosed with breast cancer, during the World War II era, and her surgery was successful. As I grew up, I knew her cancer story only as one of survival. Even though I’ve always had some tendency to worry, there was no reason to worry about Grandma, until many years later.

But in my experience with my mom’s cancer, it was a very different situation. My mother had many characteristics of a narcissist.Being one of her three children, I became the scapegoat of the family and my self-esteem plummeted. My confidence grew somewhat once I moved 350 miles to a different city and then became a young mother, but I still struggled in my communication with her.

Emotional issues overwhelmed me from the time my mother calledand let me know that she had been diagnosed with breast cancer. Her cancer metastasized soon after I initially heard from her.

She had round after round of several different chemotherapies, and the combination of her disease and her treatment left her in considerable pain, with fatigue, nausea and vomiting. She opted to pass up on another regimen of chemotherapy once her cancer had spread to her liver. She passed within two to three weeks. Neither of my siblings were there for Mom, while I traveled back and forth across Pennsylvania to be with her. She appreciated my help and I was glad to be there. There was no deathbed reconciliation, but we spent quality time together.

One day in the last two weeks of her life, Mom added her watch, with the beautiful hummingbird on the face, and my name, to her list of personal items she would be leaving to special people. I was touched.

My mother had been gone for five years when I heard from the imaging center where I had a mammogram a few days earlier. “Please return for a follow up ultra-sound,” it read. Panicking even before I returned to the center, it shook like a leaf as I opened the front door. The radiologist showed me what concerned him: calcifications. They were in a very small area of my left breast, toward my back and under my armpit. My prescription read “Ductal Carcinoma in Situ (DCIS) – biopsy.” Despite a lot of poking of the long needle, that biopsy was unsuccessful and a surgical biopsy was needed. Most of my left side was bruised, and I had no results!

A week later I finally knew. I had DCIS: the cancer cells were confined to a milk duct.

I got very lucky and was referred to a wonderful surgeon. After examining me, she led me to her office. I told her a little about my family health history. She told me about the typical treatment for DCIS— one month of daily radiation treatment followed by five years of Nolvadex (tamoxifen), a daily pill, used to reduce the likelihood of recurrence.

Then although I was not rich or famous, I took the risk and asked her about a prophylactic mastectomy (surgical removal of one or both breasts to reduce risk of recurrence) and reconstruction. She said simply, “yes.” I was pleasantly surprised. I had, by then, worried enough about the hereditary nature of the family breast cancer. My mastectomy was totally successful, but right from the start there were problems with reconstruction. The stitches around my breast implant loosened, several completely fell out. Despite describing then showing the doctor my worrisome situation at the first follow up appointment, he responded, “It will be fine.”

However, my skin got worse, ultimately becoming swollen and even discolored. It took three calls before the plastic surgeon would see me; I was not yet aware of the risk associated with a foreign object in the body in connection with an infection. The implant was removed, and I was treated with IV antibiotics, followed by pills, then waited almost six months to receive a new implant, then repeat the entire recovery process.

My cancer story might have ended there, had it not been for the fact that I was just the third woman in my family to have traveled a breast cancer journey.

In June 2018, I was diagnosed with my second cancer, and that cancer was life-threatening, stage 3B non-small cell lung cancer. I had a supportive husband, and other family members and friends who were cheering me on, but I especially appreciated my daughter’s two trips from Maryland to Western Pennsylvania to help me as I struggled with chemotherapy. She took on several major cleaning projects, and when not working on those, asked me lots of questions about our apparently genetically linked breast cancers. She had met with a gynecologist who had a special interest in hereditary cancers. She got approval from her insurance company and was tested for all the more common gene mutations. Next, soon after returning home to Maryland, she went for her first mammogram.

Her results came back the same as mine had: DCIS. Oh my! How could I be there for her? My out-of- town daughter had cancer, her children were just 2 and 4 years old, and I was still in treatment!

She had a mastectomy and reconstruction, which, by then, was a much more common procedure. That was followed by a biopsy of her mastectomy. Her cancer had become invasive; it had not been confined to the milk duct. In telling me the news she initially held back the tears, then cried and cried. I promised I’d be there for her.

I managed to travel back and forth to her home, primarily by train, five times over her six months of chemotherapy.

I believe I am one of the four women on the maternal side of my family who are linked by a common mutant gene, yet to be discovered. And I’m confident this mutant gene has not just touched my family, but many families throughout our nation and the world. I think about my two young granddaughters, and it breaks my heart. It may not be long at all before one of them receives a breast cancer diagnosis.

After all, each generation has been diagnosed at a younger age than their mothers received theirs.

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