I’m a Man with the BRCA Genetic Mutation

I am a man. I have the BRCA genetic mutation. I am a cancer survivor. I was diagnosed with prostate cancer in September 2015. I was 51 years old. I have been cancer free for almost three years.

My first exposure to cancer was long before genetic testing was a thing. I was around 10 years old when my paternal aunt, Shirley, died of breast cancer. I grew up in a non-religious Jewish family. On my father’s side he had two sisters. He was the middle child. They all made efforts to get the whole family together every Friday night at one of their respective houses to eat a chicken dinner.

Besides my aunts, uncles, and cousins, in attendance was Grandpa Joe, Grandma Honey, and for most of my pre-adult life, my great-grandmother, who we all called Nanny. Each family drove from all sides of Los Angeles to meet for those few hours. Those Fridays are a very fond memory of my childhood.

During the late 1960’s through the early 1970’s, the medical procedure I observed, or was told by family members, for treatment of breast cancer was to surgically remove any and all infected body parts. Next, douse the rest of the body with chemotherapy. I recall witnessing the results of Aunt Shirley’s treatment cycle, or at least the visible effects they imposed on auntie Shirley. She was a very tall imposing woman with a heart just as large. I recall her vibrant personality displaying a strong façade throughout the process. She was always positive and hopeful. However, the toll cancer was taking was obviously pasted in her greying face as her towering size shrinking as her disease travelled through her body. She was strong, but the cancer was stronger. She died at 43 years old.

I am the youngest of four children. And I am the only boy. In 2000, around my sister Laura’s 40th birthday, she and her college roommate left on a trip to Europe to celebrate their birthdays. Years earlier, they promised each other in college, “where ever we live, and whatever job we have, we are going to go to Europe.” That is exactly what they did.
During the trip, Laura felt breast pain. She was not too concerned as Laura was already considered a busty woman with a history of cystic activity. After their adventure, upon returning to Las Vegas, Laura visited her doctor. She was assured her condition was likely not cancer as the pain Laura was feeling was not one of the common symptoms associated with breast cancer. The pain continued. A short time later, Laura returned to the doctor who scheduled a biopsy. The doctor said not to worry. However, the biopsy showed Laura had breast cancer. The next step was a lumpectomy. The tumor the doctor thought was of no concern turned out to be 10 centimeters large. The pathology came back… Laura was instructed to get her affairs in order.

Even though almost 30 years passed since Aunt Shirley’s death, to a layman, the proposed treatment plan for Laura seemed tragically familiar to the one employed on Aunt Shirley. First, surgery to remove the cancer wherever it would appear. Then chemotherapy. Then repeat.

Laura’s eight-year struggle was spent searching all over the country for alternatives in treatment. At Cedars-Sinai hospital Laura qualified to be part of a breakthrough stem-cell transplant procedure. At that time an experimental procedure with a lot of controversy. Therefore, the breakthrough procedure was not covered by insurance. Laura and her husband, Bruce would have to pay out of pocket, a cost they could not afford. Long-story short, fortunately, her husband’s uncle wrote a check for hundreds of thousands of dollars to Laura’s doctor. The stem-cell treatment was scheduled.

The month-long transplant procedure isolated Laura in a germ-free room adjacent to the hospital to protect her from infection. As I understand the process, the doctors remove stem-cells, store/freeze the cells, employ a heavy dose of chemotherapy to kill all the cancer cells, then reinsert the stem-cells. After the procedure, Laura was tested and probed and then declared cancer-free. Laura had regular follow-up testing during the next five years. As many cancer survivors know, five years of cancer-free diagnosis is an important milestone spoken by all medical professionals and discussed between survivors.

My next statement may sound too familiar to too many of us but approximately four years and eleven months after Laura’s cancer-free diagnosis, her cancer was back. Although she believed the tumor removed five years earlier and the stem-cell procedure had stopped the cancer, Laura was wrong.

It was 2005 when our family first heard about BRCA. As part of the advancement in genetic testing, Laura took the BRCA test. Her results were positive for 5385insC - BRCA1 genetic mutation. We found out BRCA is directly passed from a parent. However, in 2005, nobody mentioned to me the effect BRCA can have on men. Truthfully, I never even considered I would carry a breast and ovarian cancer genetic mutation, mostly because I was a man. Genetic testing was very expensive and not covered by insurance. Even if it was free, I am not sure I would have been tested for the same reason; I am a man.

Laura’s treatment protocol changed after discovery of the BRCA mutation. She was very proactive. Laura had an elective double mastectomy. Then some months later an elective total hysterectomy. Chemotherapy and radiation, shots and pills were her daily routine. Cancer free. Cancer back. Cancer free. Cancer back.

Almost 10 years to the day of writing this, on October 31, 2008, Laura lost her battle. She was strong. The cancer was stronger. She died on Halloween. It was Laura’s favorite holiday. Each year we celebrate her choice to pass on her favorite holiday. If you knew Laura, you would know she wanted everybody to remember her forever. Laura got her wish as we will celebrate her on Halloween and remember her every other day of the year.

In 2008 when Laura died, I was forty-four years old. I found an amazing nurse practitioner in my area and I began to have a yearly full-physical examination with extensive blood work. I wanted to be preventative in order to remain healthy. At the time my sister passed, I suffered from no aliments. I took no prescribed medication.

In 2013, Angelina Jolie came forward to the world in a fearless declaration after discovering she carried the BRCA1 mutation. With Ms. Jolie’s statements and activism, genetic testing for BRCA became affordable and covered by insurance with a demonstrated family history of cancer. I have three sisters. My other two sisters were tested and the are not carriers of the mutation. BRCA1 mutation affected only Laura and me. Fifty percent of us have the mutation, the other siblings do not.

In summer 2015, I was contacted by my nurse practitioner. She told me she wanted me to have an examination from a urologist. My PSA score was 3.94, the same as previous two years. Normal is a PSA under 4. I followed her instruction. At the time of my examination, I had no symptoms. I suffered from no aliments. I took no prescribed medication. At the appointment, a digital examination was performed. That part of the exam lasted just a few seconds. The doctor requested I return the following week for a biopsy of my prostate. I asked, “did you feel something wrong?” He replied, “your prostate is large, I just want to be sure.”

I had the biopsy. With each pop of the medical instrument sixteen core samples from my prostate were taken. One week later, the results were in, I had prostate cancer. My prostate cancer screening and biopsy produced a Gleason score of 7 (4 3). There were indicators of cancer in most of the cores sampled. Although there are several treatment options available, immediately I knew I was going to have the surgery to remove the infected prostate. I felt at 51 years old, I could not imagine having a radiated prostate sitting in my body for the rest of my life. I wanted the disease out of my body as fast as possible.

My diagnosis was done by a local Ventura doctor. I am grateful for him. However, I felt it necessary for me to have my surgery in a large hospital. I wanted a doctor who had performed the robotic prostatectomy procedure thousands of times. I was fortunate to end up at USC Keck Medical Center. The entire team of professional staff welcomed me, comforted me, and saved my life. Fight on!

There are other cancer stories from my father’s side of the family. I will only mention one more. In the 1980’s my cousin Eileen died very young at 49 years old from ovarian cancer. She was Aunt Shirley’s youngest child. I am not sure if Shirley’s other children were ever tested for BRCA, but because they are in their 60’s and they have not gotten cancer, I guess they likely do not have the mutation. I also assume my father’s other sister did not have the mutation because she is almost 80 years old there has been no cancer in her three children.

Although my father has never been tested for BRCA mutation. We believe his side of the family was the carrier. Shirley, his sister, got breast cancer. My father, now 83 years old, has survived prostate cancer. Laura, his daughter, had BRCA. I have BRCA. Our son Joshua is 23 years old. He has been tested, he carries the BRCA mutation.

Medical advances are taking place every day. Genetic testing is available for myriad purposes. Yet I cannot find any information related to men who carry the BRCA mutation. I hope that will change. For our son he is being told not to check his PSA for prostate cancer until he reaches 40 years old. We are confident there will be many more advances in the research and development of new treatments and procedures. We remain hopeful for progress.

I am a man with BRCA. I was diagnosed September 2015. On December 22, 2015 I had the surgery. I only knew I had cancer for two months. I had no metastasis, no nerve damage, no loss of hair. I had no chemotherapy and no radiation. I only am required to get a blood test, every six months. I am one of the lucky ones. Coming up on three years; I am cancer free. I suffer from no aliments. I take no prescribed medication. I am grateful.