Positive Results

Making the Best Decisions When You're at High Risk
for Breast or Ovarian Cancer

A book by Joi L Morris and Ora Karp Gordon, MD

About Joi

Joi L. Morris, BRCA2 positive mother of two, shares her experiences with genetic testing, high-risk surveillance and preventive surgery in the enthusiastically acclaimed book Positive Results. Read more

About Ora

Ora Karp Gordon is not only a gifted physician specializing in medical genetics but also a genetic counselor with a passion for sharing knowledge with her patients. Through Positive Results, she shares her knowledge about breast and ovarian cancer genetics with everyone. Read more




Positive Results is also available from:

Barnes & Noble

Amazon

&

IndieBound

Chapter 1

Fresh out of law school, I moved to Los Angeles to begin my career as an attorney at one of the nation's largest law firms. New apartment near the beach, new convertible for my commute, new gynecologist. At my first appointment with Dr. Mandel, breast cancer was uppermost in my mind because my mom and her grandmother had both battled breast cancer only a few years earlier. I was midway through my junior year of college when Mom was diagnosed at the young age of forty-three, and memories of her fight were still fresh. Indeed, throughout my twenties, breast cancer was never far from my thoughts. But in 1989, the breast cancer genes had not yet been discovered and there was no way for me to know if my mother's early bout with cancer was due to heredity or just bad luck.

I had lots of questions for my new doctor. What can I do to keep from getting breast cancer? Does the fact that Mom was so young when she got it affect my risk? Should I avoid birth control pills? Should I have a mammogram now? Dr. Mandel was patient and thorough and did not rush me out of the office. I learned that breast cancer is generally present for ten years before it is detected. I also learned that mammography is less accurate for young women with dense breasts, like mine.

At my annual checkups, Dr. Mandel and I discussed breast cancer and when I should begin screening. In the meantime, I got married and started my family. Dr. Mandel helped deliver my first son in 1995 and my second in 1998. After I weaned my youngest, we scheduled my first mammogram. I was thirty-six. At that time, the American Cancer Society recommended mammograms starting at age forty but I wanted to start sooner because of my family history. My mammogram was normal but the report noted that my breast density might affect the accuracy of the screening.

By this time, BRCA1 and BRCA2, known as "the breast cancer genes," had been discovered. This was big news but, at first, testing for these genes was primarily done through research studies. A couple of years later, when the test became widely available to individuals, Dr. Mandel started talking to me about being tested for a genetic mutation because breast cancer under age forty-five is one indication that the cancer may be hereditary. My mom was only forty-three at the time of her diagnosis, and she was not the only person in my family to have had breast cancer. Her grandmother had it also.

Dr. Mandel warned me that if the test were positive I would have to face the limited number of options available to reduce my risk. The best would be prophylactic mastectomies and breast reconstruction. But surgery to remove the breasts that had just finished nursing my son seemed almost unthinkable.

I found these conversations deeply troubling. Medical technology could now answer some of the questions I had been asking for more than a decade. But did I really want to know the answers? What if I tested positive for the BRCA gene? What would I do? Dr. Mandel's last bit of advice echoed loudly in my mind: Don't do this until you are ready to deal with the answer.

As we talked further, I began to understand that a positive test result meant facing painful, scary choices. I would have to decide whether to remove my healthy breasts, or my healthy ovaries, or both. As preventive measures, the removal of my breasts and ovaries would be the best way to avoid getting breast cancer or ovarian cancer.

"Ovarian cancer? But nobody in my family has had ovarian cancer."

"Yes, but a BRCA mutation raises your risk of ovarian cancer as well as breast cancer," he said. This was news to me.

My husband and I were still contemplating having a third child; although we were having trouble figuring out how our busy lives could accommodate a new addition to our family. How could I add determining my breast cancer risk to the mix? We procrastinated on the baby question right up to when I turned forty, when we decided that our family was complete with our two boys.

I began to think frequently about Dr. Mandel's recommendation that I consider genetic testing, even though my mammograms had all been normal. By the time I turned forty-one I was fast approaching the age my mother had been when she found her first (benign) lump. After my next visit with Dr. Mandel, I began to search the Internet to learn more about the BRCA genes and genetic testing.

The statistics were mind numbing. Each gene has thousands of different potential mutations. With some mutations the lifetime risk of getting breast cancer can be as high as 90 percent. Now I decided I did want to know the information stored in my DNA. I would deal with the results, whatever they might be.