Positive Results: Making the Best Decisions When You're at High Risk for Breast or Ovarian Cancerby Joi L. Morris, Ora K. Gordon
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This unique and important guidebook is a single, comprehensive source of information and advice to help women (and some men) at high risk for breast and for ovarian cancer because of family history and genetic profile. One part memoir, three parts "how to" manual, Positive Results explains in a clear and steady manner the myths and realities of "the breast cancer genes." It lays out all the options in easy-to-follow, compassionate language. It will help women and men decide if they want to pursue genetic testing, guide them in interpreting their test results, and give them a sound basis for making the life-saving decisions required to manage their risks.
Authors Joi Morris and Dr. Ora Karp Gordon cover all of the latest medical options, including genetic testing for breast cancer risk, breast cancer surveillance, assessing risk, mastectomy and breast reconstruction techniques, ovarian cancer surveillance, surgery, managing menopause, and cancer risks in men who carry mutations on BRCA genes. Along the way, Joi tells her personal story and that of other women and men who have made the gut-wrenching decisions required to survive in this world of astronomical risk. At the age of forty-two, Joi learned that she has a genetic mutation on a gene known as BRCA2. The test results meant that her risk of getting breast cancer could be as high as 84 percent by age seventy, and that her risk for ovarian cancer was also high. Compounding her risk was the fact that her mother had developed breast cancer in her forties. After much research and consultation, the result of which is this book, Joi made the difficult decision of undergoing prophylactic mastectomies.
This straightforward and practical approach combined with the poignant personal experience of a woman at risk facing these challenging decisions will provide readers with the feeling that they have had the benefit of a long conversation with both a trusted physician and a friend who has just gone through the same uncertainties they are facing.
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POSITIVE RESULTSMaking the Best Decisions When You're at High Risk for Breast or Ovarian Cancer
By JOI L. MORRIS ORA K. GORDON
Prometheus BooksCopyright © 2010 Joi L. Morris
All right reserved.
Chapter OneMY FAMILY HAS A HISTORY OF BREAST CANCER
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.
Myriad Genetics has a patent on testing for the BRCA genes in the United States and is the only commercial laboratory here that offers this test. I called Myriad and spoke with a counselor. I told her about my mother and asked questions about the test. She said my mother should be the first person in our family to be tested for a genetic mutation as she'd had early-onset breast cancer. The counselor told me that even if my family had a genetic mutation, I might not have inherited it.
Calling my mother to ask her to test for the BRCA genes was hard. At that point, she had been a breast cancer survivor for more than twenty years. Her fear of a recurrence or getting another cancer had receded over time. By asking Mom to test for the breast cancer genes, I was bringing the topic front and center again.
I told her what I'd learned from Dr. Mandel, from the Myriad counselor, and from my own research. We had several conversations, none of which were easy. But as I neared the age she had been when she was diagnosed with cancer, my desire to know if I was closing in on her fate or if her cancer had been just bad luck became stronger. Although I worried that Mom would not want to proceed with this test, she didn't let me down. She made an appointment at a nearby cancer center to find out more about genetic testing, and several months later she had her blood drawn for the test. After six weeks she received her results: negative for BRCA1 but positive for a BRCA2 mutation.
This news came as a shock to us both, even though Mom had had breast cancer at a young age. Ours is not a typical BRCA family that has lost many women to breast and ovarian cancer. In fact, nobody in our memory has died of these diseases. My mother is a survivor and my great-grandmother died of causes unrelated to her breast cancer. At my next appointment with Dr. Mandel, we talked about my mom. What did being BRCA positive mean for her as a twenty-one-year breast cancer survivor? After her initial diagnosis, she had a single mastectomy and chemotherapy. In the years since, each good checkup-without a recurrence or cancer in the other breast-gradually eased her anxiety. But the positive BRCA test results brought back her cancer fear full force. Statistics indicated her chance of getting cancer in her remaining breast was 60 percent. She also had to face a new fear: ovarian cancer. Although I now look at this genetic information as a blessing, it was impossible to think of it as anything other than bad news at the time. It placed tremendous stress on both of my parents, and I felt a little guilty for having started the process that led to this anxiety. And I was worried about my mom's risk. Her ovarian cancer risk seemed especially frightening-in part because of her age and in part because of the difficulty in detecting such a cancer.
Now it was my turn to be tested. I went to Dr. Mandel to have blood drawn to find out if I shared Mom's genetic mutation. Because we knew the specific mutation I might have inherited, I had what is called a "single site analysis"-where the lab looks only for the single known family mutation rather than searching for all of the thousands of potential mutations on both BRCA genes. Single site analysis is far less expensive than the full test, and the results are available much more quickly. Since I worried about how BRCA testing might affect my health insurance, I paid for the test myself.
Dr. Mandel and I talked about my chances of having Mom's BRCA mutation. He explained that I have two copies of each BRCA gene, one from each of my parents. Mom's mutation is on one of her two copies of the BRCA2 gene, which means I have a 50/50 chance of inheriting her gene with the mutation. We talked about what I might do if my test were to come back positive. My mouth said I would probably have mastectomies and I needed to know more about the different reconstruction options. But even as I said this, I simply could not wrap my mind around the idea of cutting off my beautiful, healthy breasts. The logical part of my brain said if my breasts were going to give me cancer, they should go. The emotional part of my brain screamed BUT NOT ANYTIME SOON! Dr. Mandel and I talked for more than an hour, but my memory of the conversation is fuzzy. I remember my hands shaking. When I left he hugged me and promised to call as soon as he had the results.
I grew up in Missouri and my parents, my brother, and other relatives still live there. Each summer I take my kids back to visit. I was back home in Missouri when Dr. Mandel tracked me down to tell me the results: "Your test came back positive."
I did have the same BRCA2 mutation as my mother. Dr. Mandel did not let me off the phone until I assured him that I was okay and that I would make an appointment to come in with my husband for an extended consultation upon my return to LA. Although the news was not unexpected, it still took a few minutes to sink in. I told my mom immediately and she looked crushed. She had so hoped I would be spared.
Back in LA I went to see Dr. Mandel. I sat in his office and looked at the familiar photos of his wife and children, and some babies he had delivered. Even though I already knew the bad news, it was no easier to look at the harsh reality of the words on the page when he handed me my test results. I had lived for many years with the fear that I would get breast cancer in my early forties, as my mother had. But seeing the words "POSITIVE FOR A DELETERIOUS MUTATION" on paper almost made my heart stop. Dr. Mandel told me that these test results meant that my risk of getting breast cancer could be as high as 84 percent by age seventy, my risk for ovarian cancer as high as 27 percent by age seventy. Getting breast cancer just like my mother did was more than hypothetical-it was likely.
Now I had entered an alternate reality, watching the world through a camera lens, one step removed. Fear of breast cancer became my constant companion. I took my kids to the beach and watched them play in the surf. They were shrieking, jumping, diving, laughing, and generally having a fabulous time. I looked at my breasts in my bathing suit and wondered what it would be like without them. My chest felt tight, like a lead weight was sitting on it. It was hard to breathe.
When I opened my eyes each morning, breast cancer was the first thing to enter my mind. Unless I made a great effort, it was also the last thing I thought of at night. I needed a plan ... and I needed more information.
But I had entered a purgatory consisting of risk data that constantly shifted, differing medical interpretations, and a variety of opinions about what I should do:
Should I have my ovaries removed?
Yes, remove your ovaries as soon as possible; it will reduce your breast cancer risk by half. No, removing your ovaries at forty-two won't cut your risk in half; you should have removed your ovaries by the time you were thirty-five to get a 50 percent breast cancer risk reduction.
If I remove my ovaries, which would bring about surgical menopause, then what should I do?
Don't use hormone replacement therapy; it will just negate the positive benefits of taking out your ovaries. Even with hormone replacement therapy, your estrogen load will be approximately one-third of its prior level and it will still reduce your breast cancer risk-but the amount of the risk reduction can't be quantified.
What about my breast cancer risk?
Have mastectomies, it is the most effective way to reduce your breast cancer risk. Keep your nipples for the best cosmetic outcome. Don't keep your nipples; you won't get the most effective risk reduction if you are keeping the breast tissue around the nipples.
What about the fact that my mother's breast cancer was estrogen negative?
Removing your ovaries is recommended if you want to keep your breasts. This will probably, but not certainly, change your risk of estrogen-negative breast cancer as well as estrogen positive breast cancer. In short, this was a gray area.
What to do? I needed guidance. The experts-my trusted doctors-were giving me different and sometimes conflicting advice. As a lawyer, research is something I do well. And so I did loads of it. I took full advantage of the Internet and spent countless hours researching the BRCA genes, their implications for my cancer risk, and my options. I read everything I could get my hands on, mostly research studies but also news articles that profiled women like me who had faced these decisions. I culled information from many sources: articles and research studies available on Pub Med and other publicly available medical sources, the National Cancer Institute, the National Human Genome Research Institute, medical journals, various cancer centers, various breast and ovarian cancer organizations and foundations, and, of course, my doctors. I had appointments with all kinds of medical specialists: medical geneticists, genetic counselors, oncologists, cancer surgeons, breast surgeons, reconstructive surgeons, and my trusted gynecologist.
Excerpted from POSITIVE RESULTS by JOI L. MORRIS ORA K. GORDON Copyright © 2010 by Joi L. Morris. Excerpted by permission.
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Meet the Author
Joi L. Morris (Santa Monica, CA) practiced law in Los Angeles for thirteen years. She is now outreach coordinator for FORCE (Facing Our Risk of Cancer Empowered). She speaks often at cancer centers and community events to educate and inform women about the risks of hereditary breast and ovarian cancer.
Ora Karp Gordon, MD, MS (Tarzana, CA) is director of the GenRISK Adult Genetics Program at Cedars-Sinai Medical Center in Los Angeles, the largest clinical adult genetics program on the West Coast. She is also codirector of the Cedars-Sinai Gilda Radner Ovarian and Breast Cancer Screening Program for high-risk women and associate professor of medicine at the David Geffen School of Medicine at the University of California, Los Angeles.
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