Patricia S. Blumenthal: In Her Own Words
March 12, 2013 | Patricia Blumenthal
The phrase “breast cancer” has been part of my lexicon for as far back as I can remember. As a young child, I heard the phrase when my mom told stories about my great-grandmother. I remember hearing that Mama Jacobs “nursed with only one breast.” I gleaned from the adults around me that “nursing with only one breast” was quite an unusual feat. This tidbit of information typically surfaced when my extended family was together for a happy occasion. So, while I realized from a young age that breast cancer was a serious disease, I didn’t associate it with a horrible outcome. It was just a part of our family.
I knew also from general conversation that Mama Jacobs’ daughter, my grandmother Mimmi, had been diagnosed with breast cancer when she was in her 50s. But I saw Mimmi regularly, and though her breast surgery left her physically scarred, from my vantage point, she was just my grandmother living a seemingly nice life. Breast cancer was, again, just part of our family.
When I was away at college, my mom was diagnosed with breast cancer. She was 48 and this was her second cancer diagnosis – two years earlier, pathology reports after a supposedly routine hysterectomy came back showing a “uterine sarcoma.” With her breast cancer diagnosis, Mom opted for a modified radical mastectomy, choosing to have her second breast removed as a prophylactic measure. But the doctors refused to remove the entire breast, insisting on leaving part of her tissue intact. What I remember most about this period is the eight-hour reconstructive surgery and the grueling recovery that ensued. I remember my mom “crawling up the wall” with her arm, trying to get an inch higher each time. She was fierce in her determination to get back to her routine. I don’t recall talking about breast cancer much – and I don’t recall being particularly terrified. Once again, breast cancer was just part of our family.
However, even during these years, I routinely read articles about breast cancer. I could not ignore the facts: three generations of women in my family had been diagnosed with breast cancer. While I certainly did not worry that I would suddenly be diagnosed, I was far more aware of breast cancer than were most of my friends.
About this time, my doctor recommended that I have a baseline mammogram, explaining that because of my family history, I should be watched closely. While most women began mammograms at age 40 or 50, I was only 25. Just after this conversation with my doctor, I found a cyst on my breast. Worried, I came to Nashville so my mom would be with me for what I feared would be a breast cancer diagnosis. Fortunately, it was merely a benign cyst.
I met Eric, my future husband, and we married two years later. I was 27, he was 25, and we were two young and successful professionals who forged an easy and happy married life. After the birth of our first child, my mother was diagnosed with her second breast cancer, this time in the tissue that remained in her “good” breast. Mom was scared and angry, and she endured a third breast surgery with reconstruction. As always, she followed doctors’ instructions to the tee and recovered with grace and determination. Watching her, I realized that cancer was intimidating and scary…but getting through tough surgery was doable.
At some point during this time, she told me that having breast cancer made her live every day to its fullest. My mom does this naturally – she is always busy and rarely stays still – but living as a breast cancer survivor put a different spin on her life. Mom worries about her health and about cancer specifically, but she also knows she is lucky. She lives a full and active life and, she never lets breast cancer get in the way. As was true when I was younger, breast cancer is simply part of her life, and therefore, part of our family.
Meanwhile, my grandmother Mimmi was diagnosed with ovarian cancer, and after chemotherapy she succumbed to the disease in the same year that she lost her husband of more than 50 years. This had been a most difficult year but we recognized that my grandparents had lived long and fulfilling lives, and that we grandchildren had the benefit of knowing them well into our adult lives. Yes, cancer was a devastating disease and had taken the life of my grandmother, but I was not yet enveloped with fear.
Eventually, two breast cancer genes were identified and the concept of hereditary breast cancer had come into the public sphere. As the idea became more widely discussed, I wanted to learn more. I read what I could understand, I spoke with my doctor, and I made my way to the genetic counseling office at the Vanderbilt Breast Center. Together, my mom and I listened for nearly two hours as the two kind and wonderful genetic counselors explained the basics of genetics to us. We learned that through a simple blood draw, we could know whether we carried either of the breast cancer genes.
But that was the easy part. Before deciding whether to participate, we needed to consider possible ramifications. The genetic counselors sent us home loaded with information and full of emotions that I had not yet really considered. We had given the counselors a detailed family history from which they developed my “pedigree,” a family tree of cancer. Seeing the multiple generations of diagnoses on paper was frightening. The counselors told us that, based on the combination of so many female cancers (as well as several additional cancers) on my mother’s side of the family and our Ashkenazi Jewish heritage, it was highly likely that there was a breast cancer gene at play in our family.
I understood that if my mother carried one of the breast cancer genes, my sisters and I each had a 50 percent chance of inheriting the gene.
The genetic counselors suggested that I consult with the relatively new online community called FORCE (Facing Our Risk of Cancer Empowered). I had never been a member of an online community, but I desperately needed to speak with women who were confronting issues of hereditary cancers.
FORCE quickly became my lifeline. I spoke with women who had chosen not to get tested and with women who had been tested. I met women who were gene-positive and gene-negative. Most important, many of these women were remarkably similar to me: well-educated, young, Jewish, and scared. They were open and honest and smart, and they were dealing with unsettling and frightening issues.
My husband listened and read, and he was supportive of my need to understand the possible choices and outcomes. We wrestled with two major questions. First, would our health insurance cover the cost of testing and surgeries we might opt for – and would I then have a “pre-existing condition,” which would make me an insurance risk for the rest of my life? I was only 39 and I was terrified that insurance companies would discriminate against me should I be found gene-positive. Second, if I did carry the gene, what would we do about it? There were two choices: maintain a rigorous surveillance schedule of frequent mammograms and CA-125 tests, or opt for prophylactic surgeries. For me, the prospect of a cancer diagnosis was far more frightening than surgery – I had seen my mom get through tough surgeries many times and I was confident that I could do the same.
After weeks of nearly constant research, we opted for gene testing. Not surprisingly, my mother tested positive for the BRCA2 gene. My sisters and I were each tested, and while they tested negative, I tested positive. Despite being inordinately prepared and educated, hearing and reading the test results took my breath away. The other shoe had finally dropped and the prospect of cancer hit me square in the face. Cancer was truly part of our family and for the first time, I was intimately affected by it.
I came home armed with information, but focused only on two numbers: 84 percent and 27 percent. Because I carried the BRCA2 gene, I had an 84 percent chance of being diagnosed with breast cancer by age 70, and I had a 27 percent chance of being diagnosed with ovarian cancer. Each of these numbers was staggering. A woman without this gene has a 7 percent chance of being diagnosed with breast cancer and a 1 percent to 2 percent chance of being diagnosed with ovarian cancer.
As I considered my options, I knew several things. First, I had three beautiful children (then ages 3, 6 and 9) and I desperately wanted to be part of their lives well into the future. Second, I was happily married and I wanted to grow old with my husband. Third, we had no intentions of having more children, so I no longer “needed” my breasts for breast-feeding or my ovaries for childbearing.
I sought the counsel of several local breast surgeons and plastic surgeons. I spoke to the women of FORCE daily, listening to others’ stories. I consulted Gilda’s Club of Nashville – they had resources for both my brain and my soul. And spending a bit of time at Gilda’s helped keep my situation in proper perspective.
Perhaps the most important conversation I had was with my dear mother.
“Mom,” I said, “do you think I’m nuts for considering prophylactic surgeries?” She looked at me and said, “Tricia, I would do anything to not have heard the words ‘You have cancer.’ Those are the scariest words I’ve ever heard, and I hope you never have to hear them. So, no, I don’t think you’re crazy. I would do the same thing.”
Because I now feared the diagnosis of cancer in a haunting way, I was suddenly not concerned about my female body parts. Asking Eric to go along with me for this unknown journey was asking a lot, but he was fully supportive. While we both feared the unknown, we understood fully that opting not to have these surgeries meant a life full of worry – and we knew that, for us, that was not really an option.
And so it was that at age 39, I had a full hysterectomy and six weeks later, at age 40, I had a double mastectomy, followed 4 months later with reconstructive surgery. The surgeries themselves were bearable; the breast surgery was much more difficult both physically and emotionally. One of the hardest moments of my life was waking up from that surgery, not being able to move either arm even 1/100th of an inch, and realizing that I no longer had breasts. My husband, father, mother, sisters, cousins, and many close friends were all incredibly helpful during those tough weeks.
But many people I knew thought I was a bit crazy. Some were simply ignorant about the statistics and made equally ignorant comments. Others thought I was “overreacting.” The medical community was certainly not unified in its recommendations for women who carried the BRCA genes. One prominent local breast surgeon I consulted told me I was “crazy for wanting to destroy my life” by having prophylactic mastectomies.
It’s been 11 years since my surgeries – and the overwhelming emotion that I have experienced and continue to experience is gratefulness. I am grateful for the decades of scientific research that led to the discovery of the breast cancer genes. While my surgeries are not guarantees, my risk of a breast or ovarian cancer diagnosis is now negligible. I have seen friends die at young ages of breast cancer. I have witnessed close friends whose children have been diagnosed with cancer. I have watched as colleagues bravely faced cancer diagnoses. I am profoundly grateful that I have had the options that I did and that I do not live in daily fear of a cancer diagnosis.
Still, to ignore the emotional and physical ramifications of my decisions would be akin to sticking one’s head in the sand. I undergo more “routine” tests because of my gene-positive status. Whenever the choice is to “watch and wait” or to “test,” I will always opt for “test.” Being BRCA2 positive means that I have somewhat elevated risks for other kinds of cancers, but these risks pale in comparison to the original 84 percent and 27 percent risk of breast and ovarian cancers. My surgeries offered no panacea, but still I am eternally grateful.
The most difficult part of my BRCA2-positive status is that each of my three children has a 50 percent chance of inheriting this gene. While the concerns for my daughters are different than those for my son, it will be important for all three to share their genetic history with appropriate physicians in the future. Both men and women can carry this gene and pass it to their children – it is not a female-only medical issue. I will strongly encourage my children to consult their own doctors, seek the assistance of qualified genetic counselors, and most importantly, to wait for many years to be tested. I am especially grateful that during my younger years, I was blissfully unaware of the possibility of carrying a breast cancer gene. Knowing that my children will never enjoy those years of blissful ignorance is particularly difficult.
My overarching hope is that science will advance so that women who elect to be tested and who are gene-positive have less draconian choices than I did. I hope that my children will be writing articles about breast and ovarian cancers being part of their past heritage, and not part of their families. In the meantime, I will continue to be grateful and to follow my mother’s example of living life to its fullest.
Sorry, the comment form is closed at this time.
Thank you for sharing this honest and intelligent account of your journey. Your thoughts are a gift to others in this situation.
Comment by Carol Whaling — March 13, 2013 @ 7:42 am
Cancer is mostly family hereditary. But the innovation and development of research and means to cure cancer is progressing.
Comment by breast surgeons toronto — March 20, 2013 @ 9:52 pm
Thank you for this beautifully written, articulate piece You did a great job of intertwining facts with emotion. As a BRCA1 positive woman who has a large family history of cancer and has also undergone prophylactic surgeries, I relate to so much of what you have said here. XOXO
Best to you!
FORCE Palm Beach County Outreach Coordinator
Comment by Amy Shainman — March 21, 2013 @ 9:56 am
My three daughters and I are all cancer survivors. They are BRACA Positive, I was not tested. Thanks for the information
Comment by Susan Malmay — March 21, 2013 @ 12:45 pm