by Mimi LaPointe
Today is my 57th birthday. A birthday I shared with my mother, until she died at the age of 54 from metastatic breast cancer. Her mother, my grandmother, and her sister, my aunt, preceded her in death. All from metastatic breast cancer.
As a young adult I often wondered if her family had lived in a cancer causing “hot spot”, or just suffered from really bad luck. I am the youngest child, of two youngest children, so in other words I am the second to last member of my generation, in my family. Several others before me were diagnosed with and survived breast cancer. In 2005 my older sister was diagnosed with, and joined the ranks of breast cancer survivors.
One of my cousins, who works in the medical community and a breast cancer survivor, was among the first group of individuals to be tested for the “Breast Cancer ” gene. My oldest sister, who had never been diagnosed with cancer, was also tested. Both received negative results. No mutation. We were apparently a family with bad luck on the breast cancer front.
In the fall of 2013, my sister who was a breast cancer survivor was diagnosed with Stage IV Ovarian Cancer. Given our family history her doctors insisted she be tested for the BRCA (breast cancer/ovarian cancer ) mutation. Her results: positive for BRCA 1 mutation, or 5385insC Deleterious. Had she been tested in 2005, she would have been able to make choices to avoid her current diagnosis of Stage IV ovarian cancer.
I believe it was her choice to not have the testing; everyone makes different choices based on how they would chose to deal with the results. Medical knowledge has grown since then, celebrities (like Angelina Jolie) have stepped forward and shared their journeys, and knowledge had come to empower people to act instead of having to react, and to feel more in control. Dealing with cancer is such an out-of-control experience, the opportunity to be proactive is liberating for many.
Several weeks after finding out about my sister’s BRCA 1 + status I was sitting in the Northwestern Memorial Cancer Genetics Clinic having my blood sample drawn. Five days later I received the call that I was BRCA 1+, not long after I had the first recommended risk-reducing surgery. I had a Prophylactic BSO, and what is referred to as a “Staging Surgery” for Ovarian Cancer. In other words, I had my fallopian tubes and ovaries removed, along with a portion of my omentum, abdominal washings, and lymph nodes removed. If per chance the pathology report would show early ovarian cancer, I would be staged properly for treatment.
I was diagnosed with Stage 1 B Ovarian Cancer. Symptoms wouldn’t have developed for many months. I then had chemo, and will continued to be followed at Northwestern Cancer Center. Only 15 percent of women diagnosed with ovarian cancer are diagnosed in the early stages, prior to manifestation of symptoms. Late stage ovarian cancer is pretty much a chronic condition, with remissions, relapses, and many treatments. Had I been tested earlier, I would have never had to be a survivor of ovarian cancer, I could have been a pre-vivor.
A year has almost past, with really very little time to think, just time to act. At 56, I have lost the luxury of the time to stop, think, feel, then act. However, I have gained the opportunity my mother never had, to choose to prevent or diagnose early my cancer. Giving myself the best possible chance of living to share my life with my family, an opportunity my mother didn’t have.
On Feb. 24 I will celebrate my 57th birthday, Feb. 26 I will arrive at Northwestern Memorial Hospital to have a Prophylactic Bilateral Mastectomy. A birthday gift to myself. I am choosing to remove my apparently healthy breasts to make sure I have the best possible chance to meet my future grandchildren, and be a part of my family for years to come. There is a good chance that any abnormal cells found will be considered treated by the surgery, and no further treatment will be needed.
Thankfully the next generation of my family has been given the gift of knowledge, those who have tested positive have choices to make, instead of waiting and wondering if they will be next.
I consider this year similar to running a marathon, putting one foot in front of the other, pounding the pavement, and really wanting to stop or quit frequently during the process. My eye is on the prize, Feb. 27, and being here to see all that my mother missed.
I urge everyone to know what the risk signs are for having the gene which causes hereditary breast and ovarian cancer. To insist to be tested if appropriate, and to understand that this gene can be passed from both parents, not only mothers. If you are a candidate visit a Cancer Genetics Specialist, receive counseling, and know you have time, and been given the gift of choosing your path. There are many options, everyone deserves the opportunity to understand them, and proceed with what works for them and for their family.
Here are some clues you may want to consider genetic testing:
Two or more women in your family with ovarian or breast cancer, especially if the diagnosis was premenopausal.
Women who have both breast cancer and ovarian cancer.
Women who have breast cancer in both breasts.
Being of Ashkenazi Jewish decent.
Men who have had breast cancer.
Most important: remember, even if you would not do anything different with your life if you test positive, your test results could save the life of a sibling, a child, or a grandchild. The individuals like me, who were out there with a deleterious gene, but no apparent cancer. My sister may have saved my life, and those of our children.
Mimi LaPointe is a retired preschool director and teacher. She has been married to husband Mike for 24 years and has two children –Katie, 23, teaches Head Start in Chicago, and Andrew, 21, is a senior at the University of Illinois. She currently spends her afternoons with a fabulous toddler and preschooler, exploring the world of preschool art, books, and imagination.