Mary Survived Ovarian Cancer and Knows the Value of Genetic Testing
I never had a chance to meet my paternal grandfather, Eric. He was a handsome truck driver just like my Dad. In 1950, Eric had surgery to remove colon cancer at age 39. The operation went well and he was able to return to work. But the cancer returned eight years later and he lost the battle at 47 years old, leaving my grandmother with five boys and two baby girls. Four years later, Eric’s sister, Myrtle, died from colon cancer at the very young age of 40.
The summer before my freshman year of high school, my Dad also was diagnosed with colon cancer. I didn’t realize then that my Dad was the same age when he was diagnosed as my grandfather was when he passed away. I now know that it was a very scary time for him. Five years later, it was discovered that my Dad had a second type of cancer: prostate. He had his prostate removed, but 20 years later the cancer returned. This time his cancer was treated with 38 radiation treatments. In January, 2014, my Mom noticed an abnormal spot on my Dad’s back. His dermatologist sent him for a biopsy, which confirmed more bad news – melanoma. This was his third cancer, but yet again, it was caught early. As a survivor of three different types of cancer, I would say that my Dad has superpowers.
Another big shock that hit our family was losing my sweet cousin “little Eddie” to colon cancer. He was only 27 years old! How could colon cancer take the life of someone so young? It was heartbreaking to watch my Aunt Janice and Uncle Eddie bury their oldest son.
After little Eddie died in 1998, my family started to consider that we might have hereditary cancer. Joking around, we all called it “The Nisbet gene,” but we didn’t even consider genetic testing back then. And we certainly were unaware of Lynch syndrome, which we now know is a hereditary cancer syndrome that puts people at higher risk of several types of cancer including colorectal, uterine, ovarian and stomach.
Most of my family members were getting regular colonoscopies. We thought that was the only action we needed to take. My Uncle Eddie had a colonoscopy every two years, but even that wasn’t enough. He developed colon cancer between screenings when he was 54. Fortunately, it was caught early and like my Dad, he is still a survivor.
Just to throw a little more variety into the mix, my aunt was diagnosed with breast cancer when she was 49 and my cousin had thyroid cancer at the age of 44. Our family sign for the American Cancer Society’s Relay for Life event was very colorful with the large variety of ribbons representing the different types of cancer we had experienced.
As time passed, a few family members became interested in genetic testing. With the addition of all the other types of cancer, it was clear that we needed to worry about more than just colon cancer. At that time, cancer survivors received genetic tests before others in their families who had not had cancer. After several discussions with my Dad and uncle, they both decided they did not want to be tested so the idea of genetic testing was dropped.
In 2007, right after I graduated from college, I found a lump in my lower abdomen. As a new hire at my first physical therapy job, I had to wait three months for my health insurance to start. During that time the small lump grew to the size of a grapefruit. Not knowing what it was caused me to obsess and worry excessively. I pleaded with my gynecologist to order an ultrasound, and it showed that the large lump was an ovarian cyst. I initially felt relieved, and we scheduled blood work and a physical exam as soon as the insurance was active. At that first appointment we discussed the surgery and all the different possible scenarios. He said I would most likely lose my right ovary. Not a problem, I thought, I have two. He said that, if it was cancer, he would do a full hysterectomy. Not a problem either, I thought, I have one perfect son and that’s all I need. I was comfortable with the game plan, and he sent me to the lab for blood work.
Two days later he called me at home after dinner. The test showed that my CA-125 level was elevated, meaning that there was a good chance I had cancer. During surgery, it was discovered that inside the giant ovarian cyst was endometrial adenocarcinoma of the ovary. When I found out I had ovarian cancer, my first thought was about how to tell my mother and whether she would be OK with the bad news. Much to my relief, she took it very well. After supporting my father through several surgeries, she has become a super caregiver. Two weeks after surgery, I started chemotherapy. I continued to work full time during my six treatments in order to maintain my health insurance. My oncologist also recommended that I have genetic testing since I was only 36 years old and was much younger than the average woman who is diagnosed with ovarian cancer. But I was focused on surviving each chemo treatment and so put genetic testing out of my mind.
After my one-year survival celebration party, I was able to put the treatments and surgery behind me. I started to think about my future and what steps were needed to ensure my health. My oncologist brought up the subject of genetic testing again, and this time I said yes. At the time, I didn’t think that the test would have any effect on me — the reason for my testing was for the benefit of my son and everyone else in the family. But it did have an effect on me.
During the unveiling of my positive test results, my genetic counselor seemed to be holding her breath and waiting for my reaction. I knew in my heart that I had inherited a gene mutation so the results were not a shock. Trying to see the silver lining in this gray cloud, I asked, “Will my insurance company pay for new boobs?” Relieved that I was handling the news well, she burst out laughing. The gene mutation that my family has is MSH2, which does not cause breast cancer. My consolation prize is an annual colonoscopy and a certificate that will allow all of my family members to be genetically tested.
Because I have been tested, anyone in my family also can be tested. Seven members have been tested so far. My two aunts both tested positive. Shortly after receiving their test results, they both had prophylactic total hysterectomies. Without this testing, they could have been victims of ovarian cancer, which has been called the silent killer. Knowing that my positive test results saved my aunts from this deadly cancer gives purpose to the suffering I went through during surgery and chemotherapy. I don’t think “why me?” Instead, I look back and say I’m glad it was me. I am proud to be the one who opened the door for the rest of my family to be tested. Several family members have benefited from the testing. One of my cousins tested positive and is now getting an annual colonoscopy and four others have tested negative.
Someday, I will convince my two siblings and my son to be tested because I am convinced that knowledge is power. Knowing that I have an increased risk for cancer puts life into a different perspective. I am thankful that I am healthy. Every morning I wake up and think about how I am going to spend my energy for the day. I choose to use it to spread happiness, exercise to keep myself healthy and have fun with my family. Life is too precious to spend your energy on anger or negativity. And it’s not just about knowing for yourself, it’s about keeping the next generation healthy and safe as well.