My story began in June of 2009 when I was about to find out that the word ‘genes’ can mean more than something you wear on the weekends. The path that I dreamed of when I was a young college student did not turn out exactly as I had planned. I probably seem normal to strangers walking down the street, but my journey has been anything but typical for a young woman.
The symptoms that would lead me to a startling discovery started right before my 29th birthday. I had long, heavy periods for months that were blamed on generic birth control or hormones. After several months of no answers, my doctor found a polyp in my uterus. With my mother’s history of endometrial cancer, I knew this could be serious. He had me wait a few months, but by that December the polyp and my conditions grew worse with three weeks at a time of painful bleeding. My surgery was scheduled for February 2010. The words of my doctor two weeks later will forever be burned into my brain. My mind went numb as my doctor told me that he was shocked because the results came back that the polyp was covering my entire uterus and it was endometrial Cancer.
Despite my shock and fear, I immediately sprang into action and became my own best advocate. I created a binder, did research, and tried to understand how this could be happening to a 29-year-old. My doctor ordered a CA125 test and it came back negative. I was placed on high doses of progesterone being that I was childless at age 29 and wanted to consider the preservation of my eggs to have a child in the future. The cancer was determined to be Stage 1 and, I decided to get a second opinion to be sure and took my biopsy samples across town (in a brown paper bag no less!) to UPenn Hospital in Philadelphia PA. They performed their own biopsy and determined the cancer was advancing. Time would not allow me to preserve my eggs and I needed surgery as soon as possible. I was devastated by the harsh reality that I would not be able to have children. For many years watching commercials with babies had me leaving the room since it was emotionally hard.
As my events were unfolding, my mother discovered she had a rare genetic disease called Muir-Torre Syndrome (a form of Lynch Syndrome). She found out she had a 50% chance of passing this disease onto her children. I was tested immediately, and it came back that I too possess the gene mutation explaining my recent cancer diagnosis. I met with the genetic doctor and began educating myself. I began a preventive care regimen that I must follow for the rest of my life. My genetic mutation was explained as hiccups or misspelled words in my genetic repair cells creating a high risk of many cancers. This includes an increased risk of developing colon and uterine cancer, and a greater risk of others such as the stomach, bladder, urinary tract, prostate, liver, ovarian, and various skin cancers.
I was now scheduled for a full hysterectomy two weeks before my 30th birthday on July 16, 2010. This included my fallopian tubes, ovaries, and uterus. It was clear that I would not have a celebration that I had looked forward to all year. The moments before heading to the operating room will stay with me forever as tears rolled down my face I said goodbye to my parents and my supportive husband. After the surgery, I had many complications. I then found out a couple of weeks later from a nurse that I also had Stage 1 ovarian cancer in my left ovary. The news was hard to digest, but thankfully I did not need to have radiation or chemotherapy due to both cancers being separate. I was very lucky in an unlucky situation.
Christa Schuckers Suchak
I am now 10 years cancer-free and just turned 40! I cannot express how proud I am of myself to have come so far. Although I did not have treatments, I have experienced many side effects that have challenged me along the way including chronic stomach pain, instant menopause without an option for hormone replacement until last year, weight gain, financial burdens, and the inability to have children through natural birth. I require yearly endoscopy, colonoscopy, and urine cytology testing along with checkups from a genetic dermatologist who screens me for skin mutations that can occur with Muir-Torre Syndrome. The awareness of Lynch Disease and ovarian cancer is very important to me. I’ve been involved in NOCC walks, seminars, and sharing my story with others in hopes of making a difference. I want to support not only ovarian, endometrial, and Lynch education, but for all cancers and diseases. I know my illness will always be a part of me, but it does not define who I am. Who knew how much a pair of genes would change my life! The best advice I could offer someone facing illness is to stay positive no matter how much it tears you down, fight for the life you deserve, and please be pro-active because no one at any age, class, or race is invincible to cancer, disease, and illness. Each day and year is a gift – what a year of milestones!