My medical journey started at a young age. I learned only just recently how the pieces of my puzzle fit together. My mother was diagnosed with breast cancer for the first time in her 50’s. I decided I would push for an early mammogram, never thinking that I would have trouble. My mammogram led to an ultrasound and a biopsy. The doctor’s were happy to report that everything was okay, and benign. I was told that I had fibrocystic breast disease and fibroadenomas, which was nothing to worry about. I accepted their guidance, though I still had a nagging feeling. Three year’s after my first mammogram scare I was diagnosed with papillary-follicular thyroid cancer. The tumor (nodule) measured about 4 cm. I was being evaluated by an endocrinologist. I had at least 3 benign needle biopsies prior to being diagnosed with thyroid cancer. It wasn’t until my endocrinologist suggested that we remove half of my thyroid that we found cancer.
I decided to take charge of my healthcare. I researched to see if there was a link between thyroid and breast cancer. This is the first time I heard about Cowden Syndrome or PTEN hamartomas syndrome. When reviewing the data it was clear to me that I met a lot of the criteria for CS: lipoma, large head size, fibrocystic breast disease, thyroid cancer, skin changes were just to name a few. I brought these things up to a couple of doctor’s and they laughed it off and said I worry too much. I refused to let my concern go and finally met with a genetic counselor who listened and suggested I enroll in a Cleveland Clinic PTEN study.
Eight month’s later I had the result’s and learned that I was positive for the PTEN gene mutation and that I have Cowden Sydrome. I was right. I learned at the time that my risk for breast cancer was 50% and that I also had risk of developing colon cancer, thyroid cancer, kidney cancer, endometrial cancer, and melanoma. My race has turned into a fight. My risks were adjusted last February, my risk for breast cancer is now 85% lifetime according to recent data. After several biopsies, mammograms, MRI’s and ultrasounds, I’ve decided to beat cancer and fear. I will have preventative mastectomies with reconstruction. I have young children and won’t live in fear. I am a survivor and by the grace of God will be a survivor too. My surgery is scheduled for November 2012. Next August I will cross the finish line at the worlds largest relay race with some amazing women. I want everyone to know that cancer does not control us. Believe you can beat disease and enjoy life to the fullest as it is a gift.
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.