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Kristen’s Story (Cowden Syndrome)

Kristen's Story (Cowden Syndrome)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.

Submitted 10-8-2012

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.

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One comment

  1. Rodri

    are true words. In fact many people are araifd of things, she take distance of it or ignore them. It will only become interesting for them, when they themselves are affected or someone in my family. It for many years a phenomenon, we’re watching this as well in the medical area.. I had never the fear of death, he is part of life, like the birth, growing older. I was set always positive in my mind, I know many take me the evil, I don’t say often enough, I’m feels not well today.But I’m not a person who complains like, I know it’s part of my illness and to each day without pain, is a day that I enjoy in my life. As long as I’m on this earth walk, I want to have so much beautiful days with family and friends together. That’s my only wish..

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