I would like to introduce, Kristin my patient partner who has Cowden’s Syndrome.
I am living an amazing life. I have a MBA, I have run marathons, I have completed triathlons, I have lived in Europe, and I am a happy Mom to two beautiful children. I have an amazing husband, family and friends, and though life is challenging, I am as happy as I have ever been.Â My journey began late 2009 when I was diagnosed with FVPTC. Short for a follicular variant of papillary thyroid cancer. Â This diagnosis came as a shock after just returning from a short stay in Regensburg Germany. The Thyroid Cancer diagnosis was scary, however the doctors cautioned not to worry. Â Thyroid Cancer is the, â€œGood Cancerâ€ to get. Â Ha Ha. Â Has anyone heard that before? Â I am a rational fairly calm person, I thought to ok, no worries, and myself. Â Unfortunately, after two surgeries and radiation treatment for the thyroid cancer, I couldnâ€™t shake the feeling that something wasnâ€™t right with me. Â A couple of years prior to my Thyroid Cancer diagnosis my Mom was treated for breast cancer. Â At that time I decided I would be brave and push to get my first Mammogram. Â I was shocked and completely overwhelmed when that mammogram resulted in a biopsy. Â I believe I was 32 years old at that time. Â Again, the Doctors encouraged me not to worry. Â I think I heard â€œdonâ€™t buy trouble, more often than not.â€
Fast forward a couple of years and my Mom was diagnosed with her second round of breast cancer and I had undergone another scary mammogram and biopsy. Â Red flags were flying for me at this point. Â I decided I would do a little research trying to understand if there were any link between Thyroid Cancer and Breast Cancer. Â In my research I googled and found Cowden Syndrome or (PTEN HamaratomaÂ Syndrome)- characterized by multiple non-cancerous, tumor-like growths called hamaratomas and an increased risk of developing certain cancers. Thyroid, breast, endometrial, kidney, colon and skin are cancers known to be associated with Cowden Syndrome. Â As I read and learned more about this disorder I realized that several family members and I met allot the criteria for Cowden Syndrome. Â I discussedÂ this at my local cancer center and was told that I might be on to something and that they would send letters to my doctors. Â I called to follow-up with my cancer center about the letters and learned the ball was dropped. I was disappointed, however I was introduced to the most amazing genetic counselor, Carla. Â She was warm and encouraging, and along with the head oncologist, encouraged me to enroll in a Cleveland Clinic study. Â She said knowing if I had this syndrome would help in my future healthcare, perhaps that of my family and hopefully other families as well. Â I trusted her and decided that it was best to enter this study and several months later we had our confirmation that I do have Cowden Syndrome and what that means for me today. Learning that I have this genetic disorder and what that means for me has set the wheels in motion for an incredible ride. Â Last February a letter from the Cleveland Clinic notified us that several of my cancer risks had been re-adjusted. Â The most concerning to me was an 85% lifetime risk of breast cancer that was once thought to be 50%. Â My husband and I visited several oncologists, as well as other physicians. Â All of the doctors advised that a prophylactic Bilateral Mastectomy was something we should consider. Â After a lot of thought and prayer, I went through with my bi-lateralÂ mastectomy surgery onÂ Â Â Nov 7, 2012 and I had my exchange to implants Feb 1, 2013. Â I canâ€™t describe the sense of peace that came over me with my surgeries. Â I had amazing support from family and friends and I truly feel like my surgery was in Godâ€™s plan for me. Â My risk for breast cancer is now very low and I can honestly say I have no regrets.Â I feel blessed to have knowledge of my genetic makeup because it allows me to be proactive with my health.Â I also strongly support advocating for your health and listening to your instinct.