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Volunteer Spotlight - Debbie Setuain & Christy Thacker

January 01, 2015

Volunteer Spotlight - Debbie Setuain & Christy Thacker

Debbie Setuain's Story

I always just "knew" I was going to get breast cancer. My mother was diagnosed with breast cancer at age 39 and died 5 years later at 44. I was only 13 and my sister, Mara, just 11 at the time of her death. In addition, three of my mom's sisters died of breast cancer at young ages. I grew up in a very small family that had a very large medical history of breast cancer as well as other cancers. After my mom died, my Dad was very persistent about frequent checkups. He took me to my first checkup with an OB/GYN. My mammograms began at age 30 and I had to have one every 6 months. When I was just 33, I found a lump in my breast. After a biopsy, it was diagnosed as benign (fibro adenoma).

During the next few years I had 3 more benign lumps removed. My life continued on and my two wonderful sons Alex and Michael were born. All the while, I kept having regular checkups and breast screenings. Unfortunately, I was then diagnosed with Multiple Sclerosis (MS). In 1996, I began medication to prevent MS attacks. Thankfully, my MS is under control as of today!

Fast forward to December 2009. Four months after my regular checkup which included a mammogram, ultrasound and complete physical exam, I felt a lump close to my sternum. I thought it would be another benign fibro adenoma. My doctor ordered a biopsy and a few days later I picked up the biopsy results and I read the word I did not want to read, interpret, or accept - "carcinoma." My good friend, Laura, took me to lunch. We talked and ordered a glass of champagne and hoped that this was just an early diagnosis and that with the appropriate treatment the cancer would be gone and I would be healthy again.

It was in June 2010 that I started my journey to health. I had my lumpectomy. My dear friend, Mary, helped me research specialists and I had my appointment with a wonderful oncologist. My appointment lasted 4 hours, and after reviewing everything about my treatment plan for triple negative breast cancer, there was one more piece of information my oncologist needed. We reviewed my family history. Genetic testing was recommended, and after many weeks of waiting, the results showed that I tested positive for the BRCA 1 genetic mutation. Given my cancer type and genetic results, my oncologist was able to prescribe the best chemotherapy treatment for me. My friends, Giovanna and Laura, were driving me to each treatment. Their company was very entertaining. We laughed, talked and were scared together. I could not have done it without them!

After my chemo treatment I had two options: radiation therapy or a double mastectomy with reconstruction. I decided to go ahead and have the double mastectomy given that the chance of recurrence of my breast cancer was extremely high. I also learned about prophylactic surgery to remove my ovaries and reduce my risk of ovarian cancer.

Throughout my cancer diagnosis and surgeries, my sons Alex and Michael were my two guardian angels. They were there for me every step of the way to recovery. I was able to count on all my friends and neighbors. I am fortunate that I was never alone. Even my personal trainer, Roger, was patient during our slow training sessions. He helped me keep my physical endurance and return to health. I am now 51 years old and a 3 year breast cancer survivor.

I became an outreach coordinator in South Florida in February 2011 and have made it my mission to share FORCE's information and resources with others. I am passionate about suggesting individuals can contact a certified genetic counselor, who can correctly counsel them on their own situation. I know from my own story that this information can save your life. I shared this information with my sister, Mara, and she was able to make informed decisions with her doctors on how to drastically reduce her risk of breast and ovarian cancer. I speak English and Spanish, and am available to help you!

Christy Thacker's Story

I was adopted at birth and grew up knowing I would always want to know where I came from. Most importantly, I wanted to know my medical history. When I was 21 years old, I found my biological mother's family and learned that she died from breast cancer at the young age of 31. My biological grandmother, aunt, and cousin were also diagnosed with breast cancer at a young age but were survivors. I started semi-annual breast cancer screenings at the age of 21. In 2012, I found my biological father and discovered his mother was also a breast cancer survivor. I felt like a ticking time bomb!

In July 2013, my routine breast cancer screening found two suspicious masses that required a biopsy. This was nothing new to me since I have needed several biopsies over the years to rule out cancer. However, this time the doctors seemed more concerned than usual and I was really scared. I was given wonderful news that once again it was "clear" but to repeat testing again in six months. At 37 years old, with two beautiful children, an amazing husband and my entire life ahead of me, I couldn't wait another six months and play with the horrible "C" word again. After a couple of days went by, I decided it was finally time to be tested for the BRCA gene mutation.

In August 2013, I was diagnosed with a BRCA1 gene mutation and that was also when I heard about FORCE for the first time. My lifetime risk of developing breast cancer was up to 87% and ovarian cancer was up to 44%. I decided to be proactive and on September 11, 2013, had a prophylactic double mastectomy with reconstruction to significantly reduce my chances of breast cancer to about 2%. It was the bravest, hardest, and smartest decision I have ever made, and I would do it again tomorrow if it meant being here and healthy for my family. The weight that has been lifted off of my shoulders is indescribable. I am so grateful for the knowledge I have gained, amazed at how empowered I feel, and am very happy to be alive. In January 2015, I plan to have a hysterectomy to reduce my chances of ovarian cancer.

I joined FORCE as an outreach coordinator for the South Florida area because FORCE helped me tremendously throughout my journey. I know FORCE will continue to help others and I want to be a part of it. I want to educate, empower, and support other families affected by this horrible disease so no one has to go through their journey alone.

Posted in: Volunteer Spotlight
Tags: FORCE , Volunteer

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