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Tested for the breast cancer gene?
About this iReport
- Posted October 6, 2012 by
- lisa021366 Follow
Location
N. Dartmouth, Massachusetts
N. Dartmouth, Massachusetts
Assignment
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INCONCLUSIVE
lisa021366 heads a foundation for women that increases awareness, raises funds for breast cancer research, and provides women financial, social and emotional support that are undergoing a prophylactic mastectomy to reduce their risk of breast cancer.
- Jamescia, CNN iReport producer
In 2009, I was diagnosed with a phyllodes tumor;. an extremely rare and aggressive form of breast cancer that does not respond to chemo-therapy or radiation if the tumor is malignant. Fortunately for me, the tumor was benign. After two lumpectomies within 10 days at Mass General Breast Center, they finally had clear margins. The waiting game began.
At that time, Mass General was conducting a special study that involved women who had a history of breast cancer and pancreatic cancer in their family because of a link between the two genes. My breast surgeon at the time recommended that I take part in this study and have the BRCA gene test, since both of my grandmothers and two of my aunts had been diagnosed with breast cancer, and my father died from pancreatic cancer. While I realized I was the perfect candidate for the study, I was unsure as to how I felt about potentially learning that I was at high risk for two types of a potentially terminal cancer.
After more than 6 months of emotional struggles, countless hours of research and many tears, I finally agreed to participate in the study. I made the decision not only to take proactive steps to save my own life, but to help find a cure to this all to common disease. During the two weeks of waiting for the results, I had prepared myself for either result; a positive result, indicating a higher risk of breast and/or pancreatic cancer, or a negative result, which could finally ease my fears. What I had not prepared myself for was an inconclusive result;.which suggests there may be another undetected abnormal gene, other than the BRCA gene, that raises my risk of breast cancer and occurs less than 5% of the subjects.
After a little over one year of being completely consumed with fear, countless self exams, 3 completely different opinions from three different doctors and endless nights of research on the internet, I met my breast surgeon, Dr. Maureen Chung and my plastic surgeon, Dr. Pierre Michaud from Rhode Island. After consulting with them, I made the choice to undergo a prophylactic bilateral mastectomy and reconstruction at Women & Infants Hospital in Providence, RI, to reduce my risk of breast cancer from 90% to less than 5%. To me, my husband and our family, it was a no brainer!
Through all of my scouring of the internet, I realized there was very limited information available to women who make this very sensitive, controversial decision. There are a multitude of websites for breast cancer and breast cancer survivors; limited information for previvors, and everything you need to know about the BRCA gene. Unfortunately, there was nowhere for me to turn for emotional support from women who had undergone the same life changing experience as I and who had felt the same gut wrenching feelings that overwhelmed me. I needed to read stories of other women who struggled with this decision, who broke down the first time they looked in the mirror after the surgery, and who could express through first hand knowledge, what to expect and how they perservered.
Finally, after many months before and after my surgery, searching for others, I stumbled upon an online support group on Facebook. Who knew all I needed to do was type two powerful words: Prophylactic Mastectomy and there they were. A group of women who shared one thing in common, we all were proactively choosing to have a prophylactic mastectomy to save our lives.
While it has only been a couple of years since my surgery, it seems like a lifetime has passed. Fortunately for me, my surgery, reconstruction and recovery went amazingly well; thanks to the skill of my doctors, the support of my family and my newest “breast” sisters on our Prophylactic Mastectomy Facebook site. I will also be having yearly pancreatic cancer screenings. The original creator of our support group handed over the administration of this group to me and it has become my passion. We have close to 300 fabulous women from all over the world who have found comfort and support in our group; relieved to know they are not alone. They have found new friends with whom they can feel safe sharing their fears, their dreams, and their amazing journey.
I also have developed an amazing friendship with one of my “breast sisters”, Kim Emery (who also was diagnosed with the very same rare tumor and underwent her surgery at almost the same time as I underwent mine). We felt we had received a second chance and had been fortunate to control our destiny. Now, we needed to pay it forward.
In early 2012, we co-created the website www.MyDestiny-us.com, dedicated to these courageous women with a pleather of information documenting this journey from the beginning to end. We also co-founded the My Destiny Foundation. Our Foundation will provide financial support for those women who are undergoing prophylactic mastectomies and cannot afford the out of pocket medical expenses or do not have medical insurance. We will also provide financial support for breast cancer research.
Having this surgery has made me a stronger, more confident, healthy, cancer free woman who has found her purpose in life; to help other women who also are trying to make this difficult and controversial decision to create their own destiny!
At that time, Mass General was conducting a special study that involved women who had a history of breast cancer and pancreatic cancer in their family because of a link between the two genes. My breast surgeon at the time recommended that I take part in this study and have the BRCA gene test, since both of my grandmothers and two of my aunts had been diagnosed with breast cancer, and my father died from pancreatic cancer. While I realized I was the perfect candidate for the study, I was unsure as to how I felt about potentially learning that I was at high risk for two types of a potentially terminal cancer.
After more than 6 months of emotional struggles, countless hours of research and many tears, I finally agreed to participate in the study. I made the decision not only to take proactive steps to save my own life, but to help find a cure to this all to common disease. During the two weeks of waiting for the results, I had prepared myself for either result; a positive result, indicating a higher risk of breast and/or pancreatic cancer, or a negative result, which could finally ease my fears. What I had not prepared myself for was an inconclusive result;.which suggests there may be another undetected abnormal gene, other than the BRCA gene, that raises my risk of breast cancer and occurs less than 5% of the subjects.
After a little over one year of being completely consumed with fear, countless self exams, 3 completely different opinions from three different doctors and endless nights of research on the internet, I met my breast surgeon, Dr. Maureen Chung and my plastic surgeon, Dr. Pierre Michaud from Rhode Island. After consulting with them, I made the choice to undergo a prophylactic bilateral mastectomy and reconstruction at Women & Infants Hospital in Providence, RI, to reduce my risk of breast cancer from 90% to less than 5%. To me, my husband and our family, it was a no brainer!
Through all of my scouring of the internet, I realized there was very limited information available to women who make this very sensitive, controversial decision. There are a multitude of websites for breast cancer and breast cancer survivors; limited information for previvors, and everything you need to know about the BRCA gene. Unfortunately, there was nowhere for me to turn for emotional support from women who had undergone the same life changing experience as I and who had felt the same gut wrenching feelings that overwhelmed me. I needed to read stories of other women who struggled with this decision, who broke down the first time they looked in the mirror after the surgery, and who could express through first hand knowledge, what to expect and how they perservered.
Finally, after many months before and after my surgery, searching for others, I stumbled upon an online support group on Facebook. Who knew all I needed to do was type two powerful words: Prophylactic Mastectomy and there they were. A group of women who shared one thing in common, we all were proactively choosing to have a prophylactic mastectomy to save our lives.
While it has only been a couple of years since my surgery, it seems like a lifetime has passed. Fortunately for me, my surgery, reconstruction and recovery went amazingly well; thanks to the skill of my doctors, the support of my family and my newest “breast” sisters on our Prophylactic Mastectomy Facebook site. I will also be having yearly pancreatic cancer screenings. The original creator of our support group handed over the administration of this group to me and it has become my passion. We have close to 300 fabulous women from all over the world who have found comfort and support in our group; relieved to know they are not alone. They have found new friends with whom they can feel safe sharing their fears, their dreams, and their amazing journey.
I also have developed an amazing friendship with one of my “breast sisters”, Kim Emery (who also was diagnosed with the very same rare tumor and underwent her surgery at almost the same time as I underwent mine). We felt we had received a second chance and had been fortunate to control our destiny. Now, we needed to pay it forward.
In early 2012, we co-created the website www.MyDestiny-us.com, dedicated to these courageous women with a pleather of information documenting this journey from the beginning to end. We also co-founded the My Destiny Foundation. Our Foundation will provide financial support for those women who are undergoing prophylactic mastectomies and cannot afford the out of pocket medical expenses or do not have medical insurance. We will also provide financial support for breast cancer research.
Having this surgery has made me a stronger, more confident, healthy, cancer free woman who has found her purpose in life; to help other women who also are trying to make this difficult and controversial decision to create their own destiny!
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