There are so many stories on FORCE and so many members willing to share their experiences. We hope these profiles can help you connect with our community and get advice from people like you!
I'm a previvor who has undergone a prophylactic double mastectomy and is doing surveillance on my ovaries. I have a family history.
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I am 39, happily married to an amazing man and we have three children.
In 2006 I got a phone call from my mother and she told me she had breast cancer. Shortly after she also told me she had genetic testing and that she was positive for the BRCA1 del ag 187 mutation. She told me to think about getting testing but not to stress about it. I was 30 years old, married but with no children. I had plans to have children. The advice I was given at the time was to wait till I was going to do something about it. So, that's what I did. I waited until after my third child was born in 2011. Lucky all along that nothing had come up because though I did the usual surveillance, it was not the type that should be done by a BRCA mutation carrier.
In June of 2013 I finally had passed enough time since breast feeding my youngest child and decided to pursue genetic counseling. I saw a counselor and based on my family history they suggested I test for the the BRCA mutations...this is my family history in a nutshell....
Great Grandmother - died of ovarian cancer
Great Aunts - two of them both passed from cancers in their 60's, one of ovarian and one of breast
My mom's first cousin - passed of breast cancer in her 40's
Another first cousin of my mom - breast cancer survivor from a cancer she got in her 40's
A cousin in my generation had breast cancer in her 20's
My mom had breast cancer and is a survivor in her early 60's
Needless to say, this warranted me being tested as well and I was positive.
In my generation 5 women including me have tested positive for the BRCA mutation
Throughout the summer of 2013 I researched my different options for preventing cancer and made the decision to undergo a prophylatic double mastectomy. After interviewing a couple different teams of surgeons I chose my team and set a date for November 5, 2013. From the moment I found out about my gene mutation there was no looking back and no fear. I knew I would fix my body. So on November 5th of 2013 I had my breast surgery. I chose the double mastectomy with expander reconstruction. It was painful but I recovered well. I had about 6 expander fills until around end of January and had my implant swap done in March.
My journey with my breasts did not end until a week before my year anniversary of my surgery with the last touch. I had nipple reconstruction done in a September and at the end of October had aerola tattoos done. This is when I finally felt good. My boobs feel great and I am happy that they won't be a threat to me anymore.
But....my journey is not over, I am now doing surveillance on my ovaries and will address my options for preventing ovarian cancer this year.
I had a couple hard moments during my journey. The first was the pain I experienced directly after my surgery...there was a lack of communication and somehow I did not get the right pain medication. Once that was solved I was happy.
The second part that was hard was when I had the nipple reconstruction prior to aerola tattoos. It was the first time that I felt scarred and disfigured...what I can say now is the initial look after nipple reconstruction is not the end result but not knowing that I cried hard.
The third part of my journey that has been difficult has been my decision with my ovaries. I have had a lot of fear of menopause and that has stalled me taking any majors measures to get rid of them or stop their hormone productions. I am still struggling with this but know that as I near 40 I will have to make a decision.
I would not change a thing. I am all about feeling healthy and limiting my stress. Knowing that I could wake up one morning with breast cancer made the prophylactic route easy for me. And that same thinking is leading me towards removing my ovaries as well.
I love FORCE. It has helped me tremendously from the first meeting with a genetic counselor. At that meeting I received the info about FORCE and read the literature. As soon as I knew I was positive with the BRCA mutation I reached out to the people in my area and got involved. Sandy Cohen, the Senior VP of Volunteers Program helped me with my questions and referred me to amazing people, such as Jill Oster, an outreach coordinator with the Philadelphia group. These people and many others have been supportive throughout this journey. They have shared information, told me about different options and included me in this world of people who want to battle Hereditary breast and ovarian cancers.
Something special about my journey...I have an older brother and older sister. My brother is negative and my sister tested positive for the same gene mutation. My sister chose the same prophylactic route as me. She lives on the West Coast and I live on the East Coast. Within 3 days of each other we had the same type of surgery.
To had your sister...and mine is my best friend, going through it with you made a huge difference. We were able to compare, share and help. This made all the difference. Though I must say I wish she didn't have to go through and I know she wishes the same for me.
There is always someone to lean on during these times.