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My journey has just begun (Jan 2012)
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My name is Jennifer... I am a married mother of 4 boys (12, 11, 9 and 3) who currently resides with my husband, children and 2 dogs in NorthWest Arkansas... I found out two weeks ago, I was BRCA2 positive.. My story ...
My father was married a few times... He and his first wife had two children.... They are 10-14 years older than my brothers and I (who are a result of his second marriage to my mother). . Both my father and his first wife were of eastern Jewish descent. Around 1978, when I was 3, my father was diagnosed with melanoma. This was also the year that his mother (my paternal grandmother) passed away from ovarian cancer. My dad had his tumor removed and lived on for years... Sadly, in 1992, he was diagnosed with pancreatic cancer as well as kidney cancer. He was sent home to Florida from the Dr's in NY to die. He made it for over a year and eventually passed in Aug of 1993. I was 17 years old.
My father's first wife, started putting all the pieces together in 1995 and started to research my father's cancer, as well as his mothers. She began to urge her daughter, my half sister to get tested. At her urging my half sister went for the test and got a confirmed positive result for BRCA 2. Her son was than tested and he too was BRCA2 positive. She than tested herself for BRCA and was negative hence giving us the conclusion it went back to my father...
A few years back, my half brother (as a side note, my half siblings and my family are not close and I have not seen them really since 1993) reached out to me via face book and told me about the gene and urged me to get tested. I ignored the information since I thought he was nuts. Why would I want to know I could get cancer? Even if I teste negative, I could still get cancer... and even if I was positive, it didnt mean I would not get cancer. I had NO IDEA what the statistics and predisposition statistics were.
I had a discussion with my Dr over the summer and was giving her family health history relating to my fathers cancers so I could have the best care possible... When I told her there was thought my Dad could have had BRCA (recall he wasn't confirmed and since I wasn't close with my 1/2 siblings I didnt have details) she urged me to get tested. Since at that point I thought i was positive anyways, taking a test would only confirm a negative.... so what did I have to lose? I got all my life insurance in order to ensure I wouldnt have issues post test and scheduled an appt. I scheduled the test on Dec 22 (trying to squeeze it in before the new deductible year). I spoke to the counselor who really only used the time we were together to see if I should have the test. I of course did not know the specific gene mutation. THe counselor advised if I could let her know within 24 hours, they could do a single site test.
On my way out to the car, I sent a facebook message to my half brother asking if he had the gene mutation site information. He Immediately wrote me back getting me back in touch with his mother. She called both myself and my mother within 20 min and advised it was 6174DELT.
3 weeks passed and the phone call came. I was in my office, by myself and was told I was BRCA positive. I was advised I should set up an appt with the oncologist, end of call. I was devastated for about 4 minutes. but than realized the chance I had to combat this disease that others did not have. I cried with my Mom (ps - her mom also died from ovarian cancer in 1977 although I was told it was not of a genetic nature) but than took a strong hold on what I needed to do. MY father's first wife sent me PREVIVORS which I read in 2 days. It opened my eyes... scared me, soothed me, prepared me...
I know what I have to do...When I meet the Dr on 2/3 I am going to advise I want the hysterectomy and a masectomy. while this scares me greatly, what scares me more is not seeing my children grow up, not having my husband by my side, having my family watch me get sick before it is my time to go. I already underwent breast augmentation in the past in 2001 (not for medical reasons but because of breast assymetry and formation after nursing) and had very little breast tissue to start off with... I am more concerned with the aftermath of a hysterectomy, and whether or not I will find a surgeon in the area that can perform the procedure laproscopically....
I would love to connect with other women to share in their stories... Right now, my family and I live 1800 miles from the rest of our families... My best friends are far away and even if close could not possibly connect with what I am facing.
I know this is all fragmented, but i am trying to highlight relevant portions of my story... I don't have the robust history of some since my grandparents (all of them) passed away so long ago and there is not a lot of close relatives to get information from. Thank you for reading...
My journey has just begun....Only time will tell of the difficulties that lie ahead. The hardest part now is coping with the fact that I may have passed this mutation to my children...
As a woman living 1800 miles from my family, just having exposure to this site for the 2 days I have known of its existance has provided a wealth of knowledge as well as comfort and support.