Post by prettyinpink on Jun 11, 2012 21:18:38 GMT -5
I got home tonight and had a phone call from a breast cancer specialist office. I did the happy dance and Erik had no idea why. He thought I got offered a new job! Silly boy. Anyways my OBGYN has been trying to get someone to take a serious look at my history. I went to a genetic counselor last year but it was an awful experience with no answers. In a final grope at straws she called a specialist and he is willing to see me and help us decide what steps we need to be taking now in order to hopefully prevent me from getting breast cancer. This makes me so happy. So freaking happy!!!!!!
May I ask what made you decide to see a specialist? I'm just wondering because breast cancer is positively rampant on my dad's side of the family and his only living aunt tested positive for the BRCA gene. It's an ongoing debate about how far I'll go for preventative measures since my dad's aunt had a prophylactic double mastectomy and a prophylactic double oophorectomy since she's one of the few living women on his side of the family.
Post by prettyinpink on Jun 11, 2012 22:16:24 GMT -5
My mom died of breast cancer 6 months before her 52 birthday she was diagnosed at 50. My grandmother died of breast cancer at 57 and was diagnosed at 50. My great-grandmother died of breast cancer at 60. They have no idea when she first discovered it as she hid it until right before her death. My great aunt and grandmother's sister died 3 days before my mom did of colon cancer ( both cancer's are related). I don't want to go through what I watched both my mom and grandma go through. I just can't do it.
I've wanted to do the prophylactic double mastectomy once we are done having kids, since my mom's diagnosis. My OBGYN is hoping they suggest a prophylactic hysterectomy as well, which I would be totally fine with. So we shall see.
ETA: My mom was negative for BRACA so the genetic counselor I saw last year said there was no reason to test me and there was nothing she could do for me. I spent the 30 minute car ride home in tears. There is obviously some genetic component to my family history so my OBGYN wants me followed closely. I'm only 25 but I can't see waiting for this to "get" me when there are ways of hopefully preventing it.
I'm sorry to hear about all of that but I'm glad you've found someone to help you. My dad says he'll get tested eventually because if he tests negative then I can't test positive. Other than my dad's grandmother and the aunt that tested positive for BRCA, the only other female in my dad's family that hasn't died of breast cancer is my aunt but she had leukemia. All of his family members were in remission, found out the cancer was back, and died within weeks of finding out it was back. It's very scary. I also have wanted to wait until we're done having kids until I start considering prophylactic action.
Post by basilosaurus on Jun 12, 2012 0:15:08 GMT -5
Interesting. If your mom was negative, and your dad's side has no history, I can see why you wouldn't be a top candidate for testing. However, given the history of so many related women, I could see the trend being worrying (to say the least). It may just be for genes they can't/don't currently test for. As much as it sucks, it may just be something you have to screen for rather than genetic testing.
My mom died of colon cancer by 40. That's incredibly rare in someone so young especially for that type of cancer. However, there aren't as definitive genetic tests. Instead, I just screen early and often. There is a genetic test now, but since I can't do anything prophylactically like with breast cancer, I didn't see the value in my particular case.
Post by jamesonontherocks on Jun 12, 2012 20:13:50 GMT -5
Just be aware, if you are BRCA + and go for the prophylactic mastectomy, total hysterectomy/oophroectomy, you can still get ovarian cancer, just somewhere else. Its actually fairly common.
Just be aware, if you are BRCA + and go for the prophylactic mastectomy, total hysterectomy/oophroectomy, you can still get ovarian cancer, just somewhere else. Its actually fairly common.
This happened to a close family friend of mine. It was pretty terrible.
Not to rain on your parade or anything, A. I know that you have done your research, and you know what is best for you.
Just be aware, if you are BRCA + and go for the prophylactic mastectomy, total hysterectomy/oophroectomy, you can still get ovarian cancer, just somewhere else. Its actually fairly common.
I'm not positive for BRCA. Neither was my mother or my grandmother. I just have a crazy family history. And I'm fully aware that I can end up any of the related cancers but even if I can reduce my risk a small amount I'm all for it. But thank you.
Just be aware, if you are BRCA + and go for the prophylactic mastectomy, total hysterectomy/oophroectomy, you can still get ovarian cancer, just somewhere else. Its actually fairly common.
I'm not positive for BRCA. Neither was my mother or my grandmother. I just have a crazy family history. And I'm fully aware that I can end up any of the related cancers but even if I can reduce my risk a small amount I'm all for it. But thank you.
No problem. I have a strong family history of cancer in general (pretty much everything except breast) and its a whole bunch of different cancers so I can't really do much about it. I just like to make that point known because I remember when I first learned that you could get ovarian cancer without ovaries I was kind of shocked.