Preventative surgery.... wwmld?

[julez]

Also, EVEN IF you carry this gene mutation, it does NOT mean that you WILL get cancer. My aunt (who is 60) and her two children (30 and 35) both carry the gene mutation and have never had cancer. This is big because the reason for the genetic testing on my mom in the first place was because she had breast cancer, yes, but also she had 4 cousins, all on her dad's side, die from ovarian cancer. One case of cancer alone in a family is not necessarily an indicator that there is a genetic mutation.

My mom had pre-menopausal breast cancer (which is more likely to be caused by a genetic mutation) at age 40. Her cousins all died of ovarian cancer before 40. They all, obviously, carried the same genetic mutation, passed through my grandfather's side of the family. Obviously my grandfather has the mutation as well, and passed it to my mom. He is 91 and is healthy as a horse - never had cancer, ever.

One step at a time. The numbers are scary, but the outlook is still good. Having information is power.

If you can, speak with a genetic counselor. Doctors are good, but genetic counselors are really the pros at this. Let me know if you'd like a number. I know that the counselor I worked with could either talk with you or refer you to someone in your area.

Good luck. I know this is hard.

[nadasteph]

I am so glad I posted this. There are a lot of great points in here. Thanks em and julez for sharing your personal experiences.

My mom doesn't really remember if she was screened or not. I asked her to ask her doctor. She has been in remission for almost 15 years (yay!), and I think everything that happened around that time is a pretty big blur for her.

I am definitely going to ask my doctor at my physical in a month more info about how to schedule the testing.

[emjacobs]

Good luck steph! I've had the information for a little more than a year now and still can't decide what to do. I know getting the test doesn't guarantee that I would or wouldn't get cancer, but it is still a hard decision to make.

[firefly]

Due to my horrible family history, I was tested last April and turned out to be BRCA1+. After consulting with my OB/GYN, I decided to have my ovaries and fallopian tubes removed (luckily, we were one and done anyway), which decreases the chances of breast cancer to a certain degree. Menopause at 40 - yay!

My husband, who has been extremely supportive through all of this, and I discussed the pros and cons of prophylactic mastectomies most of last summer. In November, I went in for nipple/skin sparing mastectomies. My breast surgeon removed the tissue and right behind her came my plastic surgeon who placed tissue expanders. I had to get them filled at intervals throughout the winter. They were uncomfortable and felt like I had a couple of softballs strapped to my chest.

Last month, I had the TE's swapped for implants and while I don't feel quite "normal" yet, it's much better. I sometimes wonder if it was all worth it, but I know I made the right decision for myself and my family and hopefully decreased my odds of breast/ovarian cancer to tiny levels. Since my father's side of the family is riddled with cancer, it was something I felt I had to do.

Every nurse that spoke with me after my procedures told me they would've done the same thing in my shoes. It was a super-tough call, but upside - no periods and I have perky boobs! Gotta look on the bright side!

[ralphlauren]

I would get tested. If I tested positive I think I would consider the mastectomy.

[prettyinpink]

Okay so I actually just went and saw a breast cancer specialist on Tuesday. I have a horrific family history of breast cancer. My mother had it and died from it, her mother had it and died from it, and her grandmother had it and died from it. My mom was tested for the BRCA genes and was negative so I won't be tested because I would have inherited the genes from her so likely hood is that I am negative as well.

I'm 25 and the specialist suggested a few things. Firstly, he doesn't even want me thinking mastectomies yet because of my age; after we have kids maybe but not now. I could do preventative chemo but at 25 I don't think I want to make that decision to have to be on something like that for the rest of my life. I might do it later after we have kids but not now. I'm too young for mammograms at this point, so I'm to see the specialist every 6 months and do self checks in between. MRI's if we find something. But not to worry to much at this point.

So I guess I said all that in hopes of making you feel a little better. I would suggest seeing a specialist and seeing what route they think you should take before getting tested. Good luck!

ETA: My specialist also said exercising 5 hours a week (a hour/day) helps to reduce the risks for breast cancer by 40% which is huge. So at this point that is what I am doing and plan to have preventative mastectomies after we have children.

[Linie]

I discussed this a few years ago with my doctor. Because my mother died very young, there is no DNA to compare mine with. Anyway, he was against testing just for the sake of knowing. Stress and anxiety also play a role in cancer and he (and his colleagues) think that living with the knowledge that you could end up with cancer is a risk factor in itself.

So I see him every 6 months and have mammo/u-s every 12 months.

So far, no bad news (touch wood).

Good luck