Post # 1
I just found out today that my sister and I are both positive for one of the mutations. Apparantly there are hundreds. (We took the test at the same time.) We are not surprised since our mom had Breast Cancer at 43 and our aunt at 45 (both survived) as well as our grandma.
Our doctor is awesome. He said there are 3 courses of action. Most aggressive: double mastectomy and bilateral ovary removal. Middle: take Tamoxifen preventatively (although not totally studied on younger women…very successful in older). Least: yearly screening including breast MRI and interuterine ultrasound.
We will both be choosing the yearly screening until we’ve had kids. We are both currently TTC. I’m 30, she’s 27. I will probably elect to remove my ovaries after I have a child (we are only planning on one). They highly recommend this before age 40. I really don’t want to do the double mastectomy though…we’ll see.
It’s pretty weird thinking about prophylactice surgery… I’m glad to finally know for sure and to have yearly monitoring. I wish I would’ve tested earlier!
Post # 3
Oh wow thanks for the info! I should look into that. Is there an recommended age to get tested?
Post # 4
@piglet_625: You wouldn’t get tested unless you have a cluster of breast cancer in your family. Since we did, my mom got tested. The first test is really expensive because they test for all possible BRCA mutations. She tested positive for one, then my aunt, uncle and then my sister and I got tested for that mutation only. That test is only $300ish and is covered by insurance. So…if you have a history of breast cancer in an immediate relative, especially if they were young (40s or younger) at onset, you should def talk to your doctor.
Post # 5
@JaneyD: I admire your courage to get tested! I had breast cancer, but tested negative for the genes, I only tested once I was diagnosed, my family history had so few cases that there was only a 17% chance of it being genetic. I was diagnosed at 33, stage three and ended up with a double mastectomy with a lat flap reconstruction on my radiation side, but you probably won’t need to do that if you choose to reconstruct. I didn’t need any additional tissue on my right side, since there was no radiation and reconstruction was immediate. I also currently take tamoxifen. In the end I loved the mastectomy, and when I was first diagnosed that was my biggest fear. I thought I would never be the same. I don’t love the tamoxifen, but I guess it is worth it. If there is anything I can specifically answer for you, let me know. Again, I think you are very brave for getting the test and I think your course of action is smart.
Post # 6
@JaneyD: Thank you for that information! My great-grandfather died of breast cancer, actually. To my knowledge no one else in our family has had it, but it’s certainly still possible.
I am really glad your uncle went and got tested too. While the pink ribbon campaign is awesome, I do think men with breast cancer tend to get overlooked or not advocated for as much as they should be.