Results of Genetic Test? Decision?

Colleen --

I'm also BRCA2+. I had a lumpectomy. May have masectomies down the road, but am not ready for them now. I hope to have ovaries removed in next few months because a) the operation should be pretty straightforward with a quick recovery time and b) will reduce my chances of my ER+ cancer recurring or developing a new primary.

For me, two key factors in MY decision (just me, just the way I think! Not recommending this way of thinking to anyone else!) not to have masectomies were the fact that one, I am just not in the mood to go through major surgery and reconstruction -- I want to get ON with my life right now. Two, I'm still relatively young (43) and single and frankly, I like my (perfectly ordinary) breasts the way they are. It might sound a bit odd to other people, but I want to enjoy my intact breasts for a few more years, especially since I might have to let them go at some point.

I realize that since I don't have kids, this is probably not very helpful to you. When I got my BRCA2 results, the gene counselor gave me the name of a therapist that I could see who specialized in women making decisions like ours. ( I didn't take her up on it, but I might at a later point.) You might find a conversation with a similarly specialized therapist helpful to you as you sort through all the factors that would go into your decisions about whether or not to have your ovaries removed, whether to have another masectomy, the timing of each of these IF you decided to have them done, etc.  I'm a big believer in not feeling rushed to act, of not acting out of a sense of fear or pressure.

Frankly, sometimes I think oncos are a bit too casual and hasty with the "Get rid of the breasts!" approach to breast cancer.  I've had these breasts all my life, thank you very much. If they really DO have to go, I'd like to tell 'em good bye first, you know?!

Take good care, Colleen.

PS I am sorry that your husband left you for someone else. Ow. That would be really hard. A guyfriend of a half dozen years took a hike partway through chemo. Not thrilled about that, but that's life.But for what it's worth -- I'm going through this with the support of my friends (and my family, who are far away) and it's been OKAY.  

Colleen -- Me again. Your question raised some questions in my mind. I called my gene counselor and was reminded that (I hope I have this right):

My BRCA2+ status does not influence my risk of recurrence; my risk of recurrence is similar to other women who do not have the gene mutation.  And, lumpectomy+chemo+rads and masectomy are about the same.

My risk of a new primary (i.e., in other breast), however, is about 2-3%/year for the next 10-15 years.  That's probably a high estimate, because it doesn't take into account me having my ovaries out or taking Tamoxifen. It also is based on shakier information than it seems, because the research and follow-up is really not there to state these things definitively.

FInally, she mentioned that different countries have different rates of masectomies. One possibile explanation is that surgeons may vary in how often and emphatically they recommend masectomies, ranging from  PRO-MASECTOMY (in countries like the Netherlands and Germany) to NOT-SUCH-FANS of MASECTOMY (in France).  I thought that was interesting.  

I just had the genetic testing done and got my results back Friday.  I am BRCA2.  I have already had a bilateral - after dx they saw calcification in the other breast that they weren't worried about "now" but I would have had to have a breast reduction anyway so that made my decision easier.  I had already planned to have my ovaries removed because of the risk relationship between ovarian and breast cancer but my test results decided it.  My sister, who was dx with BC at age 38, just had a total hysterectomy/ooph because pre-cancerous cells were found and she has had problems for a few months now.  She decided that enough was enough.  Good luck with your decision.