When in doubt . . .

My story has both similarities and differences to yours. Mast for IDC, but I had chemo, rads, and now tamox. Onc recommends prophy mast & ooph due to extensive family history even though I'm BRCA- (my genetic material is now part of a research study trying to find other genetic mutations that would predispose to bc). I've decided to do it, along with diep recon (no recon at time of mast) and will be seeing a ps in March. It's a long wait for the ps appt but he's supposed to be the best for diep in this country so worth the wait.

One thing that helped clarify my thinking was something a close friend said. I was going over with her my feelings on this and told her I'm afraid to have the surgery and afraid not to have the surgery. She pointed out that in that case, if I don't have the surgery I'll live with fear for the rest of my life but if I do I'll live with fear up to the day of the surgery.

I wish you the best with whatever decision you make.

Leah

Mantra-

One thing to remember is that you will never have sensation in your breasts again. I don't know how important that is to you but it is worth thinking about. I miss my breasts every day. I agree with Deidre about seeing a psychologist to maybe talk things out before you have surgery. They tell us that 1 in 8 women get diagnosed with breast cancer. They don't tell us that 1 in 4 women that have mastectomies suffer from depression.

I hope you come to peace with your decision.

Mantra,

Once you have mastectomy surgery, you can't go back. So I agree with VinRobMom's advice - if you are undecided as the surgery date approaches, cancel the surgery.  A prophylactic mastectomy is something that you can do at any time so there's no reason why it has to be done now.  

Unless you are absolutely certain that this is what you want to do, I think that giving it time is actually a really good idea.  Just my opinion here (and I'm bound to get some flack for it) but I think that a lot of women who choose to have a prophylactic mastectomy on their healthy breast do so out of fear. In most cases, the decision is made within days, weeks or months of a breast cancer diagnosis.  When we've just recently been diagnosed with BC, it's natural to worry that it will happen again and it's normal to want to do anything possible to avoid that. I remember feeling that way. And when I read posts from those who've had a bilateral, even if they've had physical or psychological problems because of their surgery, most say that they are still happy with their decision because at least they don't have to live with the fear of another diagnosis. I can understand why someone would feel that way. But here's the part that we don't read about much on this board - even for those who don't have a bilateral, the fear goes away - it just takes more time.  In my case, it took about 2 1/2 years before my fear got back to my pre-diagnosis level.  For those first few mammos (on my remaining breast) after my diagnosis, I started to worry weeks in advance.  These days, 4 years out, I honestly don't worry about it at all. If anything, my fear is less than it was pre-diagnosis because I know that if I get BC again, I can't handle it - I know what to expect.   

This isn't to say that for some women, a bilateral isn't exactly the right thing to do.  For some women, the fear is paralyzing and completely takes over their lives. For them, waiting it out might be impossible.  For others the fear of a new diagnosis is based on very real information, because they truly are very high risk. This would certainly apply to those who are BRCA positive and those who have some other high risk conditions.  The key is to understand what your risk level is, and decide based on that. Is your risk of a new BC high enough that you know the only way you can live comfortably is by having a prophylactic mastectomy?   If you have not talked to your oncologist about your risk level, my recommendation is to do that.  If your risk is as high as you expect, or higher, that might convince you that a prophylactic mastectomy is the right decision for you.  If your risk is lower than you expect, that might help you decide to delay or cancel your upcoming surgery and give it some time.   In my case, despite my family history of BC, my own BC diagnosis and years of biopsies on my 'healthy' breast, when I talked to my oncologist, my risk to get BC again was much lower than I would ever have expected.  I expected 40%; it was closer to 20%. For me, that's a risk level I know I can live with so it settled my decision to have a single mastectomy.

Good luck with your decision, whatever you decide to do.

I agree with Beesie and Deirdre...don't have bilateral MX unless you're certain you want to go that route.  I'm also 57 but was first diagnosed at age 50 on the left side (grade 3) and had lumpectomy, radiation, and took Tamoxifen x5 years. No regrets about that decision.  However, in May 2009, I was diagnosed with a new primary (not a recurrence) on the right (opposite) side so then opted for bilateral MX with immediate TE...DCIS, grade 3, necrosis, ER-, PR-, SNB-, BCRA1-, BRCA2-.  Again, it was my decision with no regrets (but my docs were very pleased with that decision).  I'm looking forward to exchange surgery in the next couple of months.  I don't mean to scare you because the chance of a new primary is slim, but I thought you might appreciate hearing from someone who's been through it twice.  I did go 6-1/2 years cancer free and can honestly say I didn't constantly worry about it happening again but would get anxious at the time of followup mammograms...but don't we all?  Pathology results following my mastectomies revealed my left breast was completely clear with no recurrence, so the treatment did work.  Unfortunately, I was one of the small percentage who developed a new primary on the opposite side.  I feel it's important to keep a positive attitude and make a decision that's comfortable for YOU.  I have fantastic doctors with whom I have complete confidence in, and that's a very important factor.  As Deirdre said, a second opinion is always an option.  I wish you the best of luck in making a decision right for you.  Take care, and God bless.