No body talks about it but for me it has been a huge loss sexually to have a missing breast. Reconstruction does not replace the breast. It creates a numb shape so that you look normal in clothes. That's all it does. So for that reason I am glad I kept my healthy breast even with twice a year imaging with mammogram and MRI. That is a small price to pay that has preserved some tiny bit of sex life at age 50. And I need all the help I can get! LOL

I also had IBC, but stage 3C. My BCRA tests all came back negative. Cancer was only in right breast and lymph nodes under right arm, but I had a bilateral mastectomy because I didn't want to go thru this cancer ordeal again. I wanted to reduce my chances of reoccurrence as much as possible especially since I had IBC and HER2 positive cancer which put me at a higher risk of reoccurrence. Also, my onc thought she felt something in my left breast. Nothing showed up on mammogram or on PET scan. She said I would need a biopsy. I was able to skip it since I decided to have that breast removed. I know having both breasts removed doesn't necessarily reduce my risk of recurrence, but at least I feel more at peace about it. It's really a personal decision. You have to decide what is right for you. I made my decision after talking with several 10+ Years cancer survivors.

I talked to women who had had unilateral and bilateral, some recently and some as much as 28 years ago. I decided that due to my bit of OCD I needed to do both. I can't even stand if I accidentally get two different generic athletic socks. I can tell they are different and it drives me mad.

You know what you can live with for your peace of mind. We are all different.

I had only my right removed and I feel like that was the right decision for me. I wanted to get back to work and having a good arm was really helpful. After radiation and several reconstructive surgeries I'm glad I only had one removed. Really, though it is a personal decision.

I made my decision to have both removed after talking with so many other BC sisters and they had had only one removed and back doing the other one in 6 months due to cancer in the one that was left and some had been 2, 3 years and they were back for same reason and had spread to other areas as well. I'm glad I did. I never want to go thru this again. Prayers for you.