OK, I had a bilateral in July 2013, am now about to finish chemo and then the fills. (I'm not so happy sitting here flat chested like an 8 year old! Seems like a long time doing nothing about getting my chest back, and my husband won't even touch me.) If you do not have an occupational therapist lined up to help right after surgery, ask for one who specializes in post mastectomy therapy. I have learned more from her than I've ever heard anyone talk about! She has helped soften the scars so it won't hurt so much when the fills get started. I can reach as far as my body will let me, and I have great exercises from her to do at home. She just started me with more advanced stretches. I'm not so happy to have 6 tube holes, but she has been working on getting them to release and not be so tight. A bit painful, but so worth it. Also get ahead of lymphedema with her or with a specialist in compression bras, arm sleeves, prosthetics, etc. Do not purchase anything online because most insurances, including Medicare, will pay for what you need. My OT specializes in preventative measures so that lymphedema will not become a lifetime of trouble. Ask questions, talk to the nurses, oncologist, family doctor, friends, family...you will find lots of ideas for who is in your area. I am in the middle of Nebraska; very rural, yet I have lots of wonderful help from lots of wonderful people.

Many of us have or are in the process of reconstruction after bilateral mastectomy. If you search on "bilateral mastectomy" and/or "reconstruction" you will find a lot of Q&A's about this topic. Also, I suggest the Cancer Hope Network (http://cancerhopenetwork.org 1-800-552-4366). They will connect you with women one-on-one via the phone, who have experience with whatever treatment options you are considering; it helped me confirm what type of treatment and reconstruction I chose.

For me, I'm in the middle of reconstruction. I had a bilateral mastectomy on 7/16/13 with tissue expanders. I'm done with the expansion fills, and I am waiting for the implant exchange surgery in November.

I had Stage 1 BILATERAL cancer, small with no cancer in the lymph nodes. So no chemo or radiation. I have no regrets about my decision. Honestly, the tissue expanders are not pleasant, but they are tolerable, because it's about rebuilding my body after cancer destroyed it. And as much as I complain about them, I am happy to have the option for reconstruction--I am anxious to move on and put cancer in the rear view mirror and new boobs in the bathroom mirror!

I would also suggest you talk to a medical oncologist BEFORE you decide on treatment, so you know how treatment options will affect YOU, your risk of recurrence, quality of life issues....those things that matter to YOU! It's YOUR LIFE and YOUR BODY, so do what feels best for you--INFORMED DECISIONS!

If you're doing reconstruction, find a really GOOD plastic surgeon--recommendations from other doctors, who have seen their work and other patients. When you're done with cancer--as I hope you will be soon--your breasts are what you will see in the mirror and the shower everyday.

And please use this site--it is filled with compassionate, knowledgeable, brave and wonderful women who will share info and their experience.

And if you have any specific questions, please feel to post on my home page.

I'm seven years out from Diep reconstruction. Most don't realize I had the bilateral. Personally, I wishI hadn't had the reconstruction. I never felt 100% healed. On the other hand it helped my then eight year old feel that his mommy was back.

I just went had double mastectomy and Diep flap reconstruction 7 weeks ago. It is a hard recovery but I wanted to use my own tissue. At first they felt like rocks but have softened some. I still have swelling and numbness and don't know how long that will last. I've heard that some women get some feeling back but I am not expecting this. I've had BC 3 times in the last 4 years so even though this time it was only in
the right breast, I decided to do both - partly for symmetry and knowing that the recovery would be hard, I didn't want to have to go through the other one going bad down the road.

I had a double 3 years ago now. As the lady posted previous to me, your breast will be NUMB forever. Do not let this scare you though. I was told this but I thought the feeling would come back at some point, it doesn't. The biggest headache with it is when they itch. I can scratch all day and get no relief. One day I had an itch so bad that I took an old tooth brush and rubbed over the area, and finally the itch was gone. Otherwise, it has been no big deal to me. I lost my mother to breast cancer, so if I had 2 more breasts I would have those removed too. My life is more important than having something for a man to play with (if I must be blunt about it).

After a couple of months with the tissue expanders, I got my implants and was able to get some larger than I originally planned. I now have the most gorgeous cleavage and I wear tight fitting low cut shirts all the time. As a matter of fact, I walk around my house without a top on all the time and because I am comfortable with them, my daughter is not so emotional about it anymore.

I do want to tell you this also, do not have unrealistic expectations of what they will look like after surgery. I didn't know at the time that the implants would be placed under the muscle wall so it may take several surgeries to get them well-shaped especially if you had a lumpectomy and/or radiation on the breasts.

Not to worry, we are here for you to help you through it should you decide to have them removed.