Kruzin - I did opt for the bi lateral mastectomy because the first time I was diagnosed with Stage 0 it was in my left breast and removed via lumpectomy with wide margins. Two years later I had Stage 1 invasive in the right breast. Of course prior to surgery I didn't know how bad the cancer was in the right but I went with the bi lateral mastectomy because I had both breasts involved already and figured it was just going to continue and I didn't want to take a chance of missing it (that lobular is tricky) and having even more issues down the road. I won't know if I resolved my problem for many, many years down the line but I wanted to put an end to the worry of having to take out pieces, bit by bit and not knowing if it might spread and become worse. My surgeons and oncologists at the time offered both lumpectomy and mastectomy as options and didn't hesitate to go with the full bi lateral mastectomy. I had pretty strong feelings that I didn't want the on-going surgeries or worry. I had cysts and benign breast lumps over the years and a couple of surgeries prior to the mastectomy, so I'd had enough. Following surgery my medical team did a full pathological work up of the breast tissue and they found pretty much what we suspected, which was one area of invasive lobular carcinoma, LCIS and DSIC and microcalcifications throughout both breasts. With that much tissue they can do a lot of tests and get tons of information on exactly what is growing. In my case, everything was growing in there and it wasn't good. I could have found just that one area and then perhaps regretted my decision but I don't think so. For me it was a matter of being the most aggressive I could be to remove the potential for cancer in the future. The mastectomy isn't really a very difficult surgery (I didn't think). After a couple weeks and good self care and follow up care you feel pretty good and within a year I was feeling pretty much like my old self.

I'm so glad you listened to your feelings, and it worked out for the best! I'm going to talk to my surgeon about this, but she sounds like I should just do the one, but we'll see. It's different when someone doesn't have this to say, and this is a business to make money. But I'm doing lots of research, and you've helped so much and I appreciate lots

I re-read your post and wanted to relate what kinds of sensations I was left with after my double mastectomy. (The mastectomy itself wasn’t hard, and not even particularly painful. After I was home I didn’t even need to take Tylenol. I did end up with one drain for six weeks, which was frustrating. The surgeon removed it only because six weeks was the cutoff for him and he said I would likely form a seroma— which I didn’t... I think the drain could have been removed a month earlier with no issues.) I have feelings over my entire chest area, including around my scars. There have been a few times I’ve had an itching on one or both sides, which I just gently rub because I never scratch that area anymore— I don’t want to damage the skin. Especially my irradiated side. I do have an area on my torso just under my armpit without much sensation on my right side, and on my left side (this is the side that had cancer, and I also had an axillary dissection with 20 lymph nodes removed), my arm pit, a little bit under my armpit, and the back side of my upper left arm have no feeling at all. I have to actually watch when I apply deodorant on that side to see if It’s getting where I want to put it LOL.

Hi @kruzin - I don't know if I'm too late to post my experience as you may have already gone ahead and done your surgery. But, if not,
I wanted to share my information with you, if it might help you.

I just had my bilateral mastectomy with reconstruction less than a month ago. I had biopsies in both breasts. I learned one breast had cancer the other tested out benign. The diseased breast had several large masses that all tested malignant and a lumpectomy was not deemed 'ideal' due to the amount of tissue removal involved so a full mastectomy was indicated for that one breast.

I am a research nut and did copious research on the subject and also had 2 consults with the breast surgeon and 2 with the plastic surgeon before deciding. I also spoke with my spouse, 2 children and daughter-in-law who's a nurse. During my weeks of contemplation and research, I subscribed to MedScape and read many of their published medical studies on mastectomy and breast cancer, including survival rates, surgery options, decisions made by patients who chose a particular option and comments from nurses and surgeons. I also searched every article I could on the internet and read many patients' comments.

In the end, I decided to remove both breasts and do immediate implant placement in both. I knew I wanted reconstruction as I would be too depressed otherwise. Mental health is equally as important as physical health and should be weighed as carefully, in my opinion.

My reasoning for doing a bilateral mastectomy and immediate reconstruction rather than just doing one breast is as follows:
* If both were done at once, the plastic surgeon would be able to make both breasts match closely, utilizing the new Alloderm artificial skin and identical silicone breast implants.
* I currently have excellent insurance and who knows what I may have years from now if the healthy, remaining breast were to develop something.
* I will never be younger than I am now, and my chance of a good recovery should be better now than years down the road (if cancer were to develop again).
* I would have one time off from work, one (longer) procedure day, one hospitalization, one anesthesia, and one recovery.
* Both breast gone = no further mammos, MRI's, no chemo, no radiation, (hopefully??) and no further worry about the other shoe dropping with the remaining 'healthy' breast developing something down the road. I have read how women who have cancer in one breast must go in and have any remaining breast tissue looked at and poked and prodded yearly for the rest of their lives. I wanted to avoid that if I could. Who needs more stress and worry?
* In addition, my healthy breast had been banged up pretty good with a stereotactic biopsy and had developed a large, hard lump and depression at the point of entry. I felt that it was now injured and may be more susceptible to getting cancer (gut feeling) which further directed me to going forward with both mastectomies.
All-in-all, I am currently glad I chose as I did, however I am still in recovery and may come to a different conclusion later, but I'm hoping for the best!

Thank you so much for taking time with this info. I haven't had surgery yet still undergoing chemotherapy. I actually seeing my surgeon next week, and by choice I've decided also to have a bilateral. I feel also the no worry is better for your mental health. I'm still in limbo for reconstruction.. If I do I'm waiting till after radiation, only because a friend of mine did it first and the radiation ruined what she did for reconstruction. I don't know if you have to undergo any other treatments, but chemo for me hasn't been to bad. I need 16 treatments total, and have7 more to go. Just feel tired at times, and I gained wait from the steroids. My surgery will be in October , and all this information has helped so much, and if you have any questions I should ask my surgeon would help, I've been making a list but since you been there all the help is appreciated.. thanks again you stay strong and healthy.

Hi @kruzin, fortunately, I did not have to have radiation or chemo prior to surgery. I am not sure why some women do and some do not. It may be that I expressed that I did not want to do either treatment unless it was critical that I did. But I am not sure that was the only reason. I do know that they said if I only had a large lumpectomy (it would have been nearly half my breast) rather than a mastectomy that I would indeed be having radiation afterwards, but if I had the mastectomy I would not have to.
I do know that studies have shown that there is a much higher possibility of capsular contraction if you have breast implants and then have radiation treatments following the mastectomy. In my case, I wanted immediate reconstruction because I looked at many online photos of women who waited and were left with a big bag of empty skin that would start to grow together.
They could be fitted with an expandable bag (TE or tissue expander) to open the space back up to allow for a future implant, but that just means you will still have a foreign body in there that you have to deal with, tubes hanging out, constant pain as you force expansion, many weeks or months of waiting while you re-expand the pocket, irregularly shaped pockets, possibilities of infection (open wounds there) and a delay on just getting your life back. I didn't know why I would want to put myself through that if I didn't have to.
I do know that capsular contraction around the new breast implant can happen any time even with just a regular breast implant done for aesthetic reasons (non cancer), but knowing how to massage and keep the pocket open, and to remember to continue to take anti-inflammatories (ibuprofen, etc.) for a while, will help keep the pocket open and reduce this possibility.
I do know that many of the breast implant manufacturers are giving a 'warranty' in that if you do have capsular contraction, they will replace the implant for free. You should ask the doctor about that.
Meanwhile, I'm sitting here 3 1/2 weeks out from surgery with two very nice looking, matching full breasts. I either wear a supportive tight bra or if at home, I wrap my chest with a wide elastic bandage for compression and comfort. Now each breast sports a 5" lateral incision from the nipple to the armpit that is still taped with surgical tape, but it is no trouble. I have tolerable pain and sensitivity but can go about my life (mostly). I too have gained weight since I had to go off my female replacement hormones 2 months ago, but in another week will be cleared to go to exercise class and get some activity back in my life.
I was lucky to get a really good doctor team for the initial cancer surgery and another good one for the plastic surgery immediately following. I did ask for and receive a nipple sparing and skin sparing surgery. So far, so good. Be sure and ask if you can have that too. Let them know if that is important to you. I hope that helps. Knowledge is power. Good luck!