Deciding if I should do bilateral or double mastectomy??

Hi @cmshyf Sorry you have to make this decision at all. I had a double at stage 1 because I am BCRA2+ and just didn't want to keep getting more tumors. My cousin had a single and said she could never even up with two sides even with reconstruction so doesn't advise that. The lady who fitted me for prostheses (I didn't have reconstruction) told me it was good I had a double because women who only do one side always struggle with symmetry and are very frustrated by that. Best of luck with your decision and treatment. Blessings, Zebra

I'm sorry you are having to make these tough decisions & for your cancer diagnosis. Both procedures you described are the same bilateral means double mastectomy. Lumpectomy on the one side is what I'm thinking you're referring to. My situation was made easy when the area they need to clear when taking out the lump was going to be so large that I had to remove it all .For me the shock came when my MRI picked up 3 small areas on right and all self contained and in different parts of my breast and a double was the only answer. The tough decision for me was reconstruction or not. Have you consulted a plastic surgeon yet? I had a consultation and after a lot of thought and talking with others who had reconstruction & those that didn't i chose to not do reconstruction. I would suggest if you haven't seen a plastic surgeon for a consult to do so - they will have the best answer on what they believe would be best. For me I ended up with not having reconstructive surgery because too many subsequent surgeries & issues that can arise after (friend had leak & developed Lupus) I chose prostheses. It's a tough decision but getting input from Dr's. & others is the best - when I was deciding my surgeon said if I was still not sure what to do on day of surgery there's the option to leave enough tissue for reconstruction at a later time. So good luck with your decision, don't feel pressured and do what's right for you . Take care💜

I am not sure I understand the question. Are you asking whether to have both removed at the same time, or one at a time?

I had one mastectomy on the first but my surgeon promised to do the other one if I handled it well (I have other health issues). We have a legal right to symmetry, yes, but my other breast also felt funny. Sure enough it was full of cysts and had atypical dysplasia so was glad I did it.

I did not have any reconstruction so my surgeries were easy and I like "going flat." But that's me.

My doctors recommended lumpectomy but I chose a double mastectomy. Reasons:
1. Mammo did not find my tumor, I did. Dense breast tissue makes it hard to find tumor so I didn't want that worry hanging over my head about the other breast.
2. I have read about too many women who start with a lumpectomy, then they need another due to unclear margins, then some end up with mastectomy anyway. I decided to get as much breast tissue out as possible.
3. Why face future surgeries if unavoidable. Face it head on NOW, fight aggressively in the beginning diagnosis to hopefully eliminate the need to revisit this beast in the future when I'm older and more fragile.
4. They say double mastectomy does NOT increase survival rates versus lumpectomy. This makes zero sense to me. If you get a lumpectomy there can be rogue cell still in breast tissue, if you get mastectomy those cells are gone! (Still some in skin obviously but more gone than not). How does this not improve reoccurrence rate?
5. I'm 53 and my breasts were not what they used to be after nursing 2 babies, so now have I have new breasts that look great in dresses, tank tops etc. Bonus, they did liposuction at my exchange surgery to fill in around the implants so now my tummy/ sides look a little better too.
Hope this helps!

I had a unilateral mastectomy in March 2023 but I was diagnosed July 2020. I have BRCA 2 in my genetics but I chose the one breast with no reconstruction because I didn’t want the extra surgeries. No one sees my breast but my husband and myself and I hate wearing bathing suits! I’m not a large breasted woman so even if I don’t wear the prosthetic foam in my bra, it’s hard to tell in a t-shirt. Cancer is 5% genetics and 90-95% environmental so that’s another reason I didn’t do both because who’s to say the other breast will get a tumor. Change the environmental risk in your life to reduce the risk of any type of cancer. Good luck in your journey and do this for you and your health not just a “lopsided” decision.

If you are pre-menopausal and/or have the BRCA gene, a double may offer you peace of mind. Otherwise, single suffices, medically. I always thought I'd get a double if I get got BC, but when the time came, the notion of amputating a healthy breast literally turned my stomach. Go with your gut, informed by the science.

Like some others here, I also did not have reconstruction and just use prostheses when dressing up. When running errands, going for walks, around the house, I don't wear my prostheses since it's cooler and more comfy. I just wear a loose blouse. I'm happy with my decision.

I also knew I wasn't a good candidate for reconstruction because of my neuropathy and a keloid scarring disorder although my surgeon still pushed me toward reconstruction not understanding the issues I would have had. Glad I didn't have it. Even if I didn't have these pre-x conditions, I would have chosen no reconstruction just to minimize risks and surgeries. I just wanted to be done with it all and move on. It's a very individual decision and can depend on where you are in life and relationships. I can completely understand why some women say yes and others say no. You'll figure out what's right for you. 🙂

I had a bilateral mastectomy, because I had 2 tumors in each breast. Only one was more than 1/2 inches, but I never had great breasts and I decided at 73 I didn’t want to go through chemo or radiation again (25 year survivor of non-hodgkin lymphoma) The doctor said my survival rate was the same with lumpectomy vs mastectomy…but I preferred to be done with it (hopefully). If I were younger I might have gone another way.
I have prosthetics, but choose flat unless I am going to be around a lot of people.

I don't wear prostheses at all 🙂

Agree with all points you made. I want to emphasize point 5. I had a double mastectomy. I was 72 and wanted to be done with surgeries and did not want radiation. Lympho vascular invasion was never discussed with me prior to surgery and I heard all the same things about equal risk. When my surgical pathology turned up a small amount of invasion, one of my oncologists said it would be less of a concern because all that breast tissue had been removed. Something to consider.