Deciding if I should do bilateral or double mastectomy??

Posted by cmshyf @cmshyf, Jun 25, 2023

I was just diagnosed w/DCIS & IDC in my right breast. Unfortunately the masses are so large that lumpectomy is out of the question. I was given an option to do a bilateral mastectomy with reconstruction or a complete mastectomy on both with reconstruction. How did you come to a decision on which to do? Was it because of symmetry, test results or personal preference? I’m so torn right now as most of my friends say do both. I do know it comes down to me but here I am…

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Good Morning 🌞 Thank you for all the feedback. After getting results back from several tests and a call from my Dr yesterday morning I was advised to get a double mastectomy due to findings in my left breast as well as axillary lymph node’s on my right side. I have a large mass in my right breast with 2 other small masses. I was originally going to have just the right breast removed with reconstruction and was considering a double mastectomy hence my posting but after my call yesterday it was apparent that that was not going to happen. So here I am now taking it all in and coming to terms that they are both going. I will be having the reconstruction surgery.

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@janisbrede

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!

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Hi. I am in the exact same situation. I am 56 just diagnosed with ILC in right breast. For all the same reasons you indicated I also am having double mastectomy in July with expanders followed by implants three months after

I had nipple discharge and was told to have mammogram and ultrasound. I was told that it was nothing and I was perfectly ok. The radiologist suggested an MRI because of my mom having DCIS.
Then whammo. MRI found 3 spots. Go back to have ultrasound to see if it would fine the tree spots. Ultrasound ONLY found one. Did biopsy on it and it was ILC. Had mri guided biopsy (which is very painful). The other two were 1 benign and 2 ADH.
My surgeon would not allow me to have double mastectomy and said she was confident on lumpectomy or one mastectomy. Got a 2nd opinion and the new doctor was amazing. Actually made me feel like a person and not just “cancer”.
I’m little scared because I don’t like my family or friend to take care of me. I’m the one who takes care of everyone else!!! And very anxious about the recovery and drains
My advice to anyone. Push your doctors for MRI even if you have to pay. My decision was based on my lack of trust in mammograms and ultrasounds and do not want to go through this again!!

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@cmshyf

Good Morning 🌞 Thank you for all the feedback. After getting results back from several tests and a call from my Dr yesterday morning I was advised to get a double mastectomy due to findings in my left breast as well as axillary lymph node’s on my right side. I have a large mass in my right breast with 2 other small masses. I was originally going to have just the right breast removed with reconstruction and was considering a double mastectomy hence my posting but after my call yesterday it was apparent that that was not going to happen. So here I am now taking it all in and coming to terms that they are both going. I will be having the reconstruction surgery.

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How did the reconstruction go? I'm in the same situation right now.

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Hello,
I had a double mastectomy with implants and radiation.

The implants were done at the same time as the mastectomy. Because I needed radiation on one side it affected the skin and changed the appearance of the implant. The second implant "flipped" and my breast looked like a half circle. I had both removed. If you are having radiation I would consider when you have implants put in, if you are going that route.

I had a "diep flap procedure" done and now have fat from my abdomen as my breasts. I wish you the best! Take care! You can do this!!!! ❤️

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Hello, I had dense breasts and my mammograms came back with areas they wanted to "watch" all the time. When they discovered cancer in my right breast I was told I had to have a mastectomy but could keep my left breast. After all the questionable mammograms I felt it was a better decision to have a double mastectomy. I also had cancer in my right lymph nodes.

I had breast reconstruction in the same surgery as removal. I had radiation on my right breast for 28 rounds. It affected my skin and shape of breast so I would not have reconstruction done at the same time. I ended up removing implants. Right implant was not in correct position and the left implant had "flipped" so it was shaped like a half circle. I ended up having a diep flap procedure and am very happy with that decision. I wish you the best. You got this!!! 🦋

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@shell2023

How did the reconstruction go? I'm in the same situation right now.

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@shell2023, are you deciding whether to do reconstruction or not? How goes the decision making?

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Hi All
I ended up having a double mastectomy and 14 lymph nodes removed. I was diagnosed with Stage 3C IDC. I am currently doing 20 weeks of chemo and physical therapy for lymphedema. I will have a 4-6 week break before starting 6 weeks of radiation in March/April after that another break before doing breast reconstruction and full hysterectomy due to being PALB2 positive. Reconstruction could change depending on how I fare after chemo and radiation. I continue to be positive and optimistic about this journey and have very supportive family and friends. I continue to work when I can and depending how I feel after chemo. Also I chose to do diep reconstruction due to friends having issues with implants and research. I pray each and everyone of you is doing well and staying positive! 😊💟💟💟😊

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@lisay1

Hello,
I had a double mastectomy with implants and radiation.

The implants were done at the same time as the mastectomy. Because I needed radiation on one side it affected the skin and changed the appearance of the implant. The second implant "flipped" and my breast looked like a half circle. I had both removed. If you are having radiation I would consider when you have implants put in, if you are going that route.

I had a "diep flap procedure" done and now have fat from my abdomen as my breasts. I wish you the best! Take care! You can do this!!!! ❤️

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I have silicone implants after bilateral mastectomy and radiation on one side because they did not get clear margins. It been 2 years and they still hurt and itch all the time and I have the symptoms of Breast Implant illness. I need to have them removed and can’t find much information on what my options are. Are you happy with your results? Was it a long recovery?

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@taragray

I have silicone implants after bilateral mastectomy and radiation on one side because they did not get clear margins. It been 2 years and they still hurt and itch all the time and I have the symptoms of Breast Implant illness. I need to have them removed and can’t find much information on what my options are. Are you happy with your results? Was it a long recovery?

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I'm very happy with the "diep flap" procedure I had done. I did not like the silicone implants at all and had problems with them right after surgery. It's nice to have my own fat as my breasts.

This is a pretty big surgery. They cut from hip to hip and removed tissue and nerve cells to make the new breasts. Then they gave me a new belly button because the skin is pulled over the previous one. I think it took me much longer than others to heal because I have Rheumatoid Arthritis and kept having infections.

The end result left me with a very flat abdomen (definitely one of the perks) and my own tissue for breasts. I would definitely recommend this. I hope this helps. Best wishes!!

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I had a double mastectomy and "went flat," so my surgery journey and recovery were pretty easy. Not everyone is comfortable with this but I am very happy with it.

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