Double mastectomy: Anyone have major side effects and/or regrets?

Posted by mitch3194 @mitch3194, Dec 21, 2023

Anyone have a double mastectomy have major side effects and/or regrets?

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@don73

I am going for mastectomy because my cancer came back. A little afraid because I heard about pain from the mastectomy and lose of motion in arm. How was the surgery? Was there much pain after surgery?

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@don73
Sorry to hear your cancer is back. I found the mastectomy to be way way easier than abdominal surgeries, at least for me. They'll likely give you a 3 day anesthesia pain pump so no pain those 3 days, but it wasn't unbearable after that and I can't even take pain meds. I did have my arms freeze up after a few days, but physical therapy really helps with that. Most of the range of motion came back, certainly enough to do everything I need to do for daily living. I don't even notice it now. You'll do great if you just follow all the instructions. Prayers for you!

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I had a double mastectomy two years ago. No regrets about doing it but I do wish I would have shopped around for a better plastic surgeon. I ended up with an infection in a tissue expander so I lost that one which delayed chemo a little bit. I also wish I would have had chemo first. My cancer was early, so my surgery was first. Without that tumor, I don’t know if it even would have responded to the chemo that I had. I’m probably way overthinking it all but no regrets on the surgery and the recovery wasn’t awful. The drains were the hardest part and that was temporary. I’ve had 4 breast surgeries in two years and none of them were too bad.

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I am 73 so no reconstruction. Did not want next surgery. Just been reading about the complications after surgery. It is a little scary.

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@don73

I am going for mastectomy because my cancer came back. A little afraid because I heard about pain from the mastectomy and lose of motion in arm. How was the surgery? Was there much pain after surgery?

Jump to this post

I had an amazing surgeon. Fortunately I had minimal pain. I just took ibuprofen and Tylenol. I was given a nice soft body pillow to help with sleep. Physical Therapy is a must with a PT that is trained in working with people who have had mastectomies. Wearing comfy clothes helps. Button up shirts or sweater are helpful. Prayers to you that all goes well. You’ve got this!

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@don73

I am going for mastectomy because my cancer came back. A little afraid because I heard about pain from the mastectomy and lose of motion in arm. How was the surgery? Was there much pain after surgery?

Jump to this post

I am sorry to hear that your cancer came back. Mine did too. I had a unilateral (one-sided) mastectomy 3 months ago and I can tell you that what I expected to feel and what I ended up feeling after surgery were very different. My pain level was very low since I followed the doctor's instructions on taking the pain medicine for 10 days. Just Tylenol and Ibuprofen alternating and Tramadol for breakthrough pain.
I don't have any loss of motion with my arm now. My oncologist gave me a set of exercises to do 48 hours after surgery until the drain was removed and another set to continue after the drain was out. She told me to do them every day no matter how much it hurt. And that worked. I now have full range of motion! I was able to return to my power-walking 10 days after surgery. I just didn't swing my arms as much at first.

I did experience some discomfort under my arm where the lymph nodes were removed but that went away after a couple of weeks. I used a pillow at night to keep my arm away from the side of my chest.
I pray you have the same experience I did.

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@don73

I am going for mastectomy because my cancer came back. A little afraid because I heard about pain from the mastectomy and lose of motion in arm. How was the surgery? Was there much pain after surgery?

Jump to this post

Pain was well controlled. I was even able to skip the Oxycodone after the first two doses. Tylenol and Advil did the trick, plus I received the injection during surgery of the drug that kills the pain for three days. The worst pain was in the armpits, but it was not intolerable.
I retained most of my range of motion post surgery. The hard part was not being allowed to use my arms so that the incisions could heal. It took me 6 weeks before I could get the last drain out and use my arms for doing chores and lifting more than 10 pounds.
It was critical for me to stick with the Advil/Tylenol schedule. I also went into surgery with good core and arm strength, so that may have helped. I agree with another contributor that physical therapy post surgery, and maybe even before surgery, in very important.

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@mitch3194

I was told that they do not recommend compression sleeves anymore. I guess you can still get them. Not sure if it would help me as I mostly feel it under the arm and side of my chest.

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Under the arm and in the side of my chest is where I get most fluid build-up as well. I just keep wearing an ace bandage wrapped snugly around my chest when that happens and it reduces the build-up significantly.

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@sizer

I had an amazing surgeon. Fortunately I had minimal pain. I just took ibuprofen and Tylenol. I was given a nice soft body pillow to help with sleep. Physical Therapy is a must with a PT that is trained in working with people who have had mastectomies. Wearing comfy clothes helps. Button up shirts or sweater are helpful. Prayers to you that all goes well. You’ve got this!

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Thanks so much to everyone for sharing your experience as I am seriously considering having a double mastectomy instead of a lumpectomy plus radiation as initially suggested by the surgeon. I would like to know if you had the aesthetic flat closure at the same time as the mastectomy and if you have a good surgeon in the greater NY area that you can recommend. It looks like there is little information on going flat on the websites of some major breast cancer centers. Many thanks!

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@jane2024 not sure what you mean by the "aesthetic flat closure." A plastic surgeon was not involved at all in my mastectomies. The surgeon just closes things up after removing breasts. Did you have something else in mind?

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@windyshores

@jane2024 not sure what you mean by the "aesthetic flat closure." A plastic surgeon was not involved at all in my mastectomies. The surgeon just closes things up after removing breasts. Did you have something else in mind?

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I read about it on the internet, like a chest wall reconstruction after the breasts are removed to make sure the chest will be flat and smooth. These are all new to me.

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